Unheard Voices: Unmet Psychosocial Needs of Carers of Myeloma—A Service Evaluation Exploring Patient and Carer Perceived Benefits of Attending a Myeloma Support Group

Myeloma outcomes and prognosis continue to improve, and it is an exciting time for clinicians working in this field. Our understanding of the pathogenesis of myeloma is advancing rapidly from genetics to tumour surveillance [1]. With many novel treatments, patients living with myeloma face a chronic illness carrying a substantial physical and psychosocial burden, with increased risk of anxiety, depression and decreased quality of life [2-8]. This burden may persist even during periods of disease stability, and therefore, as patients live longer, the impact on overall well-being becomes increasingly significant [2, 3]. Less is known, however, about the experiences of carers and loved ones, who may also face significant distress, isolation and unmet informational needs [9, 10]. Benefits of peer support are recognized, and guidelines suggest the cultivation of support groups for myeloma patients [6]; however, their impact on carers is less well described. A local haematology team collaborated with a regional charity, establishing a support group aiming to address some of the needs of myeloma patients and carers. Sessions run every 6 weeks, co-facilitated by a group support officer and clinical nurse specialist, with approximately 30 attendees, including patients and carers. The group aims to improve the quality of life for those impacted by myeloma through peer support and education delivered by invited speakers, covering topics such as fatigue management, finances, emotional well-being and treatment information. Such professionally led groups have been demonstrated as effective in reducing distress and addressing the psychological needs of patients [11]. A service evaluation was conducted exploring patient and carer concerns and evaluating perceived benefits of group participation. The aim of the evaluation was to better understand the priorities of attendees (both carers and patients) to allow sessions specifically focused on their needs and wishes, for example, targeted sessions such as emotional well-being or advanced care planning. Anonymous paper questionnaires were distributed at baseline and after 6 months. Baseline questionnaires were completed by 25 patients and 20 carers, and follow-up completed by 33 patients and 11 carers. Participation was voluntary; consent was implied by completion and return of the survey. No identifiable data were collected. Baseline questionnaires were developed from the Myeloma Patient Outcome Scale [12] (MyPOS), used with permission by registration on their website. Literature suggests approximately 20% of cancer patients are affected by depression and 10% by anxiety [13]. Such levels are reported as even higher in myeloma, with over 25% of patients experiencing either depression or anxiety [9]. Psychological screening in myeloma is therefore advocated for [6]; hence, validated depression and anxiety scales (PHQ-9 [14] and GAD-7 [15]) were substituted into MyPOS questions assessing anxiety and depression. Remaining MyPOS items were used unchanged to provide a validated assessment of myeloma specific physical, social and emotional concerns. Respondents were also asked to rank their top five priorities, options for which developed from a group-led activity. Data were analysed descriptively using Microsoft Excel; no statistical testing was performed due to small, unpaired samples. Most frequently patient reported symptoms at baseline included fatigue (80%), tingling in hands or feet (68%), pain (64%), difficulty remembering things (60%), reduced mobility (52%) and breathlessness (52%). Over half reported difficulty with activities of daily living, hobbies or spending time with family. Most reported patients' worries included disease progression (72%), infection (68%) and death or dying (48%), and approximately one-third expressed a need for information on what may happen in the future and planning future wishes. When asked regarding their overall five top priorities, the top ranked by patients was ‘worry regarding family and loved ones’ (72%). This finding was supported by another study where 40% of myeloma patients reported worry regarding the impact of their disease on others [3], thereby strengthening the rationale for including carers in interventions such as support groups. Carers were asked to rank the top five priorities relevant to themselves. Responses included fatigue (80%), worry regarding family and loved ones (50%), treatment side effects (50%), coping with uncertainty (50%) and emotional well-being (45%). When assessed with PHQ-9 and GAD-7, symptoms consistent with depression were identified in 25% of carers and 48% of patients. Symptoms consistent with anxiety were, in fact, higher among carers (50%) than patients (28%). This is echoed in wider research which recognizes the significant psychological burden on myeloma carers, particularly in relation to anxiety [9, 10, 16]. One study found similar rates of anxiety in carers, with almost half of carers experiencing anxiety compared to just over a quarter of patients [9]. Approximately half of the participants in both groups reported that current symptoms of depression or anxiety were impacting on their ability to work, take care of things at home or get on with others. Respondents were asked to reflect back prior to diagnosis using PHQ-9 and GAD-7 scales. Although it was recognized that these tools are not validated for this purpose and results subject to recall bias, lower prior levels of anxiety and depression were suggested in both cohorts, reflecting the significant psychological impact of a myeloma diagnosis. At 6-month follow-up, both patients and carers perceived benefits from the support groups (Table 1). All reported increased understanding of disease, treatments and side-effects. Note that, 90% of patients found the sessions helpful in some regard in increasing confidence in planning for the future. Almost all, (97% of patients; 90% carers) reported an improvement in overall emotional well-being, and for those who experienced isolation or loneliness prior to the groups, all reported some level of reduced isolation. Sharing experiences with peers was valued (78% of patients; 80% carers) and this was echoed in seven of nine free text comments by carers which mentioned the ‘camaraderie of meeting others in similar situation and how they cope’; ‘talking to others who are experiencing the same’; ‘compare notes’; ‘meet with others who understand’ and ‘realize I'm not alone.’ At 6 months, no significant changes were noted in depression in either cohort, or in anxiety in patients compared to baseline. However, scores as assessed per GAD-7 scale, highlighted a reduction in anxiety among carers from 50% to 18%. Whilst the absence of a control group limits the ability to demonstrate whether observed reductions in anxiety were due to attending the groups, rather than the passage of time, these findings nevertheless suggest potential psychological benefit from attending the groups. Figure 1 demonstrates the change in anxiety scores over time described by carers. This evaluation highlights substantial psychosocial challenges faced by myeloma patients and carers, with carers often reporting equal or greater emotional burden and unmet informational needs. Participation in a peer support group with targeted education sessions based on the identified priorities of patients and carers was associated with improvements in understanding disease and treatments, emotional well-being, addressing financial matters, reducing isolation and confidence in planning for the future. This suggests that the groups are helping to address some of the baseline priorities reported by patients and carers alike. Limitations include a small sample size and unpaired, anonymous questionnaires, preventing statistical analysis. These findings highlight the often-overlooked needs of carers alongside patients living with myeloma and reinforce the value of including carers in interventions such as support groups, which promote peer connection, shared experience, alongside targeted education. As survival in myeloma improves, future research should focus on evaluating the emotional burden experienced by both patients and carers in larger cohorts, to inform the development of sustainable, holistic interventions that address the needs of both groups. Kerrie Sweeney wrote the manuscript, co-designed and distributed questionnaires, collected and interpreted data and analysed results. Aaron Niblock co-designed questionnaires, provided oversight and guidance during the project, discussed results and critically reviewed the manuscript. Joseph Bulger assisted in gathering and analysing data, discussed results and contributed to the manuscript. This article has been read and approved by all the authors. We would like to acknowledge Valerie Magowan, Cancer Focus Northern Ireland, for her invaluable leadership and support in the delivery of the support groups. We are grateful to Professor John Snowden for a helpful review of the manuscript. The authors have nothing to report. The authors have nothing to report. Participation in this evaluation was voluntary; consent for publication was obtained. The authors declare no conflicts of interest. The data that support the findings of this study are available from the corresponding author upon reasonable request.