Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol

Melissa Kinch; Thilo Kroll; Diarmuid Stokes; Suja Somanadhan

doi:10.12688/hrbopenres.13684.2

Home Browse Interventions to support adolescents and young adults with the healthcare...

ALL Metrics

Views

115

Downloads

Get PDF

Get XML

Export

▬

✚

Study Protocol

Revised

Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol

[version 2; peer review: 2 approved]

Melissa Kinch ¹, Thilo Kroll¹, Diarmuid Stokes¹, Suja Somanadhan ¹

PUBLISHED 27 Jul 2023

Author details Author details

¹ School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Dublin 4, Ireland

Melissa Kinch
Roles: Conceptualization, Data Curation, Formal Analysis, Investigation, Methodology, Project Administration, Resources, Validation, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

Thilo Kroll
Roles: Conceptualization, Formal Analysis, Methodology, Project Administration, Resources, Supervision, Validation, Visualization, Writing – Review & Editing

Diarmuid Stokes
Roles: Methodology, Software, Writing – Review & Editing

Suja Somanadhan
Roles: Conceptualization, Formal Analysis, Methodology, Project Administration, Resources, Supervision, Validation, Visualization, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS

Abstract

Background: Due to technological advancements and improved medical management of adolescents and young adults (AYAs) living with renal disease, there has been an exponential increase noted in the number of patients advancing from the paediatric to adult nephrology healthcare setting. Subsequently, more AYAs are required to undergo the process of healthcare transition from paediatric to adult healthcare services. This process is often a challenging period for young people and families and is often associated with a decline in physical and psychosocial health outcomes of AYAs with renal disorders. To ensure a successful transition, AYAs must develop the ability to manage their renal condition, including the medical and psychosocial aspects of their condition, independently. Despite significant research into the transition from paediatric to adult healthcare for this unique patient cohort, the transition period remains a challenge. The scoping review will aim to map, explore, and understand the interventions that are currently available to offer positive perceptions and experiences of transition for both AYAs living with renal disorders and their families.
Methods: A systematic literature search will be conducted of PubMed, PsycInfo, CINAHL, ASSIA, EMBASE and Web of Science databases from the year 2000 to present. Two independent reviewers will screen the peer-reviewed literature obtained and assess them against the inclusion criteria to determine their inclusion eligibility. Data will be extracted and synthesised using a template refined by the authors. The scoping review will be undertaken in accordance with PRISMA-ScR guidelines. Data will undergo a formal critical appraisal using recognised appraisal tools.
Conclusions: Through mapping this knowledge, the scoping review will aim to identify interventions that are currently available and identify gaps within the literature. This evidence may support the development of transitional care interventions in the future, promote patient satisfaction, and improve patient outcome measures and experiences.

Keywords

Kidney Disease, Renal Disorder, Rare Renal Disorders, Transition Care, Transitional Care, Transfer to Adult Care, Young Person

Corresponding authors: Melissa Kinch, Suja Somanadhan

Competing interests: No competing interests were disclosed.

Grant information: This work is supported by University College Dublin. The review is being undertaken as part of a greater PhD study by the primary reviewer (MK), and is supported by the University College Dublin, School of Nursing, Midwifery and Health Systems PhD Nursing Scholarship 2022 (grant number: COV19-2020-017, assigned to the fourth author Dr. Suja Somanadhan).
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright: © 2023 Kinch M et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

How to cite: Kinch M, Kroll T, Stokes D and Somanadhan S. Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol [version 2; peer review: 2 approved]. HRB Open Res 2023, 6:9 (https://doi.org/10.12688/hrbopenres.13684.2) First published: 02 Feb 2023, 6:9 (https://doi.org/10.12688/hrbopenres.13684.1) Latest published: 30 Oct 2023, 6:9 (https://doi.org/10.12688/hrbopenres.13684.3)

Revised Amendments from Version 1

This scoping review protocol has been revised following international peer-review feedback. Minor amendments have been made to the background section to improve its clarity, readability, and structure. The review objectives have been refined to ensure that the scoping review is manageable, and that each secondary objective can be achieved. Furthermore, each stage of the scoping review (stages one through to stage six) has been re-structured and re-phrased to ensure transparency and clarity surrounding the process that will be followed in the subsequent scoping review. In stage five, the “PAGER” framework by Bradbury-Jones et al. (2022) has been added and identified as a framework that will greatly enhance the reporting and summary of results. Minor reference errors were noted in Version One and have now been corrected.

See the authors' detailed response to the review by Kim Mooney-Doyle
See the authors' detailed response to the review by Alison Luke

Introduction

The number of young people advancing from paediatric to adult nephrology care has increased dramatically in recent years; patient survival rates have increased by 85–90% (Ferris et al., 2006; Lewis et al., 2009; Watson et al., 2011). Over the past few decades, earlier diagnosis, and significant medical and technological advancements have accelerated patient survival rates and improved life expectancy (Joly et al., 2015; Stepien et al., 2021). Hence, more patients are required to undergo healthcare transition, generating an increased need for a structured, well-planned transition from the paediatric to adult healthcare setting (Joly et al., 2015).

Transitional care was first described in the literature approximately 40 years ago and is now considered to be crucial in the context of adolescent health care (Barbero, 1982; Wildes et al., 2023). Transition is defined as ‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems’. (Blum et al., 1993, p. 570). Blum et al. (1993), p. 573, further defined how transition ‘attends to the medical, psychosocial, and educational/vocational needs of adolescents’. Transitional care aims to maximise lifelong functioning and patient potential by providing high-quality, continuous and developmentally appropriate healthcare to adolescents and young adults (AYAs) and families when moving between paediatric and adult health services (American Academy of Pediatrics et al., 2002). It is essential that transitional care is carefully differentiated from the “transfer” of care; “Transition” to adult healthcare refers to the process that commences during childhood and ends once the patient is fully integrated, independent, and comfortable in the adult healthcare system, whereas the “transfer” of care is the distinct point where the patient moves to the new healthcare setting or provider, and is just one aspect of the multi-faceted transition process, which must be anticipated by AYAs and families and well-co-ordinated (Marks, 2022).

There are various interventions available to support the transition process for AYAs and families living with chronic conditions. These interventions include summer camps, clinics, guidelines, transition readiness scales, online educational and interpersonal communication programmes, e-health i.e., the use of mobile apps, the use of digital monitoring devices, problem solving challenges, role-play, arts-based interventions etc. (Callinan & Coyne, 2020; Catarino et al., 2021; Miller, 2022). The purpose of this scoping review is to map out the interventions that are available to support transition for AYAs living with renal disorders, specifically. Transition is particularly challenging for AYAs living with renal disorders due to the complexity of their conditions. For example, patients with renal disorders may receive renal transplantation or other specialist treatments, such as enzyme replacement therapy for Fabry’s disease (Quaglia et al., 2014; Riccio et al., 2020).

Furthermore, moving from paediatric to adult care occurs during an emotionally vulnerable phase in the young person’s life (Bell, 2022). The transition process occurs in tandem with the necessary life transition from adolescence to adulthood, which is well-recognised as a period of rebellion, engagement in risk-taking and impulsive behaviour, and non-adherence attributed to ongoing and incomplete development and maturation; a period where adolescents often experiment and feel unconquerable (Foster, 2015; Kreuzer et al., 2019; Tareen & Tareen, 2017; Watson, 2005). This adolescence/young adulthood period occurs between the ages of 14–24 years, in the context of brain development and maturation (Watson et al., 2011). Hence, young people in this age bracket must be carefully considered when planning transition (Bell, 2007; Watson et al., 2011).

The role of the family in the transition process must also be recognised and considered. As discussed by Betz, Nehring and Lobo (2015), the healthcare transition process instigates a realignment of the relationship between AYAs and their parents or caregivers. AYAs must learn how to self-manage their condition, a role which may have previously been managed by their parents or caregivers. Further, parents or caregivers themselves must be prepared for the transition process. A study undertaken by Shaw, Baldwin and Heath (2021) identified that parents/caregivers struggle to let go of their current role in their young person’s healthcare due to feelings of fear or uncertainty regarding their AYAs future once they reach adulthood. Families must receive adequate support and guidance during the transition process, and their role must not be forgotten. Though this scoping review will specifically search for interventions to support a positive transition process for AYAs with renal disorders, interventions that also refer to the role of the family in the process will be included, as the role of the family is integral to a successful transition of care.

Despite the complexity of the transition process, evidence suggests that most AYAs and families receive inadequate or a total absence of transition preparation (Gabriel et al., 2017). If AYAs transition to adult healthcare in a scenario whereby they are not able to manage their disease adequately, undesirable health outcomes may arise (Ma et al., 2021; Young et al., 2010). This is problematic and adds to the already challenging period that AYAs face at this time; AYAs are navigating their adolescent development transition period, whilst also learning to manage the various aspects of their healthcare, grieve losses in their lives, and attend to the practicalities of various treatments, interventions, and appointments that they undergo (Kralik & Van Loon, 2010). In addition to this challenging developmental period, young people with kidney disease have specific medical needs that they must manage, such as steroids, which often alter their appearance and may affect their mood, their growth may be stunted, they may be faced with extreme lifestyle modifications inclusive of fluid and diet restrictions, intensive medication regimens with side effects, and AYA’s may have to undergo dialysis, which comes with side-effects such as fatigue, and is time consuming and restricts their activity (Dallimore et al., 2018).

A failure to transfer AYAs using carefully planned, well-designed transition programmes with the required competencies to manage their condition, may lead to poor attendance at adult nephrology units (Çiçek & Alpay, 2022). In turn, AYAs are placed at high risk of clinical deterioration, resulting in a cascade of negative health outcomes (Foster & Bell, 2015; Kreuzer et al., 2019; Prüfe et al., 2022; Watson et al., 2011). This may be attributed to multiple factors and not exclusively poor attendance to adult clinics, such as non-adherence to medications or medical treatment and regimens, including non-adherence to life-long immunosuppressive regimens, leading to an increased risk of rejection and allograft loss and oftentimes a return to dialysis (Akchurin et al., 2014; Campbell et al., 2016; Crawford et al., 2020; Dobbels et al., 2010; Dobbels et al., 2009; Foster, 2015; Foster & Bell, 2015; Kreuzer et al., 2019; Mazzucato et al., 2018; Prüfe et al., 2022; Quaglia et al., 2014; Wildes et al., 2023).

Moreover, the transition process must be considered for AYAs living with rare renal disorders. Transition is often challenging for AYAs and families living with rare renal disorders. Over 300 inherited, congenital, and acquired renal disorders meet the epidemiological criteria to be defined as rare renal disorders (Bassanese et al., 2021). The list of rare renal disorders is constantly growing (Joly,et al., 2015). In Europe, renal disorders have an estimated prevalence of approximately 60–80 cases per 100,000, with nearly all children who progress to renal-replacement therapy living with an inherited kidney disease (Devuyst et al., 2014). Moreover, children born with rare renal disorders, particularly severe congenital nephropathies, and their families often live with impaired physical, cognitive, and psychosocial development (Aymé et al., 2017; Devuyst et al., 2014). Many young people living with such conditions are now surviving into adulthood with conditions that were previously unknown to or not frequently seen by adult nephrologists (Marks, 2022).

Hence, adult nephrology services are receiving a growing number of AYAs with rare renal disorders who have transitioned from paediatric services (Watson et al., 2011). The transition from the paediatric to the adult healthcare setting for these patients has been reported to be a challenge to transfer, due to a lack of training and knowledge of adult nephrologists of these rare conditions, amongst several other reasons (Prüfe et al., 2017; Watson et al., 2011). However, this cohort of patients must be carefully considered, as congenital anomalies of the kidney and urinary tract have been cited as the most common causes of end-stage and chronic kidney disease in childhood (Marks, 2022). These patients and their families must be carefully transitioned from paediatric to adult health care, with emphasis placed on the need for these patients and families to have adequate knowledge surrounding how to manage their health and transfer to adult-centred care with up-to-date medical knowledge (Gabriel et al., 2017).

Transition aims to gradually prepare AYAs and families for a successful integration into the adult healthcare system in a stepped, co-ordinated and uninterrupted manner (Matsuda-Abedini et al., 2023). A positive transition begins in the paediatric health setting and prepares the adolescent to become a self-responsible adult patient who manages their condition appropriately and ends with the patient finding their place in the adult healthcare system in a safe and secure manner (Kreuzer et al., 2019; Paone et al., 2006). Transition is considered successful if the patients’ health competence, psychosocial needs, and self-determination are promoted, and when the patient has improved decision-making abilities and the ability to communicate their care effectively (Kreuzer et al., 2019; Prüfe et al., 2022; Watson et al., 2011).

The importance of an effective transition programme, incorporating well-planned interventions and strategies for young people living with renal disorders is apparent. Studies have demonstrated that the highest rate of kidney transplant loss occurs during the transition years and immediately following transfer of care (Foster, 2015; Foster & Bell, 2015; Kreuzer et al., 2019; Prüfe et al., 2022; Watson et al., 2011). Therefore, this age group must be carefully managed, as graft failure often requires a return to dialysis, reducing the patient’s quality of life, increasing morbidity and mortality rates, shortening AYAs life expectancy, and heightening health care expenses (Prüfe et al., 2022). Providing increased knowledge, awareness, and education to AYAs surrounding their condition and the transition process, and providing appropriate, relevant, easily accessible self-management strategies may better support AYAs with the transition process. Improved psychosocial support, the management of potential extrarenal complications, and the provision of genetic and reproductive counselling are other integral components that must be integrated within the transition programme (Aymé et al., 2017).

Moreover, it has been established within the literature that the transition process should start early, by at least 12 to 14 years old, providing sufficient time to prepare patients and parents/caregivers for the transition of care (Aymé et al., 2017; Willis & McDonagh, 2018). Nonetheless, the timing of transfer must be individualised, and healthcare providers must be cognisant of patient-specific factors including growth, maturity, and overall readiness to transition (Aymé et al., 2017). The provision of an effective transition programme may reduce the risk of declining renal function and acute kidney rejection episodes and may also improve long-term graft outcomes in AYAs (Raina et al., 2018). Due to the complexity of renal diseases, transition support and services must be carefully planned and timed, and focus on empowering a safe transfer of care from the child to the adult healthcare setting for AYAs and families living with renal diseases, to ensure the risk of negative health outcomes is mitigated.

A preliminary search of Medline, PROSPERO (PROSPERO, 2022), the Cochrane Database of Systematic Reviews, and Google was conducted on the 1^stof October 2022. An ongoing systematic narrative review protocol was located on PROSPERO by Piccoli et al. (2020), which will explore the best approach for the clinical management of young people with chronic kidney disease undergoing transition. However, this scoping review differs in that it aims to scope the literature and map any intervention to support transitional care for AYAs with renal disorders within healthcare settings, inclusive of rare renal disorders, chronic kidney disease, patients undergoing dialysis, and transplant recipients. For this review, an intervention may be defined as any programme, service, intervention, clinic, scale, model, tool, or activity that aims to support AYAs with renal disorders as they transition from paediatric to adult healthcare services.

Methods

The methodology for this review employs the five-stage framework, as outlined by Arksey and O’Malley (2005), incorporating more recent methodology refinements as proposed by Levac, Colquhoun and O’Brien (2010) and the Joanna Briggs Institute (JBI) (Peters et al., 2015; Peters et al., 2020). Arksey and O’Malley (2005) also identified an optional ‘consultation exercise’ to inform and validate findings, as a sixth stage at the end of the review (Arksey & O’Malley, 2005).

This step has been identified as a stage that will improve the review remarkably (Arksey & O’Malley, 2005). Researchers from various academic and health disciplines who have conducted research or cared for patients and families undergoing healthcare transition will be invited to be a part of the scoping review, and appraise and validate the review findings. The Preferred Reporting Items for Systematic reviews and Meta Analyses Scoping Review extension (PRISMA-ScR) checklist will be utilised to increase methodological transparency and ensure consistency when publishing findings (Tricco et al., 2018). The six-stage scoping review framework developed by Arksey and O’Malley (2005), incorporating guidance from the JBI (Peters et al., 2020), will be employed to guide the scoping review.

Aims/objectives

The objective of this scoping review is to map the various interventions that are available within the literature to support AYAs living with renal disorders as they transition from the paediatric to the adult healthcare system. The following research questions will be addressed:

1. Identify, appraise, and synthesise knowledge surrounding the interventions available to support a successful healthcare transition for young people living with renal disorders.
2. Ascertain whether the AYAs were involved in the intervention’s development.
3. Determine the study settings and geographical contexts, and the study types conducted (i.e. qualitative, quantitative or mixed-methods).
4. To understand the experiences, barriers and facilitators recognised by young people living with renal disorders, of current transition interventions.
5. Identify research and knowledge gaps in the literature.

Stage one: Identification of the scoping review research question

The scoping review question guides and directs the development of the review process. In this review, the population, concept, and context (PCC) framework will be utilised, which has been recognised as an effective framework for a scoping review by the JBI (Peters et al., 2020). The preliminary question is:

What interventions are available to support the transition of care (Concept) from the paediatric to adult healthcare setting (Context) for adolescents and young adults living with renal disorders (Population)?

Stage two: Identifying relevant studies

A systematic literature review aims to obtain as many relevant studies as possible on a particular topic, as opposed to every study available using a thorough, objective, and reproducible search (Levay & Craven, 2019). Being systematic minimises bias (Levay & Craven, 2019). The review question has been formulated using the PCC framework. This ensures that appropriate, relevant search terms can be developed, ensuring the retrieval of pertinent results on the interventions available to support the transitional care of young people living with renal conditions, and will ensure that the retrieval of irrelevant results is minimised.

Eligibility criteria

The inclusion and exclusion criteria is developed through the generation of a PCC table (Table 1), as recognised by Boland et al. (2017) as an effective means of defining criteria. This process remains iterative, and any changes made throughout the review will be recorded and documented to maintain transparency and rigor in reporting.

Table 1. Inclusion and exclusion criteria.

Review question	What interventions are available to support the transition of care from the paediatric to adult healthcare setting for adolescents and young adults (AYAs) living with renal disorders?
Review question	Inclusion	Exclusion
Population	Humans. Studies that include AYAs (12–24 years old), who are living with a renal disorder. AYAs must be: (a) preparing for transition; (b) currently undergoing transition; (c) having undergone transition from the paediatric to the adult healthcare setting. Studies that refer to families, caregivers, healthcare providers, programme managers and policymakers involved in the transition process alongside the AYAs. Male, female and non-binary individuals.	Any study population other than humans, i.e., animals. Studies that do not include AYAs between 12–24 years old who are living with renal disorders. Studies that do not refer to AYAs undergoing the transition process from the paediatric to the adult healthcare setting.
Concept	The concept of transition from the child-centred to the adult centred healthcare system. Transitional care interventions – any intervention, for example, programme, service, intervention, clinic, or activity that aims to support the movement of AYAs and families from paediatric to adult healthcare services.	Does not refer to transition from a child-centred to adult-centred healthcare system. Any intervention that is not designed to support transition.
Context	AYAs with renal disorders, including chronic renal disorders, rare renal disorders, kidney transplant recipients and AYAs on renal dialysis.	Studies that do not refer to renal disorders, including chronic renal disorders, rare renal disorders, kidney transplant recipients and AYAs on renal dialysis.
Study design and study focus	All primary peer-reviewed studies of any study design.	Studies that are not primary peer-reviewed studies.
Setting/geographical location	Health services, including hospitals (various areas within the hospital such as wards, outpatient departments etc.). Interventions provided in the community by healthcare professionals from secondary or tertiary health services will also be included. No limits will be placed on geographical location, both national and international literature. No limits will be placed on language.	Studies that refer to any other transition process, other than the transition process from the paediatric to adult healthcare services. Studies that do not refer to secondary or tertiary healthcare services. Other health service areas such as respite or residential centres, or special care.
Time period	Studies on or after the year 2000 to current.	Any study prior to the year 2000.

Population

This scoping review will include AYAs living with any renal condition, encompassing any chronic or rare renal condition, patients who are currently on renal dialysis, and renal transplant recipients. Though this scoping review will specifically search for interventions to support AYAs with the healthcare transition, studies that refer to families, caregivers, healthcare providers, programme managers and policymakers involved in the transition process alongside the AYA will also be included, given the important and invaluable role that they play in the transition process.

Age

Studies will be included if they refer to AYAs between the ages of 12–24 years old, who are either (a) preparing for the transition process, (b) currently undergoing the transition process, or (c) having undergone transition from the paediatric to the adult healthcare setting. This age range is deemed appropriate, as 13/14 years old is the recommended age to commence the transition process, and through the inclusion of patients up until the age of 24 years, we can retrieve results from patients who may have completed the process (Willis & McDonagh, 2018). Furthermore, this age group is appropriate, as the International Society of Nephrology and the International Pediatric Nephrology Association have recommended that transition should occur between 14 and 24 years old (Joly et al., 2015). By including 12 and 13 year olds, we can capture patients who are about to commence transition.

Gender

Studies that refer to male, female and non-binary young people with renal disorders will be included in the review. This will avoid gender bias (Upchurch, 2020). Gender is often characterised as female, male or non-binary. This review will include all genders to promote inclusivity and to widen participation.

Concept

This review will examine the concept of transition, which may be defined as the purposeful, planned process whereby adolescents move from paediatric, family-centred health services to adult, person-centred health services (Campbell et al., 2016). This review will examine interventions that support the transition process. For this review, interventions encompass any programme, service, intervention, clinic, or activity that aims to support the movement of AYAs and families from paediatric to adult healthcare services.

Context

Setting

This scoping review will consider primary research studies that have been conducted in multiple different settings within secondary and tertiary level health services, including hospitals (including various areas within the hospital such as wards or outpatient departments). Nonetheless, studies that refer to interventions provided in a community setting by healthcare providers from secondary or tertiary healthcare services will be included. This decision has been made, as this scoping review is part of a larger PhD study examining healthcare transition in secondary or tertiary healthcare settings. The results of this review will feed into the primary research study which focuses on how healthcare professionals from secondary or tertiary health services can support young people and families living with renal disorders with healthcare transition.

Geographical location

No limits will be placed on the geographical locations included within this study. Furthermore, there will be no language limits placed on our initial search. This ensures that language and publication bias is avoided. As discussed by Boland et al. (2017), language bias may arise if only English-speaking countries are included due to English-language journals being more likely to publish positive results. Due to resource limitations, the literature will be searched in English, with no restrictions placed on language. This ensures maximum retrieval of literature in all potential languages. Efforts will be made to translate study abstracts, where possible, using translation tools such as google translation services. However, literature that is obtained but not in the language of choice (English), and that cannot be readily translated due to resource limitations, will be excluded (Gough et al., 2017).

Nonetheless, by not setting language limitations when searching, all potential literature can be obtained and made readily available for other researchers who may have the resources to translate the articles that are obtained (Gough et al., 2017).

Types of sources

This scoping review will consider all primary peer-reviewed study designs that explore interventions to support the transition process amongst young people with renal disorders, including quantitative, qualitative or mixed-method study designs or methodologies. This will ensure that the authors can capture studies which refer to interventions and also those that refer to AYAs/families/healthcare professionals experiences of those interventions, where relevant. In the initial reviewing process, both studies available in full-text and abstract format will be considered for review. This will ensure that the most up-to-date evidence is not missed (Boland et al., 2017). Any literature that does not present data meeting the inclusion criteria will be excluded.

Only peer-reviewed papers that have been published within academic journals will be included in this scoping review. Literature reviews, case studies, individual case reports, opinion pieces, commentaries, editorials, and conference abstracts will be excluded from the review, based on resource availability to the primary researcher (MK), including a limited amount of time and funding to undertake the review as part of an academic degree. Furthermore, the inclusion of primary, peer-reviewed studies has been selected, as the authors seek to understand how the interventions identified were developed. Developing this understanding of the theoretical and methodological underpinning of the intervention’s development will support the authors in the next phase of the research study. Nonetheless, the authors recognise the importance of including grey literature in scoping reviews. Given that the authors primary PhD study will be conducted in the context of the Irish healthcare setting, national grey literature will be sourced and included in the discussion of the scoping review, to compare the international interventions sourced with those used within the Irish healthcare setting.

Search strategy

The formulation of a search strategy is invaluable and must be transparent, accountable, and replicable, ensuring a systematic process is followed (Gough et al., 2017). A comprehensive search strategy was developed by the primary researcher in consultation with an expert librarian (DS) with experience in undertaking literature searches and using thesaurus tools (Table 2). To develop the search strategy, an initial scoping search was conducted in the databases CINAHL Plus with Full Text, PubMed, Applied Social Sciences Index and Abstracts, PsycINFO, Web of Science and Embase on the 2^nd March 2023. This identified articles relevant to the topic. Free-text words and subject headings/index terms were located from titles, abstracts, and main texts of articles, and were used to further enrich and inform the search strategy (Boland et al., 2017).

Table 2. Search strategy.

Research question themes	Search terms
Population	“young people” OR youth* OR adolescen* OR teen* OR “young person” OR juvenile OR child* OR kid OR kids OR minor* OR pre-adult* OR preadult* OR “pre adult” OR “young adult” OR child-hood OR pubescen* OR puberty OR “emerging adult” OR pediatric OR paediatric*
Concept	intervention* OR program* OR tool* OR model* OR scale* OR framework* OR clinic* OR e-health* OR mHealth* OR eHealth* OR m-health* OR “mobile health” OR “electronic health” OR “digital health” OR digi OR digi-health OR procedure* OR protocol* OR pathway* OR manual* OR strateg* OR measure* OR application* OR app OR apps OR “mobile application” OR “mobile health application” OR workshop* OR recommendation* OR support* OR instrument* OR website* OR web OR guide* OR guidance OR activit* OR mechanism* OR approach* OR method* OR scheme* OR digital-health* OR software* OR telemedicine OR “tele medicine” OR tele-medicine OR telenursing OR “tele nursing” OR tele-nursing OR telecare OR tele-care OR “tele care” OR telehealth* OR tele-health* OR “tele health” OR policy OR policies OR resource OR initiative* OR curriculum* AND transition* OR “transfer to adult care” OR “transfer from pediatric to adult care” OR “transfer from paediatric to adult care” OR “transfer to adult health” OR “transfer care” OR “care transfer” OR “healthcare transfer” OR “health-care transfer” OR “health transfer” OR “medical transfer” OR “patient transfer” OR “care coordination” OR “care co- ordination” OR “co-ordination of care” OR “coordination of care” OR “care continuum” OR “continuum of care” OR “patient handoff” OR “clinical handover” OR “continuity of care” OR “continuity of patient care” OR “care continuity” OR “healthcare continuity” OR “health-care continuity” AND “healthcare setting” OR “health care setting” OR “health-care setting” OR “health care facilit” OR “health-care facilit” OR “health care service” OR “healthcare service” OR “health service” OR “health-care service” OR hospital OR clinic* OR outpatient* OR “emergency department” OR “emergency room” OR “emergency service” OR “emergency medical service” OR ward* OR inpatient* OR “tertiary health” OR “tertiary care” OR “tertiary referral cent” OR ED OR ER OR “A&E” OR in-patient* OR out-patient* OR “secondary health” OR “secondary care” OR “secondary referral cent” OR “ambulatory care” OR “ambulatory health” OR “acute care” OR “acute service” OR “acute health” OR “emergency care” OR “accident and emergency” OR “health facilit” OR “healthcare facilit” OR “paediatric unit” OR “pediatric unit” OR “care unit” OR ICU OR PICU
Context	renal OR kidney* OR nephrol* OR dialysis OR haemodialysis OR hemodialysis OR allograft* OR graft* OR transplant* OR “renal replacement therapy” OR “kidney replacement therapy”

Thesaurus tools, subject headings and synonyms were utilised and shared across databases to maximise search results. Furthermore, the use of truncation was utilised (Gough et al., 2017). The search strategy encompasses the use of Boolean operators, subject headings and free-text headings for each database. The librarian (DS) will provide support and assistance to the primary researcher when carrying out searches of the databases.

Furthermore, the literature search strategy utilised will be reported in the scoping review, within a table in the appendix, to ensure easy replication by others (Tricco et al., 2018). The search strategy is iterative (Gough et al., 2017). Therefore, any modifications or adjustments to the search strategy as the review progresses, will be clearly documented to ensure transparency in searching. Databases will be limited to the year 2000, ensuring that the results portray relevant interventions that consider medical and technological advancements within the realm of healthcare over the past two decades. Furthermore, only peer-reviewed literature will be included in the scoping review.

To ensure a comprehensive mapping of the literature, a broad range of databases will be searched. The databases that will be searched include: (1) health databases, including PubMed, CINAHL Plus with Full Text and Embase; (2) social sciences databases, including PsycInfo and ASSIA; and (3) multidisciplinary databases, including Web of Science.

The rationale for searching these particular databases is justified and will ensure that the results portray the breadth of evidence available. Furthermore, the databases selected encompass health, social sciences and multidisciplinary databases. These databases have been chosen strategically, as transitional care requires a multi-disciplinary approach, and must include not only physical support, but also psychosocial support (Aymé et al., 2017). Therefore, it is essential to not only include health databases, but also social sciences and multidisciplinary databases. The author will not undertake complementary search techniques, including bibliographic searching and hand searching, in addition to searching databases due to the time restrictions of the primary author to complete the review in a timely manner as a component of their academic degree.

Stage three: Study selection

Each search will be documented systematically, including the date, search terms, and the results per search string. Following the literature search, all results obtained through the databases will be collated and imported into a bibliographic reference manager EndNote 20. All imported results will be dated and saved to individual libraries, depending upon which database they were collected from. This enables the authors to keep a record and manage their search results. Following the import of the results to EndNote 20, all duplicates will be removed.

The number of articles retrieved following these steps will be added to the PRISMA-ScR flowchart, as recommended by the JBI (Peters et al., 2020) (Figure 1). Furthermore, a PRISMA-ScR flowchart will be completed following the completion of each search to ensure transparency when mapping the number of records identified and to provide a rationale as to why studies were excluded (Page et al., 2021).

Figure 1. PRISMA 2020 Flowchart for Scoping Review (Page et al., 2021).

Search results from EndNote will be imported for further screening and reviewing in Covidence systematic review screening and data extraction software tool (Covidence, 2022). Once complete, the screening and data extraction process can commence. This process will be undertaken in three steps: (1) title and abstract screening; (2) full-text review; (3) data extraction in Covidence. Following the removal of duplicates, screening will be performed. The titles and abstracts of all studies obtained will be screened against the inclusion and exclusion criteria (Boland et al., 2017). Two reviewers will screen all results independently (at both title and abstract and full text stage), before being included or excluded in the review. This reduces bias and makes the review process more robust (Boland et al., 2017).

A pilot testing of the literature obtained (n=100) will be undertaken using Covidence software with the inclusion and exclusion criteria inputted to the software tool at both screening stages to ensure that all reviewers are satisfied with the criteria, and so as relevant amendments can be made if required. Undertaking a pilot test of the screening process is recommended by Peters et al. (2020). This process will be transparent, and document all decisions made surrounding which literature was included or excluded and a rationale for inclusion or exclusion. Covidence will support this process by tracking/logging decisions made throughout the process. Any discrepancies or lack of consensus between authors during the screening process will result in the second author (TK) being consulted and adjudicating. Furthermore, if any missing data is noted within papers, the authors will be contacted by the primary author (MK). This will ensure maximum retrieval of full-text papers when there is no full report available online.

Stage four: Data charting

In scoping reviews, data extraction is often referred to as “data charting” (JBI, 2022). Data charting will be undertaken using a version of the JBI data extraction tool, referred to as a charting table, modified by the authors to fit the objectives of the scoping review (Table 3) (Peters et al., 2020). An example of the data charting tool will be included in the appendix. This charting form will be piloted on two articles by two independent authors, on articles chosen at random.

Table 3. Sample data charting form.

Data chart heading	Description
Author(s)/Year	Name of author(s)/The year that the article was published
Title of article	Title of the article or study
Origin/Country of Origin	Where the article/study was published/conducted
Study Aims/Purpose	The aims of the study
Population and sample size	Population/sample size within evidence
Research Design/ Methodology	Research methods/design/techniques employed
Quality Appraisal	Critical appraisal through appraisal tools
Data Analysis	Analysis of the data
Study setting	The setting the study was conducted in
Intervention type	Details surrounding the intervention and its duration (if applicable)
Co-Design	Were AYAs/Families involved in the interventions design?
Experiences	What was the experience of the AYAs/families surrounding the named intervention? What were the barriers/enablers of the named intervention?
Findings/Conclusion	Important findings from the research, including strengths and limitations of the study/intervention, areas for future research/ gaps in the knowledge and any important aspects of the conclusion

This tool may be further refined in the subsequent review during the data charting process, as the review progresses. Modifications will be detailed in the scoping review for transparency in reporting. The data that will be charted includes details surrounding the population, concept, context, study methodology, quality appraisal, and findings that are significant to the review’s aims and objectives. We will also chart information on the interventions including their use and whether the intervention was co-designed with AYAs and families. The preliminary data charting process will be undertaken by the primary author (MK) and will be audited and reviewed by the fourth author (SS). Once both the first and fourth author reach consensus on the data charting table, it will be made available for all authors involved in the review through the utilisation of a shared Google drive. The table will be discussed with all other reviewers to seek their feedback and make further refinements, as necessary until all authors reach consensus.

Quality appraisal

Though optional, for the scoping review a quality appraisal will be undertaken, using the Mixed Methods Appraisal Tool (MMAT) (Hong et al., 2018) and the Critical Appraisal Skills Programme (CASP) (Critical Appraisal Skills Programme, 2022). Quality appraisal or critical appraisal is defined as a process whereby research is evaluated carefully and systematically in terms of the trustworthiness, relevance, and value of the research (Burls, 2014). This process has been identified as a process that will improve the quality of the study through careful evaluation of the research studies retrieved in terms of their methodological quality.

Stage five: Collating, summarising and reporting results

The results of the literature search and screening process will be presented within a PRIMSA-ScR flow diagram (Peters et al., 2020). Key constructs will be summarised through descriptive content analysis by the authors, in line with the JBI guidance, which advocates that scoping reviews should only incorporate basic descriptive analysis (Peters et al., 2020).

Quantitative studies retrieved will be analysed using basic frequency counts of concepts, populations, and study locations, followed by a narrative summary (Peters et al., 2020). The purpose for providing frequency accounts of study locations, concepts and populations is to enable the author to map the geographical areas and populations that are most represented in the current literature. This will further identify gaps in the literature and prioritise areas for future research. Qualitative studies will be summarised through descriptive content analysis by the authors (Peters et al., 2020). Basic data coding data will be undertaken by the authors to categorise data and enable identification and clarification of concepts or definitions within the field (Peters et al., 2020).

The "PAGER" framework will be utilised as a framework to summarise and report the results of the review. This tool provides a standardised approach to analysing, reporting and synthesising scoping review findings, and is based on ‘patterns’, ‘advances’, ‘gaps’, ‘evidence for practice’ and ‘research recommendations’ found within the literature (Bradbury-Jones et al., 2022). Recommendations for future research will be presented relative to the scoping review findings. The results of the review will be discussed between the authors to further enhance, validate and add meaning to the results obtained. The results of the review will be presented in the form of diagrams, tables, graphs and a narrative summary of the findings. The authors will be transparent and explicit in their approach to data analysis, summarising and reporting the scoping review results, and will document all decisions made throughout the review, as recommended by Peters et al. (2020).

Stage six: Consultation

Consultation for this scoping review will be undertaken in the form of an expert reference panel that will be invited to discuss the reviews findings and the implications for practice. Reviewers will consult with and invite experts from Universities and Healthcare Settings in both Northern Ireland and the Republic of Ireland to act as an expert panel for this review. It is anticipated that this panel will include individuals with expertise in transitional care, paediatric nephrology multidisciplinary teams, and staff members from the world of academia. Furthermore, and importantly, the review results will be distributed to public and patient involvement (PPI) groups, including AYAs with renal disorders and families who will be invited to provide feedback on the results of the review. This review is part of a larger PhD study, which is being undertaken by the primary reviewer (MK), and the scoping review will feed into the design of the primary research study.

Dissemination plans for completed scoping review

Various dissemination strategies will be employed following the completion of this scoping review. The results of the scoping review will be shared amongst various academic institutions both within the Republic of Ireland and Northern Ireland. The results will be shared with multi-disciplinary teams within both adult and paediatric clinical settings on a national level that care for AYAs with renal disorders undergoing transition. The results will also be shared with PPI groups, including young people and families living with renal disorders that have experienced the healthcare transition process. The authors will engage with these teams and population groups to share and discuss the review findings and interpretations and to gather their perspective on the findings obtained from the review. The primary author will also strive to present the findings of this scoping review, through oral and poster presentations, at local, national, and international conferences, as can be facilitated. Finally, post completion of the scoping review, the author will seek publication in a peer reviewed journal, such as the Journal of Pediatric Nursing. Publication in a peer-reviewed academic journal is an excellent means of reaching and sharing findings with relevant academic, clinical and research audiences (Boland et al., 2017).

Study status

This scoping review is currently at stage four: data charting. Database searches and screening have been completed.

Conclusions

For AYAs and families living with renal disorders, the transition from paediatric to adult healthcare can be challenging. Transition is often associated with risk, health status deterioration and psychological and social stress. There is an urgent need to better understand the interventions that support AYAs living with renal disorders to obtain the required competencies to support transition to the adult healthcare setting. This scoping review will explore what is known about such interventions to promote patient satisfaction and improve patient outcome measures and experiences.

The results will synthesise the theoretical and empirical evidence available. These findings may assist with the future development of transitional care interventions for AYAs with renal disorders. This scoping review is part of a larger PhD project examining the current transition care available for AYAs and families living with renal disorders. The results will be invaluable to feed into the research project and gain a better understanding of the interventions utilised during the transition process for this cohort of patients. The findings of this review will seek publication in a peer-reviewed journal, and may be presented at local, national, and international conferences, and shared with nephrologists, the wider multidisciplinary team, researchers, AYAs and families through rare disease and renal organisations.

Data availability

Underlying data

No data are associated with this article.

Acknowledgements

This scoping review is a phase within a larger PhD degree study that will be undertaken by the first author (MK).

Faculty Opinions recommended

References

Akchurin OM, Melamed ML, Hashim BL, et al.: Medication adherence in the transition of adolescent kidney transplant recipients to the adult care. Pediatr Transplant. 2014; 18(5): 538–548. PubMed Abstract | Publisher Full Text | Free Full Text
American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine: A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002; 110(6 Pt 2): 1304–1306. PubMed Abstract
Arksey H, O’Malley L: Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005; 8(1): 19–32. Publisher Full Text
Aymé S, Bockenhauer D, Day S, et al.: Common Elements in Rare Kidney Diseases: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int. 2017; 92(4): 796–808. PubMed Abstract | Publisher Full Text | Free Full Text
Barbero GJ: Leaving the Pediatrician for the Internist. Ann Intern Med. 1982; 96: 673–674. Publisher Full Text
Bassanese G, Wlodkowski T, Servais A, et al.: The European Rare Kidney Disease Registry (ERKReg): objectives, design and initial results. Orphanet J Rare Dis. 2021; 16(1): 251. PubMed Abstract | Publisher Full Text | Free Full Text
Bell L: Adolescent dialysis patient transition to adult care: a cross-sectional survey. Pediatr Nephrol. 2007; 22(5): 720–726. PubMed Abstract | Publisher Full Text
Bell LE: The Transition of a Pediatric Kidney Transplant Recipient from Childhood to Adult Care. Clin J Am Soc Nephrol. 2022; 17(5): 736–738. PubMed Abstract | Publisher Full Text | Free Full Text
Betz CL, Nehring WM, Lobo ML: Transition Needs of Parents of Adolescents and Emerging Adults With Special Health Care Needs and Disabilities. J Fam Nurs. 2015; 21(3): 362–412. PubMed Abstract | Publisher Full Text
Blum RW, Garell D, Hodgman CH, et al.: Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993; 14(7): 570–576. PubMed Abstract | Publisher Full Text
Boland A, Cherry MG, Dickson R: Doing a Systematic Review: A Student’s Guide. 2nd edn. London: SAGE publications, 2017; 2–242. Reference Source
Bradbury-Jones C, Aveyard H, Herber OR, et al.: Scoping reviews: the PAGER framework for improving the quality of reporting. Int J Soc Res Methodol. 2022; 25(4): 457–470. Publisher Full Text
Burls A: What is critical appraisal? Hayward Medical Communications, 2014; (Accessed 19 January 2023). Reference Source
Callinan J, Coyne I: Arts-based interventions to promote transition outcomes for young people with long-term conditions: A review. Chronic Illn. 2020; 16(1): 23–40. PubMed Abstract | Publisher Full Text
Campbell F, Biggs K, Aldiss SK, et al.: Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev. 2016; 16(4): CD009794. PubMed Abstract | Publisher Full Text
Catarino M, Charepe Z, Festas C: Promotion of Self-Management of Chronic Disease in Children and Teenagers: Scoping Review. Healthcare (Basel). 2021; 9(12): 1642. PubMed Abstract | Publisher Full Text | Free Full Text
Çiçek N, Alpay H: The transition of adolescents to adult nephrology care: A survey on young adults’ experience. J Ist Faculty Med. Istanbul University Press, 2022; 85(1): 86–90. Publisher Full Text
Covidence: Covidence. 2022; (Accessed 18 January 2023). Reference Source
Crawford K, Wilson C, Low JK, et al.: Transitioning adolescents to adult nephrology care: a systematic review of the experiences of adolescents, parents, and health professionals. Pediatr Nephrol. 2020; 35(4): 555–567. PubMed Abstract | Publisher Full Text
Critical Appraisal Skills Programme (CASP): Critical Appraisal Skills Programme. 2022; (Accessed 18 January 2023). Reference Source
Dallimore DJ, Neukirchinger B, Noyes J: Why is transition between child and adult services a dangerous time for young people with chronic kidney disease? A mixed-method systematic review. PLoS One. 2018; 13(8): e0201098. PubMed Abstract | Publisher Full Text | Free Full Text
Devuyst O, Knoers NV, Remuzzi G, et al.: Rare inherited kidney diseases: challenges, opportunities, and perspectives. Lancet. 2014; 383(9931): 1844–1859. PubMed Abstract | Publisher Full Text | Free Full Text
Dobbels F, Ruppar T, De Geest S, et al.: Adherence to the immunosuppressive regimen in pediatric kidney transplant recipients: A systematic review. Pediatr Transplant. 2010; 14(5): 603–613. PubMed Abstract | Publisher Full Text
Dobbels F, Vanhaecke J, Dupont L, et al.: Pretransplant predictors of posttransplant adherence and clinical outcome: an evidence base for pretransplant psychosocial screening. Transplantation. 2009; 87(10): 1497–1504. PubMed Abstract | Publisher Full Text
Ferris ME, Gipson DS, Kimmel PL, et al.: Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol. 2006; 21(7): 1020–1026. PubMed Abstract | Publisher Full Text
Foster BJ: Heightened graft failure risk during emerging adulthood and transition to adult care. Pediatr Nephrol. 2015; 30(4): 567–576. PubMed Abstract | Publisher Full Text
Foster BJ, Bell L: Improving the Transition to Adult Care for Young People with Chronic Kidney Disease. Curr Pediatr Rep. 2015; 3: 62–70. Publisher Full Text
Gabriel P, McManus M, Rogers K, et al.: Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review. J Pediatr. 2017; 188: 263–269.e15. PubMed Abstract | Publisher Full Text
Gough D, Oliver S, Thomas J: Introduction to Systematic Reviews. 2nd edn. Los Angeles: SAGE publications, 2017; 1–294. Reference Source
Hong QN, Fàbregues S, Bartlett G, et al.: The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Educ Inform. 2018; 34(4): 285–291. Publisher Full Text
Joanna Briggs Institute (JBI): Resources. 2022; (Accessed 8 November 2022). Reference Source
Joly D, Béroud C, Grünfield JP: Rare inherited disorders with renal involvement-approach to the patient. Kidney Int. 2015; 87(5): 901–908. PubMed Abstract | Publisher Full Text
Kralik D, van Loon A: Transitional Processes and Chronic Illness. In: Kralik D, Paterson B, Coates V (ed.): Translating Chronic Illness Research into Practice. West Sussex: Wiley-Blackwell. Blackwell Publishing Limited, 2010; 1–204.
Kreuzer M, Drube J, Prüfe J, et al.: Current Management of transition of young people affected by rare renal conditions in the ERKNet. Eur J Hum Genet. 2019; 27(12): 1783–1790. PubMed Abstract | Publisher Full Text | Free Full Text
Levac D, Colquhoun H, O’Brien KK: Scoping studies: advancing the methodology. Implement Sci. 2010; 5: 69. PubMed Abstract | Publisher Full Text | Free Full Text
Levay P, Craven J: Systematic searching: practical ideas for improving results. London: Facet Publishing, 2019; 217–218. Reference Source
Lewis MA, Shaw J, Sinha M, et al.: UK Renal Registry 11^th Annual Report (December 2008): Chapter 13 Demography of the UK paediatric Renal Replacement Therapy population. Nephron Clin Pract. 2009; 111(1): 257–267. Publisher Full Text
Ma J, Qinglin Y, Wenwen D, et al.: Psychometric properties of the 'Self-Management and Transition to Adulthood with R_x = Treatment Questionnaire’ in Chinese Children and young people with chronic diseases. Int J Nurs Pract. 2021; 27(2): e12880. PubMed Abstract | Publisher Full Text
Marks SD: Transition of Adolescents with Nephrological Conditions. Primer on Nephrology. 2022; 1175–1180. Publisher Full Text
Matsuda-Abedini M, Marks SD, Foster BJ: Transition of young adult kidney transplant recipients. Pediatr Nephrol. 2023; 38(2): 383–390. PubMed Abstract | Publisher Full Text
Mazzucato M, Pozza LVD, Minichiello C, et al.: The Epidemiology of Transition into Adulthood of Rare Diseases Patients: Results from a Population-Based Registry. Int J Environ Res Public Health. 2018; 15(10): 2212. PubMed Abstract | Publisher Full Text | Free Full Text
Miller C: Using technology to bridge the transition from pediatric to adult health care. J Am Assoc Nurse Pract. 2022; 34(6): 850–858. PubMed Abstract | Publisher Full Text
Page MJ, McKenzie JE, Bossuyt PM, et al.: The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021; 372: n71. PubMed Abstract | Publisher Full Text | Free Full Text
Paone MC, Wigle M, Saewyc E: The ON TRAC model for transitional care of adolescents. Prog Transplant. 2006; 16(4): 291–302. PubMed Abstract | Publisher Full Text
Peters MDJ, Godfrey CM, Khalil H, et al.: Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015; 13(3): 141–146. PubMed Abstract | Publisher Full Text
Peters MDJ, Marnie C, Tricco AC, et al.: Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth. 2020; 18(10): 2119–2126. PubMed Abstract | Publisher Full Text
Piccoli G, Crochette R, Versino E, et al.: Transition care from childhood to adulthood in chronic kidney disease, dialysis and kidney transplantation. National Institute for Health Research: Prospero. 2020; (Accessed 5 January 2023). Reference Source
PROSPERO: Prospero. 2022; (Accessed 24 January 2023). Reference Source
Prüfe J, Dierks ML, Bethe D, et al.: Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study. BMJ Open. 2017; 7(6): e015593. PubMed Abstract | Publisher Full Text | Free Full Text
Prüfe J, Pape L, Kreuzer M: Barriers to the Successful Health Care Transition of Patients with Kidney Disease: A Mixed-Methods Study on the Perspectives of Adult Nephrologists. Children (Basel). 2022; 9(6): 803. PubMed Abstract | Publisher Full Text | Free Full Text
Quaglia M, Musetti C, Ghiggeri GM, et al.: Unexpectedly high prevalence of rare genetic disorders in kidney transplant recipients with an unknown causal nephropathy. Clin Transplant. 2014; 28(9): 995–1003. PubMed Abstract | Publisher Full Text
Raina R, Wang J, Krishnappa V, et al.: Pediatric Renal Transplantation: Focus on Current Transition Care and Proposal of the "RISE to Transition" Protocol. Ann Transplant. 2018; 23: 45–60. PubMed Abstract | Publisher Full Text | Free Full Text
Riccio E, Zanfardino M, Ferreri L, et al.: Switch from enzyme replacement therapy to oral chaperone migalastat for treating fabry disease: real-life data. Eur J Hum Genet. 2020; 28(12): 1662–1668. PubMed Abstract | Publisher Full Text | Free Full Text
Shaw KL, Baldwin L, Heath G: 'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care. J Child Health Care. 2021; 25(2): 305–319. PubMed Abstract | Publisher Full Text
Stepien KM, Kieć-Wilk B, Lampe C, et al.: Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases: Results From the First Multi-Center European Survey. Front Med (Lausanne). 2021; 8: 652358. PubMed Abstract | Publisher Full Text | Free Full Text
Tareen RS, Tareen K: Psychosocial aspects of diabetes management: dilemma of diabetes distress. Transl Pediatr. 2017; 6(4): 383–396. PubMed Abstract | Publisher Full Text | Free Full Text
Tricco AC, Lillie E, Zarin W, et al.: PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018; 169(7): 467–473. PubMed Abstract | Publisher Full Text
Upchurch M: Gender Bias in Research. In: Companion to Women's and Gender Studies. N.A. Naples (Ed.). 2020. Publisher Full Text
Watson AR: Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol. 2005; 20(2): 113–117. PubMed Abstract | Publisher Full Text
Watson AR, Harden PN, Ferris ME, et al.: Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Kidney Int. 2011; 80(7): 704–707. PubMed Abstract | Publisher Full Text
Wildes DM, Costigan CS, Kinlough M, et al.: Transitional care models in adolescent kidney transplant recipients-a systematic review. Nephrol Dial Transplant. 2023; 38(1): 49–55. PubMed Abstract | Publisher Full Text
Willis ER, McDonagh JE: Transition from children's to adults' services for young people using health or social care services (NICE Guideline NG43). Arch Dis Child Educ Pract Ed. 2018; 103(5): 253–256. PubMed Abstract | Publisher Full Text
Young NL, Rochon TG, McCormick A, et al.: The health and quality of life outcomes among youth and young adults with cerebral palsy. Arch Phys Med Rehabil. 2010; 91(1): 143–148. PubMed Abstract | Publisher Full Text

Comments on this article Comments (0)

Version 3

VERSION 3 PUBLISHED 02 Feb 2023

Author details Author details

¹ School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Dublin 4, Ireland

Thilo Kroll
Roles: Conceptualization, Formal Analysis, Methodology, Project Administration, Resources, Supervision, Validation, Visualization, Writing – Review & Editing

Diarmuid Stokes
Roles: Methodology, Software, Writing – Review & Editing

Suja Somanadhan
Roles: Conceptualization, Formal Analysis, Methodology, Project Administration, Resources, Supervision, Validation, Visualization, Writing – Review & Editing

Competing interests

No competing interests were disclosed.

Grant information

This work is supported by University College Dublin. The review is being undertaken as part of a greater PhD study by the primary reviewer (MK), and is supported by the University College Dublin, School of Nursing, Midwifery and Health Systems PhD Nursing Scholarship 2022 (grant number: COV19-2020-017, assigned to the fourth author Dr. Suja Somanadhan).
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Article Versions (3)

version 3

Revised

Published: 30 Oct 2023, 6:9

https://doi.org/10.12688/hrbopenres.13684.3

version 2

Revised

Published: 27 Jul 2023, 6:9

https://doi.org/10.12688/hrbopenres.13684.2

version 1

Published: 02 Feb 2023, 6:9

https://doi.org/10.12688/hrbopenres.13684.1

© 2023 Kinch M et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Download

Export To

metrics

VIEWS

1884

downloads

115

Citations

SEE MORE DETAILS

CITE

how to cite this article

Kinch M, Kroll T, Stokes D and Somanadhan S. Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol [version 2; peer review: 2 approved]. HRB Open Res 2023, 6:9 (https://doi.org/10.12688/hrbopenres.13684.2)

NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.

track

receive updates on this article

Track an article to receive email alerts on any updates to this article.

Open Peer Review

Version 2

VERSION 2

PUBLISHED 27 Jul 2023

Revised

Views

Reviewer Report 18 Aug 2023

Alison Luke, The University of New Brunswick (UNB) Saint John Collaboration for Evidence-Informed Healthcare: A JBI Centre of Excellence, University of New Brunswick Saint John, Saint John, New Brunswick, Canada

Approved

https://doi.org/10.21956/hrbopenres.15065.r35446

Thank you for the opportunity to review the updated version of this review protocol. The protocol reads very well. I also thank the authors for addressing all of my comments. I only have a couple of minor comments/edits.

1) On page 4 (Background) there are a few places where paragraphs start with "Moreover" (used twice) and "Hence". Typically you should not begin a paragraph with these words as they are used to build on an argument. I recommend removing these words and adjust the first sentence accordingly.

2) Under "Objectives" you use the word "To" before understand for your forth objective. I would remove the "To" for consistency.

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: I do research in health service delivery with a focus on models of care that support improved care integration. I have done research in the area of transition from paediatric to adult care for children and youth with complex care needs.

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

CITE

Report a concern

Author Response 30 Oct 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

30 Oct 2023

Author Response

The authors would like to thank you once again for your invaluable feedback on this scoping review protocol. We have taken your feedback on board and made the relevant changes. ... Continue reading The authors would like to thank you once again for your invaluable feedback on this scoping review protocol. We have taken your feedback on board and made the relevant changes. The primary author (MK) has revised the scoping review protocol and made relevant grammatical and sentence structure amendments throughout the entire scoping review to ensure clarity.
The authors would like to thank you once again for your invaluable feedback on this scoping review protocol. We have taken your feedback on board and made the relevant changes. The primary author (MK) has revised the scoping review protocol and made relevant grammatical and sentence structure amendments throughout the entire scoping review to ensure clarity.
Competing Interests: No competing interests to disclose. Close
Report a concern
Respond or Comment

COMMENTS ON THIS REPORT

Author Response 30 Oct 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

30 Oct 2023

Author Response

The authors would like to thank you once again for your invaluable feedback on this scoping review protocol. We have taken your feedback on board and made the relevant changes. ... Continue reading The authors would like to thank you once again for your invaluable feedback on this scoping review protocol. We have taken your feedback on board and made the relevant changes. The primary author (MK) has revised the scoping review protocol and made relevant grammatical and sentence structure amendments throughout the entire scoping review to ensure clarity.
The authors would like to thank you once again for your invaluable feedback on this scoping review protocol. We have taken your feedback on board and made the relevant changes. The primary author (MK) has revised the scoping review protocol and made relevant grammatical and sentence structure amendments throughout the entire scoping review to ensure clarity.
Competing Interests: No competing interests to disclose. Close
Report a concern

Version 1

VERSION 1

PUBLISHED 02 Feb 2023

Views

Reviewer Report 27 Jun 2023

Approved with Reservations

https://doi.org/10.21956/hrbopenres.14965.r34084

Thank you for the opportunity to review this scoping review protocol. I think the review will be an important addition to the transition literature.

Please find below some feedback and edits.

In the

Thank you for the opportunity to review this scoping review protocol. I think the review will be an important addition to the transition literature.

Please find below some feedback and edits.

In the introduction, the second sentence “...and the improved management…” I would remove the “the” and maybe add “…and improved disease management.”
Also remove “the” and “of patients” in this sentence “…and improved life expectancy.”
In the sentence “Hence, more patients are required to undergo the this healthcare transition.” Please remove the “the”.
In the methods section in the second paragraph, “Experts in…” I am unclear why the author is including the specific disciplines listed. Maybe you could say that you will, include “researchers from various academic disciplines who have conducted research in this area.”
Under Aims and Objectives, I felt like this section was very broad. I am also unfamiliar with presenting a protocol this way (I typically follow the JBI template).

I am wondering why the authors do not mention that descriptive papers could be included as this would provide the authors with information on existing programs or interventions. If this were to be included, there would not be a “methodology”. Scoping reviews typically cast a wide net. If the goal is to map the literature on programs or interventions that support the transition from pediatric to adult healthcare for this population, the research methods or findings from a particular study could be important (would be included if present) but is it the main goal of this review? Are the authors more interested in mapping the existence of programs or are you only interested in studies that look at experiences, barriers, facilitators etc.?
Typically, when we do scoping reviews, we are interested in mapping existing programs, but we also include (often as a secondary concept) and findings on experiences, barriers, facilitators etc). I also see that one aim is to “clarify the concept of transitional care.” My concern here is that this is really beyond the scope of this review. This could be a stand alone concept analysis. Upon reading through the rest of the protocol, I do not see any mention of this and wondering what data will be extracted to address this objective. If you do want to keep it in, then you need to extract data around how authors from included articles define the concept.

The research question asks “What is the evidence base…” I am unclear what you mean by evidence base for this context?
Why is grey literature being excluded? I think later on you say that it will be due to time constraints. Given scoping reviews are meant to cast a wide net, I think it is important to include grey literature if possible.
Under the context section, I am unclear if programs or interventions offered in community would be included? If not why? Again, if you are interested in capturing programs that support this transition, I would think you want to be broad so you do not miss any?
I am unclear why the authors will be doing quality appraisals. This is not typically done with scoping reviews.
Under study selection section, in the paragraph that starts with “Search results from EndNote...” The authors provide a list for data extraction. I am wondering why each step is capitalized?
The screening process needs to be better clarified. The authors note that 2 reviewers will be used for initial title and abstract screening, but it also needs to be clear that there needs to be 2 screeners for the full text screening as well as the data extraction process.
In the paragraph that begins with “A pilot testing of literature obtained...” I am unclear what is being referred to here. Please clarify.
In the paragraph on data charting, please include a specific list of what data will be extracted (I see this in the table, but I think needs to be here as well). In the table for data extraction, I would not have a separate category for experiences as this would be included in findings.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests: No competing interests were disclosed.

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

CITE

Report a concern

Author Response 03 Aug 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

03 Aug 2023

Author Response

The authors sincerely thank you for taking the time to provide valuable and insightful feedback for the proposed scoping review. We have taken all your suggestions and made the relevant ... Continue reading The authors sincerely thank you for taking the time to provide valuable and insightful feedback for the proposed scoping review. We have taken all your suggestions and made the relevant amendments to the scoping review protocol. We are in agreement that your suggestions and feedback have enriched and strengthened the scoping review and express our appreciation. Below, we have provided a response to each piece of constructive feedback in order:

1. The authors have revised the background section to ensure grammatical errors are corrected and that the appropriate terminology is utilised and is consistent throughout.

2. As recommended, the second paragraph of the methods section has been revised to include only various multi-disciplinary researchers with expertise in healthcare transition.

3. The aims and objectives of the scoping review have been revised completely in version two to improve the manageability of the scoping review. The authors recognise that this section was initially very broad and have revised it as recommended.

4. The authors have decided to only include primary, peer-reviewed research studies so that they can understand how such programmes or interventions were developed or experienced by the end-users, i.e., what specific methodology or methods were used or studies that refer to experiences of named and described interventions. This will help to inform the next phase of the primary researchers overall study. Nonetheless, descriptive studies that provide information on existing programmes or interventions will be included and acknowledged in the scoping review's discussion section.

The scoping review aims to understand, map, and synthesise what interventions are available to support the healthcare transition. However, the scoping review will also map the qualitative studies, which refer to experiences, barriers, and facilitators of named interventions.

5. The aim that was initially proposed surrounding clarifying the definition of transitional care has been removed. The authors recognise that this may be beyond the scope of the review and that it may be more appropriate to undertake a concept analysis to truly understand the concept.

6. The authors initially utilised the phrase “evidence base” in the review question, as they wanted to ensure that the posed review question appropriately addressed all aims of the review. For example, to ensure that the scoping review question encompassed not only identifying the available interventions but also the studies that refer to experiences of such interventions. Therefore, the authors aim to synthesise all the evidence on the interventions to support the healthcare transition within the context of nephrology services. Nonetheless, the authors have taken your feedback, clarified the research question, and removed the phrase “evidence base”.

7. The authors recognise the importance of mapping the full extent of literature available for the scoping review. As acknowledged, the primary researcher is bound by time constraints to complete the scoping review promptly as a component of their academic degree. Therefore, the authors have decided to include national grey literature surrounding transitional care, including policies, models of care, etc., within the discussion section of the scoping review to contextualise the interventions that are identified and the experiences of these interventions within the context of the Irish healthcare system where the primary author’s research study into the area will be undertaken.

8. The authors focus specifically on interventions offered within secondary and tertiary healthcare services, as the primary author’s research study will be conducted in this area. Therefore, the results of the scoping review will be utilised to inform the subsequent phases of the research study. Nonetheless, at least one community-based intervention was recognised from the full-text screening process and will be mentioned in the discussion section of the review.

9. Though optional in a scoping review, the authors have decided to undertake quality appraisals on the research studies identified. This has been recognised as a step that will enhance the review by providing the reviews readership with the quality of the studies obtained and will ensure that the results of the studies obtained are reliable and trustworthy, as it is proposed that this scoping review will be presented to and discussed with academics and healthcare professionals, young people, and families with experience of healthcare transition. Furthermore, this scoping review will inform the next phase of the research study.

10. The capitalisation has been removed to ensure consistency in writing. Furthermore, key concepts have been clarified in line with your recommendations.

11. The screening process has been completely revised to improve clarity. Two reviewers will undertake the complete screening process independently (title and abstract & full text screening). The primary author (MK) will conduct the preliminary data extraction independently due to resource and time constraints to complete the scoping review as part of an academic degree. Nonetheless, this process will be closely supervised and audited by the fourth author (SS), who will supervise, clarify, and agree on the data charting table before sharing the table with all other authors, refining the table based upon their feedback and reaching a consensus on the data that has been charted.

12. The pilot testing of the literature refers to a pilot testing of the screening process, with the inclusion and exclusion criteria inputted to ensure consistency between reviewers undertaking the screening process. If required, relevant amendments or modifications to the criteria can be made at this stage

13. A specific list of the data extracted during the data charting process has been included. Minor amendments have been made to the data charting form as the review process has progressed.
The authors have included a separate category for experiences in the data chart because some literature that will be included may solely focus on the experiences of an intervention, whereas other papers may describe the intervention and how it was designed but not refer to the experiences of the intervention.
The authors sincerely thank you for taking the time to provide valuable and insightful feedback for the proposed scoping review. We have taken all your suggestions and made the relevant amendments to the scoping review protocol. We are in agreement that your suggestions and feedback have enriched and strengthened the scoping review and express our appreciation. Below, we have provided a response to each piece of constructive feedback in order:

1. The authors have revised the background section to ensure grammatical errors are corrected and that the appropriate terminology is utilised and is consistent throughout.

2. As recommended, the second paragraph of the methods section has been revised to include only various multi-disciplinary researchers with expertise in healthcare transition.

3. The aims and objectives of the scoping review have been revised completely in version two to improve the manageability of the scoping review. The authors recognise that this section was initially very broad and have revised it as recommended.

4. The authors have decided to only include primary, peer-reviewed research studies so that they can understand how such programmes or interventions were developed or experienced by the end-users, i.e., what specific methodology or methods were used or studies that refer to experiences of named and described interventions. This will help to inform the next phase of the primary researchers overall study. Nonetheless, descriptive studies that provide information on existing programmes or interventions will be included and acknowledged in the scoping review's discussion section.

The scoping review aims to understand, map, and synthesise what interventions are available to support the healthcare transition. However, the scoping review will also map the qualitative studies, which refer to experiences, barriers, and facilitators of named interventions.

5. The aim that was initially proposed surrounding clarifying the definition of transitional care has been removed. The authors recognise that this may be beyond the scope of the review and that it may be more appropriate to undertake a concept analysis to truly understand the concept.

6. The authors initially utilised the phrase “evidence base” in the review question, as they wanted to ensure that the posed review question appropriately addressed all aims of the review. For example, to ensure that the scoping review question encompassed not only identifying the available interventions but also the studies that refer to experiences of such interventions. Therefore, the authors aim to synthesise all the evidence on the interventions to support the healthcare transition within the context of nephrology services. Nonetheless, the authors have taken your feedback, clarified the research question, and removed the phrase “evidence base”.

7. The authors recognise the importance of mapping the full extent of literature available for the scoping review. As acknowledged, the primary researcher is bound by time constraints to complete the scoping review promptly as a component of their academic degree. Therefore, the authors have decided to include national grey literature surrounding transitional care, including policies, models of care, etc., within the discussion section of the scoping review to contextualise the interventions that are identified and the experiences of these interventions within the context of the Irish healthcare system where the primary author’s research study into the area will be undertaken.

8. The authors focus specifically on interventions offered within secondary and tertiary healthcare services, as the primary author’s research study will be conducted in this area. Therefore, the results of the scoping review will be utilised to inform the subsequent phases of the research study. Nonetheless, at least one community-based intervention was recognised from the full-text screening process and will be mentioned in the discussion section of the review.

9. Though optional in a scoping review, the authors have decided to undertake quality appraisals on the research studies identified. This has been recognised as a step that will enhance the review by providing the reviews readership with the quality of the studies obtained and will ensure that the results of the studies obtained are reliable and trustworthy, as it is proposed that this scoping review will be presented to and discussed with academics and healthcare professionals, young people, and families with experience of healthcare transition. Furthermore, this scoping review will inform the next phase of the research study.

10. The capitalisation has been removed to ensure consistency in writing. Furthermore, key concepts have been clarified in line with your recommendations.

11. The screening process has been completely revised to improve clarity. Two reviewers will undertake the complete screening process independently (title and abstract & full text screening). The primary author (MK) will conduct the preliminary data extraction independently due to resource and time constraints to complete the scoping review as part of an academic degree. Nonetheless, this process will be closely supervised and audited by the fourth author (SS), who will supervise, clarify, and agree on the data charting table before sharing the table with all other authors, refining the table based upon their feedback and reaching a consensus on the data that has been charted.

12. The pilot testing of the literature refers to a pilot testing of the screening process, with the inclusion and exclusion criteria inputted to ensure consistency between reviewers undertaking the screening process. If required, relevant amendments or modifications to the criteria can be made at this stage

13. A specific list of the data extracted during the data charting process has been included. Minor amendments have been made to the data charting form as the review process has progressed.
The authors have included a separate category for experiences in the data chart because some literature that will be included may solely focus on the experiences of an intervention, whereas other papers may describe the intervention and how it was designed but not refer to the experiences of the intervention.
Competing Interests: The authors do not disclose any competing or conflicts of interest. Close
Report a concern
Respond or Comment

COMMENTS ON THIS REPORT

Author Response 03 Aug 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

03 Aug 2023

Author Response

The authors sincerely thank you for taking the time to provide valuable and insightful feedback for the proposed scoping review. We have taken all your suggestions and made the relevant ... Continue reading The authors sincerely thank you for taking the time to provide valuable and insightful feedback for the proposed scoping review. We have taken all your suggestions and made the relevant amendments to the scoping review protocol. We are in agreement that your suggestions and feedback have enriched and strengthened the scoping review and express our appreciation. Below, we have provided a response to each piece of constructive feedback in order:

1. The authors have revised the background section to ensure grammatical errors are corrected and that the appropriate terminology is utilised and is consistent throughout.

2. As recommended, the second paragraph of the methods section has been revised to include only various multi-disciplinary researchers with expertise in healthcare transition.

3. The aims and objectives of the scoping review have been revised completely in version two to improve the manageability of the scoping review. The authors recognise that this section was initially very broad and have revised it as recommended.

4. The authors have decided to only include primary, peer-reviewed research studies so that they can understand how such programmes or interventions were developed or experienced by the end-users, i.e., what specific methodology or methods were used or studies that refer to experiences of named and described interventions. This will help to inform the next phase of the primary researchers overall study. Nonetheless, descriptive studies that provide information on existing programmes or interventions will be included and acknowledged in the scoping review's discussion section.

The scoping review aims to understand, map, and synthesise what interventions are available to support the healthcare transition. However, the scoping review will also map the qualitative studies, which refer to experiences, barriers, and facilitators of named interventions.

5. The aim that was initially proposed surrounding clarifying the definition of transitional care has been removed. The authors recognise that this may be beyond the scope of the review and that it may be more appropriate to undertake a concept analysis to truly understand the concept.

6. The authors initially utilised the phrase “evidence base” in the review question, as they wanted to ensure that the posed review question appropriately addressed all aims of the review. For example, to ensure that the scoping review question encompassed not only identifying the available interventions but also the studies that refer to experiences of such interventions. Therefore, the authors aim to synthesise all the evidence on the interventions to support the healthcare transition within the context of nephrology services. Nonetheless, the authors have taken your feedback, clarified the research question, and removed the phrase “evidence base”.

7. The authors recognise the importance of mapping the full extent of literature available for the scoping review. As acknowledged, the primary researcher is bound by time constraints to complete the scoping review promptly as a component of their academic degree. Therefore, the authors have decided to include national grey literature surrounding transitional care, including policies, models of care, etc., within the discussion section of the scoping review to contextualise the interventions that are identified and the experiences of these interventions within the context of the Irish healthcare system where the primary author’s research study into the area will be undertaken.

8. The authors focus specifically on interventions offered within secondary and tertiary healthcare services, as the primary author’s research study will be conducted in this area. Therefore, the results of the scoping review will be utilised to inform the subsequent phases of the research study. Nonetheless, at least one community-based intervention was recognised from the full-text screening process and will be mentioned in the discussion section of the review.

9. Though optional in a scoping review, the authors have decided to undertake quality appraisals on the research studies identified. This has been recognised as a step that will enhance the review by providing the reviews readership with the quality of the studies obtained and will ensure that the results of the studies obtained are reliable and trustworthy, as it is proposed that this scoping review will be presented to and discussed with academics and healthcare professionals, young people, and families with experience of healthcare transition. Furthermore, this scoping review will inform the next phase of the research study.

10. The capitalisation has been removed to ensure consistency in writing. Furthermore, key concepts have been clarified in line with your recommendations.

11. The screening process has been completely revised to improve clarity. Two reviewers will undertake the complete screening process independently (title and abstract & full text screening). The primary author (MK) will conduct the preliminary data extraction independently due to resource and time constraints to complete the scoping review as part of an academic degree. Nonetheless, this process will be closely supervised and audited by the fourth author (SS), who will supervise, clarify, and agree on the data charting table before sharing the table with all other authors, refining the table based upon their feedback and reaching a consensus on the data that has been charted.

12. The pilot testing of the literature refers to a pilot testing of the screening process, with the inclusion and exclusion criteria inputted to ensure consistency between reviewers undertaking the screening process. If required, relevant amendments or modifications to the criteria can be made at this stage

13. A specific list of the data extracted during the data charting process has been included. Minor amendments have been made to the data charting form as the review process has progressed.
The authors have included a separate category for experiences in the data chart because some literature that will be included may solely focus on the experiences of an intervention, whereas other papers may describe the intervention and how it was designed but not refer to the experiences of the intervention.
The authors sincerely thank you for taking the time to provide valuable and insightful feedback for the proposed scoping review. We have taken all your suggestions and made the relevant amendments to the scoping review protocol. We are in agreement that your suggestions and feedback have enriched and strengthened the scoping review and express our appreciation. Below, we have provided a response to each piece of constructive feedback in order:

1. The authors have revised the background section to ensure grammatical errors are corrected and that the appropriate terminology is utilised and is consistent throughout.

2. As recommended, the second paragraph of the methods section has been revised to include only various multi-disciplinary researchers with expertise in healthcare transition.

3. The aims and objectives of the scoping review have been revised completely in version two to improve the manageability of the scoping review. The authors recognise that this section was initially very broad and have revised it as recommended.

4. The authors have decided to only include primary, peer-reviewed research studies so that they can understand how such programmes or interventions were developed or experienced by the end-users, i.e., what specific methodology or methods were used or studies that refer to experiences of named and described interventions. This will help to inform the next phase of the primary researchers overall study. Nonetheless, descriptive studies that provide information on existing programmes or interventions will be included and acknowledged in the scoping review's discussion section.

The scoping review aims to understand, map, and synthesise what interventions are available to support the healthcare transition. However, the scoping review will also map the qualitative studies, which refer to experiences, barriers, and facilitators of named interventions.

5. The aim that was initially proposed surrounding clarifying the definition of transitional care has been removed. The authors recognise that this may be beyond the scope of the review and that it may be more appropriate to undertake a concept analysis to truly understand the concept.

6. The authors initially utilised the phrase “evidence base” in the review question, as they wanted to ensure that the posed review question appropriately addressed all aims of the review. For example, to ensure that the scoping review question encompassed not only identifying the available interventions but also the studies that refer to experiences of such interventions. Therefore, the authors aim to synthesise all the evidence on the interventions to support the healthcare transition within the context of nephrology services. Nonetheless, the authors have taken your feedback, clarified the research question, and removed the phrase “evidence base”.

7. The authors recognise the importance of mapping the full extent of literature available for the scoping review. As acknowledged, the primary researcher is bound by time constraints to complete the scoping review promptly as a component of their academic degree. Therefore, the authors have decided to include national grey literature surrounding transitional care, including policies, models of care, etc., within the discussion section of the scoping review to contextualise the interventions that are identified and the experiences of these interventions within the context of the Irish healthcare system where the primary author’s research study into the area will be undertaken.

8. The authors focus specifically on interventions offered within secondary and tertiary healthcare services, as the primary author’s research study will be conducted in this area. Therefore, the results of the scoping review will be utilised to inform the subsequent phases of the research study. Nonetheless, at least one community-based intervention was recognised from the full-text screening process and will be mentioned in the discussion section of the review.

9. Though optional in a scoping review, the authors have decided to undertake quality appraisals on the research studies identified. This has been recognised as a step that will enhance the review by providing the reviews readership with the quality of the studies obtained and will ensure that the results of the studies obtained are reliable and trustworthy, as it is proposed that this scoping review will be presented to and discussed with academics and healthcare professionals, young people, and families with experience of healthcare transition. Furthermore, this scoping review will inform the next phase of the research study.

10. The capitalisation has been removed to ensure consistency in writing. Furthermore, key concepts have been clarified in line with your recommendations.

11. The screening process has been completely revised to improve clarity. Two reviewers will undertake the complete screening process independently (title and abstract & full text screening). The primary author (MK) will conduct the preliminary data extraction independently due to resource and time constraints to complete the scoping review as part of an academic degree. Nonetheless, this process will be closely supervised and audited by the fourth author (SS), who will supervise, clarify, and agree on the data charting table before sharing the table with all other authors, refining the table based upon their feedback and reaching a consensus on the data that has been charted.

12. The pilot testing of the literature refers to a pilot testing of the screening process, with the inclusion and exclusion criteria inputted to ensure consistency between reviewers undertaking the screening process. If required, relevant amendments or modifications to the criteria can be made at this stage

13. A specific list of the data extracted during the data charting process has been included. Minor amendments have been made to the data charting form as the review process has progressed.
The authors have included a separate category for experiences in the data chart because some literature that will be included may solely focus on the experiences of an intervention, whereas other papers may describe the intervention and how it was designed but not refer to the experiences of the intervention.
Competing Interests: The authors do not disclose any competing or conflicts of interest. Close
Report a concern

Views

Reviewer Report 22 Feb 2023

Kim Mooney-Doyle, School of Nursing, University of Maryland, Baltimore, MD, USA

Approved

https://doi.org/10.21956/hrbopenres.14965.r33428

The goal of this scoping review is to map the evidence for intervention to support AYA with kidney disease from pediatric to adult transition. The authors will use Arskey and O'Malley's approach, which is is a strength, and will seek input from important stakeholders for step 6. Will AYA or their family caregivers provide feedback?

The introduction was comprehensive. It would help to move the purpose up earlier to guide the reader. Also, there is a notable absence of parent/family caregivers perspectives and acknowledgement of the support they provide across domains for the AYA transition. Are the authors planning to evaluate only AYA-focused interventions or those that incorporate family, as well? This is noted in the inclusion/exclusion criteria, but it would help to make some mention of it in the introduction.

The databases noted in the quality appraisal section do not match those noted in the search strategy. Even though the preliminary search is the only one noted in the search strategy, this section should reflect the breadth of what is planned. Both sections should match.

For stage 5, will the authors also collate the demographic data of the studies to account for which areas are represented or not and for which voices are overly-represented or missing? I was not clear if this was to be part of the basic descriptive analysis.

This is a thoughtful and comprehensive protocol. As noted earlier, there are a few sections that need clarification. I wish the authors well.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: family, pediatric palliative care, pediatric oncology

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

CITE

Report a concern

Author Response 03 Aug 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

03 Aug 2023

Author Response

The authors would like to thank you for your time providing feedback on our scoping review protocol. We value your feedback and suggestions for improvement and have made all relevant ... Continue reading The authors would like to thank you for your time providing feedback on our scoping review protocol. We value your feedback and suggestions for improvement and have made all relevant changes as required in the updated version two. We concur that your feedback has greatly enhanced the quality of the scoping review and express our gratitude. We have included all responses to your constructive feedback below, in order:

1. Step six of this scoping review will seek stakeholder input through an expert reference panel comprising multi-disciplinary healthcare professionals in nephrological transitional care and academia. Furthermore, the authors recognise the importance of involving families and young people experiencing the phenomenon in providing feedback. Therefore, the scoping review results will be presented to PPI groups, comprising AYAs and parents/caregivers, and their feedback will be sought on the interventions sourced.

2. The introduction has been restructured, with the purpose of the scoping review made explicit earlier. Amendments have been made to the background section, with some content restructured or removed. This decision has been made for the following reasons: 1. To enhance the readability of the review and to ensure that the purpose of the review is not lost, and 2. Congruent with your feedback surrounding the absence of families within this protocol, the authors have provided a space for a dedicated paragraph acknowledging their support during this process.

3. Though the authors are searching primarily for interventions available to support the healthcare transition for AYAs, the authors agree that healthcare transition does not solely involve or impact upon the young person, but must also support families. Therefore, the authors anticipate that the interventions sourced will also acknowledge and incorporate families. Hence, any intervention that refers to families or familial support or the work that healthcare professionals must do to support the AYAs will be included.

4. The preliminary search has been revised and repeated using the same databases noted in the search strategy. Both sections now match.

5. The authors plan on collating the demographic data as described to provide information surrounding areas that are well or under-represented within the literature as part of the descriptive content analysis, using frequency accounts and a narrative account. The "PAGER framework", developed by Bradbury-Jones et al. 2022, has now been included to summarise the results systematically based on patterns, advancements, gaps, evidence for practice, and research recommendations. Areas that are poorly represented could be identified as a gap in the literature and may also provide direction for research recommendations in under-represented areas.

Reference:
Caroline Bradbury-Jones, Helen Aveyard, Oliver Rudolf Herber, Louise Isham, Julie Taylor & Lisa O’Malley (2022) Scoping reviews: the PAGER framework for improving the quality of reporting, International Journal of Social Research Methodology, 25:4, 457-470, DOI: 10.1080/13645579.2021.1899596
The authors would like to thank you for your time providing feedback on our scoping review protocol. We value your feedback and suggestions for improvement and have made all relevant changes as required in the updated version two. We concur that your feedback has greatly enhanced the quality of the scoping review and express our gratitude. We have included all responses to your constructive feedback below, in order:

1. Step six of this scoping review will seek stakeholder input through an expert reference panel comprising multi-disciplinary healthcare professionals in nephrological transitional care and academia. Furthermore, the authors recognise the importance of involving families and young people experiencing the phenomenon in providing feedback. Therefore, the scoping review results will be presented to PPI groups, comprising AYAs and parents/caregivers, and their feedback will be sought on the interventions sourced.

2. The introduction has been restructured, with the purpose of the scoping review made explicit earlier. Amendments have been made to the background section, with some content restructured or removed. This decision has been made for the following reasons: 1. To enhance the readability of the review and to ensure that the purpose of the review is not lost, and 2. Congruent with your feedback surrounding the absence of families within this protocol, the authors have provided a space for a dedicated paragraph acknowledging their support during this process.

3. Though the authors are searching primarily for interventions available to support the healthcare transition for AYAs, the authors agree that healthcare transition does not solely involve or impact upon the young person, but must also support families. Therefore, the authors anticipate that the interventions sourced will also acknowledge and incorporate families. Hence, any intervention that refers to families or familial support or the work that healthcare professionals must do to support the AYAs will be included.

4. The preliminary search has been revised and repeated using the same databases noted in the search strategy. Both sections now match.

5. The authors plan on collating the demographic data as described to provide information surrounding areas that are well or under-represented within the literature as part of the descriptive content analysis, using frequency accounts and a narrative account. The "PAGER framework", developed by Bradbury-Jones et al. 2022, has now been included to summarise the results systematically based on patterns, advancements, gaps, evidence for practice, and research recommendations. Areas that are poorly represented could be identified as a gap in the literature and may also provide direction for research recommendations in under-represented areas.

Reference:
Caroline Bradbury-Jones, Helen Aveyard, Oliver Rudolf Herber, Louise Isham, Julie Taylor & Lisa O’Malley (2022) Scoping reviews: the PAGER framework for improving the quality of reporting, International Journal of Social Research Methodology, 25:4, 457-470, DOI: 10.1080/13645579.2021.1899596
Competing Interests: The authors do not declare any competing or conflicts of interest. Close
Report a concern
Respond or Comment

COMMENTS ON THIS REPORT

Author Response 03 Aug 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

03 Aug 2023

Author Response

The authors would like to thank you for your time providing feedback on our scoping review protocol. We value your feedback and suggestions for improvement and have made all relevant ... Continue reading The authors would like to thank you for your time providing feedback on our scoping review protocol. We value your feedback and suggestions for improvement and have made all relevant changes as required in the updated version two. We concur that your feedback has greatly enhanced the quality of the scoping review and express our gratitude. We have included all responses to your constructive feedback below, in order:

1. Step six of this scoping review will seek stakeholder input through an expert reference panel comprising multi-disciplinary healthcare professionals in nephrological transitional care and academia. Furthermore, the authors recognise the importance of involving families and young people experiencing the phenomenon in providing feedback. Therefore, the scoping review results will be presented to PPI groups, comprising AYAs and parents/caregivers, and their feedback will be sought on the interventions sourced.

2. The introduction has been restructured, with the purpose of the scoping review made explicit earlier. Amendments have been made to the background section, with some content restructured or removed. This decision has been made for the following reasons: 1. To enhance the readability of the review and to ensure that the purpose of the review is not lost, and 2. Congruent with your feedback surrounding the absence of families within this protocol, the authors have provided a space for a dedicated paragraph acknowledging their support during this process.

3. Though the authors are searching primarily for interventions available to support the healthcare transition for AYAs, the authors agree that healthcare transition does not solely involve or impact upon the young person, but must also support families. Therefore, the authors anticipate that the interventions sourced will also acknowledge and incorporate families. Hence, any intervention that refers to families or familial support or the work that healthcare professionals must do to support the AYAs will be included.

4. The preliminary search has been revised and repeated using the same databases noted in the search strategy. Both sections now match.

5. The authors plan on collating the demographic data as described to provide information surrounding areas that are well or under-represented within the literature as part of the descriptive content analysis, using frequency accounts and a narrative account. The "PAGER framework", developed by Bradbury-Jones et al. 2022, has now been included to summarise the results systematically based on patterns, advancements, gaps, evidence for practice, and research recommendations. Areas that are poorly represented could be identified as a gap in the literature and may also provide direction for research recommendations in under-represented areas.

Reference:
Caroline Bradbury-Jones, Helen Aveyard, Oliver Rudolf Herber, Louise Isham, Julie Taylor & Lisa O’Malley (2022) Scoping reviews: the PAGER framework for improving the quality of reporting, International Journal of Social Research Methodology, 25:4, 457-470, DOI: 10.1080/13645579.2021.1899596
The authors would like to thank you for your time providing feedback on our scoping review protocol. We value your feedback and suggestions for improvement and have made all relevant changes as required in the updated version two. We concur that your feedback has greatly enhanced the quality of the scoping review and express our gratitude. We have included all responses to your constructive feedback below, in order:

1. Step six of this scoping review will seek stakeholder input through an expert reference panel comprising multi-disciplinary healthcare professionals in nephrological transitional care and academia. Furthermore, the authors recognise the importance of involving families and young people experiencing the phenomenon in providing feedback. Therefore, the scoping review results will be presented to PPI groups, comprising AYAs and parents/caregivers, and their feedback will be sought on the interventions sourced.

2. The introduction has been restructured, with the purpose of the scoping review made explicit earlier. Amendments have been made to the background section, with some content restructured or removed. This decision has been made for the following reasons: 1. To enhance the readability of the review and to ensure that the purpose of the review is not lost, and 2. Congruent with your feedback surrounding the absence of families within this protocol, the authors have provided a space for a dedicated paragraph acknowledging their support during this process.

3. Though the authors are searching primarily for interventions available to support the healthcare transition for AYAs, the authors agree that healthcare transition does not solely involve or impact upon the young person, but must also support families. Therefore, the authors anticipate that the interventions sourced will also acknowledge and incorporate families. Hence, any intervention that refers to families or familial support or the work that healthcare professionals must do to support the AYAs will be included.

4. The preliminary search has been revised and repeated using the same databases noted in the search strategy. Both sections now match.

5. The authors plan on collating the demographic data as described to provide information surrounding areas that are well or under-represented within the literature as part of the descriptive content analysis, using frequency accounts and a narrative account. The "PAGER framework", developed by Bradbury-Jones et al. 2022, has now been included to summarise the results systematically based on patterns, advancements, gaps, evidence for practice, and research recommendations. Areas that are poorly represented could be identified as a gap in the literature and may also provide direction for research recommendations in under-represented areas.

Reference:
Caroline Bradbury-Jones, Helen Aveyard, Oliver Rudolf Herber, Louise Isham, Julie Taylor & Lisa O’Malley (2022) Scoping reviews: the PAGER framework for improving the quality of reporting, International Journal of Social Research Methodology, 25:4, 457-470, DOI: 10.1080/13645579.2021.1899596
Competing Interests: The authors do not declare any competing or conflicts of interest. Close
Report a concern

Comments on this article Comments (0)

Version 3

VERSION 3 PUBLISHED 02 Feb 2023

Open Peer Review

Reviewer Status

Reviewer Reports

	Invited Reviewers
	1	2
Version 3 (revision) 30 Oct 23		read
Version 2 (revision) 27 Jul 23		read
Version 1 02 Feb 23	read	read

Kim Mooney-Doyle, University of Maryland, Baltimore, USA
Alison Luke, University of New Brunswick Saint John, Saint John, Canada

Comments on this article

All Comments(0)

Add a comment

Back to all reports

Reviewer Report

36 Views

01 Nov 2023 | for Version 3

36 Views Cite this report Responses(0)

Approved

I have no further comments! I approve.

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

I do research in health service delivery with a focus on models of care that support improved care integration. I have done research in the area of transition from paediatric to adult care for children and youth with complex care needs.

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

Respond to this report

Responses (0)

Back to all reports

Reviewer Report

52 Views

18 Aug 2023 | for Version 2

52 Views Cite this report Responses(1)

Approved

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

Respond to this report

Responses (1)

Back to all reports

Reviewer Report

54 Views

27 Jun 2023 | for Version 1

54 Views Cite this report Responses(1)

Approved With Reservations

Thank you for the opportunity to review this scoping review protocol. I think the review will be an important addition to the transition literature.

Please find below some feedback and edits.

In the introduction, the second sentence “...and the improved management…” I would remove the “the” and maybe add “…and improved disease management.”
Also remove “the” and “of patients” in this sentence “…and improved life expectancy.”
In the sentence “Hence, more patients are required to undergo the this healthcare transition.” Please remove the “the”.
In the methods section in the second paragraph, “Experts in…” I am unclear why the author is including the specific disciplines listed. Maybe you could say that you will, include “researchers from various academic disciplines who have conducted research in this area.”
Under Aims and Objectives, I felt like this section was very broad. I am also unfamiliar with presenting a protocol this way (I typically follow the JBI template).

The research question asks “What is the evidence base…” I am unclear what you mean by evidence base for this context?
Why is grey literature being excluded? I think later on you say that it will be due to time constraints. Given scoping reviews are meant to cast a wide net, I think it is important to include grey literature if possible.
Under the context section, I am unclear if programs or interventions offered in community would be included? If not why? Again, if you are interested in capturing programs that support this transition, I would think you want to be broad so you do not miss any?
I am unclear why the authors will be doing quality appraisals. This is not typically done with scoping reviews.
Under study selection section, in the paragraph that starts with “Search results from EndNote...” The authors provide a list for data extraction. I am wondering why each step is capitalized?
The screening process needs to be better clarified. The authors note that 2 reviewers will be used for initial title and abstract screening, but it also needs to be clear that there needs to be 2 screeners for the full text screening as well as the data extraction process.
In the paragraph that begins with “A pilot testing of literature obtained...” I am unclear what is being referred to here. Please clarify.
In the paragraph on data charting, please include a specific list of what data will be extracted (I see this in the table, but I think needs to be here as well). In the table for data extraction, I would not have a separate category for experiences as this would be included in findings.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Respond to this report

Responses (1)

Author Response

03 Aug 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

The authors sincerely thank you for taking the time to provide valuable and insightful feedback for the proposed scoping review. We have taken all your suggestions and made the relevant amendments to the scoping review protocol. We are in agreement that your suggestions and feedback have enriched and strengthened the scoping review and express our appreciation. Below, we have provided a response to each piece of constructive feedback in order:

1. The authors have revised the background section to ensure grammatical errors are corrected and that the appropriate terminology is utilised and is consistent throughout.

2. As recommended, the second paragraph of the methods section has been revised to include only various multi-disciplinary researchers with expertise in healthcare transition.

3. The aims and objectives of the scoping review have been revised completely in version two to improve the manageability of the scoping review. The authors recognise that this section was initially very broad and have revised it as recommended.

4. The authors have decided to only include primary, peer-reviewed research studies so that they can understand how such programmes or interventions were developed or experienced by the end-users, i.e., what specific methodology or methods were used or studies that refer to experiences of named and described interventions. This will help to inform the next phase of the primary researchers overall study. Nonetheless, descriptive studies that provide information on existing programmes or interventions will be included and acknowledged in the scoping review's discussion section.

The scoping review aims to understand, map, and synthesise what interventions are available to support the healthcare transition. However, the scoping review will also map the qualitative studies, which refer to experiences, barriers, and facilitators of named interventions.

5. The aim that was initially proposed surrounding clarifying the definition of transitional care has been removed. The authors recognise that this may be beyond the scope of the review and that it may be more appropriate to undertake a concept analysis to truly understand the concept.

6. The authors initially utilised the phrase “evidence base” in the review question, as they wanted to ensure that the posed review question appropriately addressed all aims of the review. For example, to ensure that the scoping review question encompassed not only identifying the available interventions but also the studies that refer to experiences of such interventions. Therefore, the authors aim to synthesise all the evidence on the interventions to support the healthcare transition within the context of nephrology services. Nonetheless, the authors have taken your feedback, clarified the research question, and removed the phrase “evidence base”.

7. The authors recognise the importance of mapping the full extent of literature available for the scoping review. As acknowledged, the primary researcher is bound by time constraints to complete the scoping review promptly as a component of their academic degree. Therefore, the authors have decided to include national grey literature surrounding transitional care, including policies, models of care, etc., within the discussion section of the scoping review to contextualise the interventions that are identified and the experiences of these interventions within the context of the Irish healthcare system where the primary author’s research study into the area will be undertaken.

8. The authors focus specifically on interventions offered within secondary and tertiary healthcare services, as the primary author’s research study will be conducted in this area. Therefore, the results of the scoping review will be utilised to inform the subsequent phases of the research study. Nonetheless, at least one community-based intervention was recognised from the full-text screening process and will be mentioned in the discussion section of the review.

9. Though optional in a scoping review, the authors have decided to undertake quality appraisals on the research studies identified. This has been recognised as a step that will enhance the review by providing the reviews readership with the quality of the studies obtained and will ensure that the results of the studies obtained are reliable and trustworthy, as it is proposed that this scoping review will be presented to and discussed with academics and healthcare professionals, young people, and families with experience of healthcare transition. Furthermore, this scoping review will inform the next phase of the research study.

10. The capitalisation has been removed to ensure consistency in writing. Furthermore, key concepts have been clarified in line with your recommendations.

11. The screening process has been completely revised to improve clarity. Two reviewers will undertake the complete screening process independently (title and abstract & full text screening). The primary author (MK) will conduct the preliminary data extraction independently due to resource and time constraints to complete the scoping review as part of an academic degree. Nonetheless, this process will be closely supervised and audited by the fourth author (SS), who will supervise, clarify, and agree on the data charting table before sharing the table with all other authors, refining the table based upon their feedback and reaching a consensus on the data that has been charted.

12. The pilot testing of the literature refers to a pilot testing of the screening process, with the inclusion and exclusion criteria inputted to ensure consistency between reviewers undertaking the screening process. If required, relevant amendments or modifications to the criteria can be made at this stage

13. A specific list of the data extracted during the data charting process has been included. Minor amendments have been made to the data charting form as the review process has progressed.
The authors have included a separate category for experiences in the data chart because some literature that will be included may solely focus on the experiences of an intervention, whereas other papers may describe the intervention and how it was designed but not refer to the experiences of the intervention.

View more View less

Competing Interests

The authors do not disclose any competing or conflicts of interest.

Back to all reports

Reviewer Report

72 Views

22 Feb 2023 | for Version 1

Kim Mooney-Doyle, School of Nursing, University of Maryland, Baltimore, MD, USA

72 Views Cite this report Responses(1)

Approved

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

family, pediatric palliative care, pediatric oncology

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

Respond to this report

Responses (1)

Author Response

03 Aug 2023

Melissa Kinch, School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Ireland

The authors would like to thank you for your time providing feedback on our scoping review protocol. We value your feedback and suggestions for improvement and have made all relevant changes as required in the updated version two. We concur that your feedback has greatly enhanced the quality of the scoping review and express our gratitude. We have included all responses to your constructive feedback below, in order:

1. Step six of this scoping review will seek stakeholder input through an expert reference panel comprising multi-disciplinary healthcare professionals in nephrological transitional care and academia. Furthermore, the authors recognise the importance of involving families and young people experiencing the phenomenon in providing feedback. Therefore, the scoping review results will be presented to PPI groups, comprising AYAs and parents/caregivers, and their feedback will be sought on the interventions sourced.

2. The introduction has been restructured, with the purpose of the scoping review made explicit earlier. Amendments have been made to the background section, with some content restructured or removed. This decision has been made for the following reasons: 1. To enhance the readability of the review and to ensure that the purpose of the review is not lost, and 2. Congruent with your feedback surrounding the absence of families within this protocol, the authors have provided a space for a dedicated paragraph acknowledging their support during this process.

3. Though the authors are searching primarily for interventions available to support the healthcare transition for AYAs, the authors agree that healthcare transition does not solely involve or impact upon the young person, but must also support families. Therefore, the authors anticipate that the interventions sourced will also acknowledge and incorporate families. Hence, any intervention that refers to families or familial support or the work that healthcare professionals must do to support the AYAs will be included.

4. The preliminary search has been revised and repeated using the same databases noted in the search strategy. Both sections now match.

5. The authors plan on collating the demographic data as described to provide information surrounding areas that are well or under-represented within the literature as part of the descriptive content analysis, using frequency accounts and a narrative account. The "PAGER framework", developed by Bradbury-Jones et al. 2022, has now been included to summarise the results systematically based on patterns, advancements, gaps, evidence for practice, and research recommendations. Areas that are poorly represented could be identified as a gap in the literature and may also provide direction for research recommendations in under-represented areas.

Reference:
Caroline Bradbury-Jones, Helen Aveyard, Oliver Rudolf Herber, Louise Isham, Julie Taylor & Lisa O’Malley (2022) Scoping reviews: the PAGER framework for improving the quality of reporting, International Journal of Social Research Methodology, 25:4, 457-470, DOI: 10.1080/13645579.2021.1899596

View more View less

Competing Interests

The authors do not declare any competing or conflicts of interest.

Alongside their report, reviewers assign a status to the article:

Approved - the paper is scientifically sound in its current form and only minor, if any, improvements are suggested

Approved with reservations - A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.

Not approved - fundamental flaws in the paper seriously undermine the findings and conclusions

[1] Akchurin OM, Melamed ML, Hashim BL, et al.: Medication adherence in the transition of adolescent kidney transplant recipients to the adult care. Pediatr Transplant. 2014; 18(5): 538–548. PubMed Abstract | Publisher Full Text | Free Full Text

[2] American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine: A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002; 110(6 Pt 2): 1304–1306. PubMed Abstract

[3] Arksey H, O’Malley L: Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005; 8(1): 19–32. Publisher Full Text

[4] Aymé S, Bockenhauer D, Day S, et al.: Common Elements in Rare Kidney Diseases: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int. 2017; 92(4): 796–808. PubMed Abstract | Publisher Full Text | Free Full Text

[5] Barbero GJ: Leaving the Pediatrician for the Internist. Ann Intern Med. 1982; 96: 673–674. Publisher Full Text

[6] Bassanese G, Wlodkowski T, Servais A, et al.: The European Rare Kidney Disease Registry (ERKReg): objectives, design and initial results. Orphanet J Rare Dis. 2021; 16(1): 251. PubMed Abstract | Publisher Full Text | Free Full Text

[7] Bell L: Adolescent dialysis patient transition to adult care: a cross-sectional survey. Pediatr Nephrol. 2007; 22(5): 720–726. PubMed Abstract | Publisher Full Text

[8] Bell LE: The Transition of a Pediatric Kidney Transplant Recipient from Childhood to Adult Care. Clin J Am Soc Nephrol. 2022; 17(5): 736–738. PubMed Abstract | Publisher Full Text | Free Full Text

[9] Betz CL, Nehring WM, Lobo ML: Transition Needs of Parents of Adolescents and Emerging Adults With Special Health Care Needs and Disabilities. J Fam Nurs. 2015; 21(3): 362–412. PubMed Abstract | Publisher Full Text

[10] Blum RW, Garell D, Hodgman CH, et al.: Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993; 14(7): 570–576. PubMed Abstract | Publisher Full Text

[11] Boland A, Cherry MG, Dickson R: Doing a Systematic Review: A Student’s Guide. 2nd edn. London: SAGE publications, 2017; 2–242. Reference Source

[12] Bradbury-Jones C, Aveyard H, Herber OR, et al.: Scoping reviews: the PAGER framework for improving the quality of reporting. Int J Soc Res Methodol. 2022; 25(4): 457–470. Publisher Full Text

[13] Burls A: What is critical appraisal? Hayward Medical Communications, 2014; (Accessed 19 January 2023). Reference Source

[14] Callinan J, Coyne I: Arts-based interventions to promote transition outcomes for young people with long-term conditions: A review. Chronic Illn. 2020; 16(1): 23–40. PubMed Abstract | Publisher Full Text

[15] Campbell F, Biggs K, Aldiss SK, et al.: Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev. 2016; 16(4): CD009794. PubMed Abstract | Publisher Full Text

[16] Catarino M, Charepe Z, Festas C: Promotion of Self-Management of Chronic Disease in Children and Teenagers: Scoping Review. Healthcare (Basel). 2021; 9(12): 1642. PubMed Abstract | Publisher Full Text | Free Full Text

[17] Çiçek N, Alpay H: The transition of adolescents to adult nephrology care: A survey on young adults’ experience. J Ist Faculty Med. Istanbul University Press, 2022; 85(1): 86–90. Publisher Full Text

[18] Covidence: Covidence. 2022; (Accessed 18 January 2023). Reference Source

[19] Crawford K, Wilson C, Low JK, et al.: Transitioning adolescents to adult nephrology care: a systematic review of the experiences of adolescents, parents, and health professionals. Pediatr Nephrol. 2020; 35(4): 555–567. PubMed Abstract | Publisher Full Text

[20] Critical Appraisal Skills Programme (CASP): Critical Appraisal Skills Programme. 2022; (Accessed 18 January 2023). Reference Source

[21] Dallimore DJ, Neukirchinger B, Noyes J: Why is transition between child and adult services a dangerous time for young people with chronic kidney disease? A mixed-method systematic review. PLoS One. 2018; 13(8): e0201098. PubMed Abstract | Publisher Full Text | Free Full Text

[22] Devuyst O, Knoers NV, Remuzzi G, et al.: Rare inherited kidney diseases: challenges, opportunities, and perspectives. Lancet. 2014; 383(9931): 1844–1859. PubMed Abstract | Publisher Full Text | Free Full Text

[23] Dobbels F, Ruppar T, De Geest S, et al.: Adherence to the immunosuppressive regimen in pediatric kidney transplant recipients: A systematic review. Pediatr Transplant. 2010; 14(5): 603–613. PubMed Abstract | Publisher Full Text

[24] Dobbels F, Vanhaecke J, Dupont L, et al.: Pretransplant predictors of posttransplant adherence and clinical outcome: an evidence base for pretransplant psychosocial screening. Transplantation. 2009; 87(10): 1497–1504. PubMed Abstract | Publisher Full Text

[25] Ferris ME, Gipson DS, Kimmel PL, et al.: Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol. 2006; 21(7): 1020–1026. PubMed Abstract | Publisher Full Text

[26] Foster BJ: Heightened graft failure risk during emerging adulthood and transition to adult care. Pediatr Nephrol. 2015; 30(4): 567–576. PubMed Abstract | Publisher Full Text

[27] Foster BJ, Bell L: Improving the Transition to Adult Care for Young People with Chronic Kidney Disease. Curr Pediatr Rep. 2015; 3: 62–70. Publisher Full Text

[28] Gabriel P, McManus M, Rogers K, et al.: Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review. J Pediatr. 2017; 188: 263–269.e15. PubMed Abstract | Publisher Full Text

[29] Gough D, Oliver S, Thomas J: Introduction to Systematic Reviews. 2nd edn. Los Angeles: SAGE publications, 2017; 1–294. Reference Source

[30] Hong QN, Fàbregues S, Bartlett G, et al.: The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Educ Inform. 2018; 34(4): 285–291. Publisher Full Text

[31] Joanna Briggs Institute (JBI): Resources. 2022; (Accessed 8 November 2022). Reference Source

[32] Joly D, Béroud C, Grünfield JP: Rare inherited disorders with renal involvement-approach to the patient. Kidney Int. 2015; 87(5): 901–908. PubMed Abstract | Publisher Full Text

[33] Kralik D, van Loon A: Transitional Processes and Chronic Illness. In: Kralik D, Paterson B, Coates V (ed.): Translating Chronic Illness Research into Practice. West Sussex: Wiley-Blackwell. Blackwell Publishing Limited, 2010; 1–204.

[34] Kreuzer M, Drube J, Prüfe J, et al.: Current Management of transition of young people affected by rare renal conditions in the ERKNet. Eur J Hum Genet. 2019; 27(12): 1783–1790. PubMed Abstract | Publisher Full Text | Free Full Text

[35] Levac D, Colquhoun H, O’Brien KK: Scoping studies: advancing the methodology. Implement Sci. 2010; 5: 69. PubMed Abstract | Publisher Full Text | Free Full Text

[36] Levay P, Craven J: Systematic searching: practical ideas for improving results. London: Facet Publishing, 2019; 217–218. Reference Source

[37] Lewis MA, Shaw J, Sinha M, et al.: UK Renal Registry 11^th Annual Report (December 2008): Chapter 13 Demography of the UK paediatric Renal Replacement Therapy population. Nephron Clin Pract. 2009; 111(1): 257–267. Publisher Full Text

[38] Ma J, Qinglin Y, Wenwen D, et al.: Psychometric properties of the 'Self-Management and Transition to Adulthood with R_x = Treatment Questionnaire’ in Chinese Children and young people with chronic diseases. Int J Nurs Pract. 2021; 27(2): e12880. PubMed Abstract | Publisher Full Text

[39] Marks SD: Transition of Adolescents with Nephrological Conditions. Primer on Nephrology. 2022; 1175–1180. Publisher Full Text

[40] Matsuda-Abedini M, Marks SD, Foster BJ: Transition of young adult kidney transplant recipients. Pediatr Nephrol. 2023; 38(2): 383–390. PubMed Abstract | Publisher Full Text

[41] Mazzucato M, Pozza LVD, Minichiello C, et al.: The Epidemiology of Transition into Adulthood of Rare Diseases Patients: Results from a Population-Based Registry. Int J Environ Res Public Health. 2018; 15(10): 2212. PubMed Abstract | Publisher Full Text | Free Full Text

[42] Miller C: Using technology to bridge the transition from pediatric to adult health care. J Am Assoc Nurse Pract. 2022; 34(6): 850–858. PubMed Abstract | Publisher Full Text

[43] Page MJ, McKenzie JE, Bossuyt PM, et al.: The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021; 372: n71. PubMed Abstract | Publisher Full Text | Free Full Text

[44] Paone MC, Wigle M, Saewyc E: The ON TRAC model for transitional care of adolescents. Prog Transplant. 2006; 16(4): 291–302. PubMed Abstract | Publisher Full Text

[45] Peters MDJ, Godfrey CM, Khalil H, et al.: Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015; 13(3): 141–146. PubMed Abstract | Publisher Full Text

[46] Peters MDJ, Marnie C, Tricco AC, et al.: Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth. 2020; 18(10): 2119–2126. PubMed Abstract | Publisher Full Text

[47] Piccoli G, Crochette R, Versino E, et al.: Transition care from childhood to adulthood in chronic kidney disease, dialysis and kidney transplantation. National Institute for Health Research: Prospero. 2020; (Accessed 5 January 2023). Reference Source

[48] PROSPERO: Prospero. 2022; (Accessed 24 January 2023). Reference Source

[49] Prüfe J, Dierks ML, Bethe D, et al.: Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study. BMJ Open. 2017; 7(6): e015593. PubMed Abstract | Publisher Full Text | Free Full Text

[50] Prüfe J, Pape L, Kreuzer M: Barriers to the Successful Health Care Transition of Patients with Kidney Disease: A Mixed-Methods Study on the Perspectives of Adult Nephrologists. Children (Basel). 2022; 9(6): 803. PubMed Abstract | Publisher Full Text | Free Full Text

[51] Quaglia M, Musetti C, Ghiggeri GM, et al.: Unexpectedly high prevalence of rare genetic disorders in kidney transplant recipients with an unknown causal nephropathy. Clin Transplant. 2014; 28(9): 995–1003. PubMed Abstract | Publisher Full Text

[52] Raina R, Wang J, Krishnappa V, et al.: Pediatric Renal Transplantation: Focus on Current Transition Care and Proposal of the "RISE to Transition" Protocol. Ann Transplant. 2018; 23: 45–60. PubMed Abstract | Publisher Full Text | Free Full Text

[53] Riccio E, Zanfardino M, Ferreri L, et al.: Switch from enzyme replacement therapy to oral chaperone migalastat for treating fabry disease: real-life data. Eur J Hum Genet. 2020; 28(12): 1662–1668. PubMed Abstract | Publisher Full Text | Free Full Text

[54] Shaw KL, Baldwin L, Heath G: 'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care. J Child Health Care. 2021; 25(2): 305–319. PubMed Abstract | Publisher Full Text

[55] Stepien KM, Kieć-Wilk B, Lampe C, et al.: Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases: Results From the First Multi-Center European Survey. Front Med (Lausanne). 2021; 8: 652358. PubMed Abstract | Publisher Full Text | Free Full Text

[56] Tareen RS, Tareen K: Psychosocial aspects of diabetes management: dilemma of diabetes distress. Transl Pediatr. 2017; 6(4): 383–396. PubMed Abstract | Publisher Full Text | Free Full Text

[57] Tricco AC, Lillie E, Zarin W, et al.: PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018; 169(7): 467–473. PubMed Abstract | Publisher Full Text

[58] Upchurch M: Gender Bias in Research. In: Companion to Women's and Gender Studies. N.A. Naples (Ed.). 2020. Publisher Full Text

[59] Watson AR: Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol. 2005; 20(2): 113–117. PubMed Abstract | Publisher Full Text

[60] Watson AR, Harden PN, Ferris ME, et al.: Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Kidney Int. 2011; 80(7): 704–707. PubMed Abstract | Publisher Full Text

[61] Wildes DM, Costigan CS, Kinlough M, et al.: Transitional care models in adolescent kidney transplant recipients-a systematic review. Nephrol Dial Transplant. 2023; 38(1): 49–55. PubMed Abstract | Publisher Full Text

[62] Willis ER, McDonagh JE: Transition from children's to adults' services for young people using health or social care services (NICE Guideline NG43). Arch Dis Child Educ Pract Ed. 2018; 103(5): 253–256. PubMed Abstract | Publisher Full Text

[63] Young NL, Rochon TG, McCormick A, et al.: The health and quality of life outcomes among youth and young adults with cerebral palsy. Arch Phys Med Rehabil. 2010; 91(1): 143–148. PubMed Abstract | Publisher Full Text

Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol

Abstract

Keywords

Revised Amendments from Version 1

Introduction

Methods

Aims/objectives

Stage one: Identification of the scoping review research question

Stage two: Identifying relevant studies

Table 1. Inclusion and exclusion criteria.

Table 2. Search strategy.

Stage three: Study selection

Figure 1. PRISMA 2020 Flowchart for Scoping Review (Page et al., 2021).

Stage four: Data charting

Table 3. Sample data charting form.

Stage five: Collating, summarising and reporting results

Stage six: Consultation

Dissemination plans for completed scoping review

Study status

Conclusions

Data availability

Underlying data

Acknowledgements

References

Comments on this article Comments (0)

Open Peer Review

Comments on this article Comments (0)

Open Peer Review

Reviewer Status

Reviewer Reports

Comments on this article

Are you a HRB-funded researcher?

Thank you!

Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol

Abstract

Keywords

Revised Amendments from Version 1

Introduction

Methods

Aims/objectives

Stage one: Identification of the scoping review research question

Stage two: Identifying relevant studies

Table 1. Inclusion and exclusion criteria.

Table 2. Search strategy.

Stage three: Study selection

Figure 1. PRISMA 2020 Flowchart for Scoping Review (Page et al., 2021).

Stage four: Data charting

Table 3. Sample data charting form.

Stage five: Collating, summarising and reporting results

Stage six: Consultation

Dissemination plans for completed scoping review

Study status

Conclusions

Data availability

Underlying data

Acknowledgements

References

Comments on this article Comments (0)

Open Peer Review

Comments on this article Comments (0)

Open Peer Review

Reviewer Status

Reviewer Reports

Comments on this article

Competing Interests Policy

Stay Updated

Are you a HRB-funded researcher?

Thank you!