A Qualitative Study of the Experiences of Living With Multiple Myeloma

LeBlanc, Matthew Roger; LeBlanc, Thomas W.; Bryant, Ashley Leak; Pollak, Kathryn I.; Bailey, Donald E.; Smith, Sophia K.

doi:10.1188/21.onf.151-160

Cited by 17 publications

(12 citation statements)

References 43 publications

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“…Recent years have seen rapid evolution in myeloma treatments [ 6 ], such that patients now have access to a wealth of treatment options [ 7 ] and have realized corresponding improvement in survival rates [ 8 ]. It is now common for myeloma patients to experience periods of symptom-free remission during which they continue to undergo maintenance therapy, although most patients eventually relapse, and the periods of remission shorten between each treatment cycle [ 9 ]. While multiple myeloma remains incurable, these advances have meant that many patients now experience it as a chronic disease, rather than as one that is rapidly terminal [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

Patient perspectives on considerations, tradeoffs, and experiences with multiple myeloma treatment selection: a qualitative descriptive study

et al. 2023

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Background Advances in multiple myeloma treatment and a proliferation of treatment options have resulted in improved survival rates and periods of symptom-free remission for many multiple myeloma patients. As a result, health-related quality of life (HRQoL) concerns related to myeloma treatments have become increasingly salient for this patient population and represent an important consideration guiding patients’ treatment choices. To gain an understanding of patients’ experiences with choosing myeloma therapies and explore the HRQoL concerns that are most important to them, we interviewed a diverse sample of US-based multiple myeloma patients about their treatment considerations. Methods We conducted a qualitative descriptive study using in-depth interviews. Participants reflected on (1) the factors that were most important to them when thinking about multiple myeloma treatment and how these have changed over time, (2) how they might weigh the importance of treatment efficacy vs. side effects, (3) trade-offs they would be willing to make regarding efficacy vs. HRQoL, and (4) treatment changes they had experienced. Interviews were audio-recorded and transcribed, and narratives were analyzed using applied thematic analysis. Results We interviewed 21 patients, heterogeneous in their disease trajectory and treatment experience. Participants were 36 to 78 years, 52% female, and 38% Black. Efficacy was named as the most important treatment consideration by almost two-thirds of participants, and over half also valued HRQoL aspects such as the ability to maintain daily functioning and enjoyment of life. Participants expressed concern about potential treatment side effects and preferred more convenient treatment options. Although participants stated largely trusting their clinicians’ treatment recommendations, many said they would stop a clinician-recommended treatment if it negatively impacted their HRQoL. Participants also said that while they prioritized treatment efficacy, they would be willing to change to a less efficacious treatment if side effects became intolerable. Conclusions Our findings link to other reports reflecting considerations that are important to multiple myeloma patients, including the importance placed on increasing life expectancy and progression-free survival, but also the tension between treatment efficacy and quality of life. Our results extend these findings to a racially diverse US-based patient population at different stages in the disease trajectory.

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Section: Introductionmentioning

confidence: 99%

Patient perspectives on considerations, tradeoffs, and experiences with multiple myeloma treatment selection: a qualitative descriptive study

et al. 2023

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“…Some patients found that illness and treatment was "permanently and severely interfered with their everyday and professional lives" [44], with patients citing a ceiling to the amount of work they can manage while experiencing fatigue and other side efects [39,45]. LeBlanc reports a third of their sample having to leave work due to the impact of side efects [46]. Loss of strength for physical jobs was important [41], as was fatigue for a range of jobs [45,47] including driving to/from work [39,43,48].…”

Section: Teme 1: Side Efects Medicines and Stigma At Workmentioning

confidence: 99%

“…Partners may experience paradoxical guilt in that they want to help, but also maintain their independence [46] and thus, maintain relational equilibrium.…”

Section: "Some Days I Was a Bit Sassy With Them [Work Accounts]mentioning

confidence: 99%

“…Te loss of a job and consequent renegotiation of identity are triggers for depression and impact family relationships and fnances [46]. One carer expressed that she was not ready to give up her career, craving the "buzz" that comes with the environment [53] work was often viewed through a lens of time and the life course.…”

Section: Teme 3: Te Creation and Maintenance Of Self Throughmentioning

confidence: 99%

“…One carer expressed that she was not ready to give up her career, craving the "buzz" that comes with the environment [53] work was often viewed through a lens of time and the life course. Revisiting and changing priorities meant that the old work identity was substituted for a new one, such as newly becoming self-employed or becoming a stay-at-home parent [46,53]. Serious illness destabilised some anticipated futures and disrupted people's ability to plan for the future including retirement [66,70].…”

Section: Teme 3: Te Creation and Maintenance Of Self Throughmentioning

confidence: 99%

See 2 more Smart Citations

Multiple Myeloma in People of Working Age: A Systematic Review and Evidence Synthesis of Experiences of Paid and Unpaid Work

Forbat

Sedgley

Bellussi

2023

European Journal of Cancer Care

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Introduction. This review sought to synthesise the qualitative evidence pertaining to the experiences of myeloma patients and relatives of work, given the distinct symptom burden and illness trajectory. Methods and Designs. CINAHL, Medline, Web of Science, PsychINFO, SocIndex were searched on 22-Apr-2022. No limiters were used for language or date of publication. CASP was used for critical appraisal. An integrative synthesis was conducted to inductively construct analytic themes PROSPERO CRD42022323137. Results. 34 articles were included, published from 2004 to 2022. Nineteen were assessed as having low risk of bias, and four with moderate risk of bias. The following four themes were derived from analysis of the papers: (i) side effects, medicines, and stigma; (ii) relationships; (iii) creation and maintenance of identity; (iv) privilege and income. Conclusion. Myeloma impacts the engagement of patients and relatives in paid and unpaid work, yet very little is currently known on how the cancer impacts these important interdependent systems. Addressing workplace stigma, understanding the role of workplace relationships, the construction of self through work, interpreting data through a lens of life-course and, privilege offer helpful starting points.

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Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome

Roydhouse,

Thompson,

Nicholson

et al. 2023

Psycho-Oncology

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ObjectiveMultiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia.MethodsExploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face‐to‐face in 2022. Thematic analysis was used.ResultsTen groups were held with 48 participants (n = 23 with MM, n = 9 with MDS, n = 16 carers). Key themes arising from focus groups with people living with MM/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome.ConclusionFuture work should consider what supports are required for patients acting as carers, and carer burden should not be assumed.

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A Qualitative Study of the Experiences of Living With Multiple Myeloma

Cited by 17 publications

References 43 publications

Patient perspectives on considerations, tradeoffs, and experiences with multiple myeloma treatment selection: a qualitative descriptive study

Patient perspectives on considerations, tradeoffs, and experiences with multiple myeloma treatment selection: a qualitative descriptive study

Multiple Myeloma in People of Working Age: A Systematic Review and Evidence Synthesis of Experiences of Paid and Unpaid Work

Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome

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