Using nominal group technique to inform the development of a self-management app for patients with relapsed myeloma

Introduction

Patient participation and engagement in research for the development of health research priorities has increased in importance more recently. The Irish health care system has supported this through the development of patient and public involvement in research. Involving patients is particularly important as their views may often differ from health care professionals and current evidence based practice, and their involvement can provide valuable insights. In addition, patient involvement provides opportunities for increased awareness of research trends, and communicating issues of importance to patients and their families in relation to their needs¹. Moreover, patient and health care professional partnerships in research can improve the patient’s health and can benefit the healthcare system generally.

In the study discussed here, the population were patients with relapsed multiple myeloma (MM). MM accounts for 2% of all cancers and is the 2^nd most common hematological malignancy². MM is a B cell malignancy resulting in uncontrolled production of plasma cells. These plasma cells overproduce immunoglobulins (heavy and light-chain M-proteins) known as a paraprotein, which build up in the bone marrow and often enter adjacent bone. The cause of MM is unknown; however it is known that the production of paraprotein in MM is associated with specific chromosomal abnormalities (deletions or translations). Almost all patients with MM will relapse, with each remission duration reducing as the number of treatment regimens increase³. Patients with relapsed or refractory disease are defined as those who, having achieved minor response or better, relapse and then progress while on salvage therapy or experience progression within 60 days of their last therapy⁴.

Patients with MM are living longer resulting in its treatment as a chronic disease rather than a terminal illness. Chronic diseases are life changing and increasingly patients with MM are living with long term symptoms as a result of treatment toxicities and side effects. Symptoms have been acknowledged as a hindrance to quality of life as well as having significant effects on emotional status, activity and participation in life⁵.

In order for MM to be managed as a chronic condition patients need to be treated holistically, addressing not only their diagnosis but the symptoms and toxicities associated with treatment⁶. MM patients also need to be empowered to take control of their condition enabling them to take control of their health⁷. Evidence suggests that by helping patients to self-manage, the risk of adverse events and hospital admissions are reduced and patients’ quality of life is improved⁸.

Treatment-specific clinically focused assessment tools can be useful for optimising therapy and implementing supportive care strategies (e.g., growth factors, transfusion support, intravenous hydration, bisphosphonates, antiviral therapies) to manage treatment-related symptoms. Patient education opportunities also arise when patients are assessed resulting in a heightened awareness and encouraging prompt reporting of symptoms and side effects. When education is approached efficiently it can significantly reduce the severity of symptoms and improve overall quality of life⁹.

We report here on phase 2 (nominal group technique (NGT)) of a study aimed to develop a symptom management tool for patients with relapsed myeloma.

Methods

Results

In total, 18 health care professionals participated in the modified NGT; 6 Consultants, 2 haematology registrars, 3 specialist nurses [Advanced Nurse Practitioner/Clinical Nurse Specialist] (haematology), 1 staff nurse and 6 “other” health care professionals. Participants ranged in experience of working with myeloma patients from 2 years to greater than 27 years.

Our aim was to include the top 5 priorities for inclusion in the app; therefore the results of the voting cards were reviewed to determine which symptoms received the most votes and the ranking of the votes. Of the 12 symptoms identified by patients in the focus groups, pain was the top symptom voted by the HC professionals as essential for inclusion in a patient app. The symptom voted second was fatigue with peripheral neuropathy, infection risk and steroid induced side effects following as the symptoms that were of highest priority in the management of patients with relapsed or refractory multiple myeloma (Table 2).

Discussion

This modified nominal group process provided useful information from health care professionals for the purposes of gaining consensus on what they perceived to be symptom priority for relapsed myeloma patients. Interestingly, there were similar findings between patients and health care professionals in relation to the most challenging symptoms experienced.

Fatigue and steroid induced side effects were considered two of the symptoms of highest priority for inclusion in the symptom management app. Fatigue is described in the literature as one of the most common distressing symptoms in MM. Associated causes include anaemia, pain, mood disturbance, diminished strength, diminished endurance, decreased sleep efficiency at night and advanced disease. It has also been reported that fatigue has the greatest negative effect on physical functioning in those with a diagnosis of MM. Despite this ongoing symptom burden, treatment remains episodic and self-management programmes have been limited for those on lifelong treatment¹⁵. Patients have already described some self-care strategies used such as resting times, distraction techniques “mind over matter”, exercise and “walking off the fatigue.”¹⁰

Steroid induced side effects are often acknowledged in the development of fatigue as a long term side effect in patients with relapsed myeloma. Despite the significant impact steroids have on neuropsychiatric function and health related quality of life, it remains a useful therapy in the control of MM through improving overall patient response as well as progression free survival. Their mechanism is complex; however they are thought to modify the body’s immune system and produce powerful anti-inflammatory properties. In contrast to their ability to help in the control of MM they are known to cause intense adverse effects including elevated blood sugars, increased risk of infection, mood swings and insomnia, which are often long term and not widely described or documented despite the common use of steroids¹⁶. Phase 1 of our study iterated these adverse events with patients describing hyperactivity, the “let down” effect and excessive diaphoresis as having a significant impact on their health related quality of life¹⁰. Patients were very aware of the associated side effects of steroids and reported the side effects as out of control at times. However it has been noted that patients appreciate the impact steroids can have on their disease response so they often fail to report side effects affecting their health related quality of life¹⁰. As such, it is of paramount importance that health care professionals educate patients and their caregivers on the importance of reporting adverse effects and thus improve patient outcomes. Education and patient involvement could improve the longer term outcomes of relapsed MM patients on steroids¹⁰.

The technique that we used involved a modification of the NGT. Generally there are at least 5–6 steps involved in the process; however we chose a two-step process which included two different groups of participants (patients and health care professionals). Using this technique ensured that individuals did not feel pressure to conform based on perceived status within the group, with all health care professionals voting anonymously. In addition it allowed the stakeholders to prioritise the symptoms through a democratic process¹⁷.

This approach has however a number of limitations. Focus group discussions with health care professionals would have provided a more comprehensive picture of symptom management for relapsed MM patients. Using just the modified NGT was a very blunt approach which provided conclusions without context. Further data would most likely have been generated if we had not modified the NGT process.

Nominal groups often request participants to record ideas independently and in private, then sharing, listing and discussing the ideas, and finally judging or voting on the ideas independently. It is usual for participants to be asked to identify issues before attending the NGT session, however in this case the issues were already identified¹³.

Conclusion

NGT offers opportunity to involve both patients and health care professionals to be involved in healthcare improvement and design. Research prioritisation now needs to focus on both patient and health care professional viewpoints to ensure a comprehensive approach to care. Patients’ healthcare tools, systems and design should be used to ensure patient centred care is at the centre of healthcare reform. In addition, our study highlights that patient with chronic malignancies are willing to get involved. NGT offers potential in gaining an insight to health care professionals’ priorities for patients and addressing the gap that is often described between health care professionals and patient values.

Data availability

All data underlying the results are available as part of the article and no additional source data are required.