“A lot to manage and still have some kind of a life”: How multiple myeloma impacts the function and quality‐of‐life of Black–White patient–caregiver dyads

Abstract

BackgroundMultiple myeloma (MM) is an incurable debilitating blood cancer associated with the lowest health related quality of life (HRQoL) of all cancers. With nearly 88% of adults aged ≥55 years at diagnosis, age‐associated physical losses, comorbidities, and social factors contribute to worsening HRQoL. This qualitative study assessed dyadic (patient–informal caregiver) perspectives on the factors contributing to HRQoL in MM survivors.MethodsWe recruited 21 dyads from the UNC‐Chapel Hill Lineberger Comprehensive Cancer between 11/2021 and 04/2022. Participants completed a single dyadic semistructured interview capturing broad perspectives on MM. We used ATLAS. ti v 9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk, Inc.). This iterative approach allowed the exploration and identification of themes within and across transcripts.ResultsThe mean age at enrollment was 71 years (median: 71, range: 57–90) for patients and 68 years (median 67, range: 37–88) for caregivers. All dyads were racially concordant (11 Black/AA and 10 White). However, we aggregated the findings due to no consistent racial differences. Six themes related to (1) physical burden, (2) treatment challenges, (3) losses of independence, (4) caregiver burden, (5) patient and caregiver perseverance, and (6) adjustment to a new normal were identified. Dyads also experienced MM together, resulting in patients and caregivers experiencing changes in their ability to engage in physical and social activities, which further contributed to poor HRQoL. Patients' increased need for social support led to shifts in the caregiver roles, resulting in caregivers feeling burdened by their responsibilities. All dyads acknowledged the need for perseverance and adaptability to a new normal with MM.ConclusionThe functional, psychosocial, and HRQoL of older patients with MM and their caregivers remain impacted ≥6 months after a new diagnosis highlighting clinical and research opportunities to focus on preserving or improving the health of dyads living with MM.

“They don't care to study it”: Trust, race, and health care experiences among patient‐caregiver dyads with multiple myeloma

“…This approach was crucial given the disproportionate incidence and poor survival rates among Black/AA individuals with MM and the persistent disparities in research enrollment 11,12,32,33 . Our recruitment efforts involved maintaining a racially diverse research team, practicing cultural humility/sensitivity, prioritizing in‐person recruitment, and assigning a single‐trained qualitative interviewer to conduct all dyadic interviews 30 . The study included 21 dyads (42 participants) who completed a self‐report sociodemographic survey and a single joint semi‐structured interview.…”

“…recorded responses using REDCap 34,35 hosted at UNC‐CH. Sociodemographics were collected for descriptive purposes and stratified analysis 30 …”

“…This sample selection process also highlights participant reasons for ineligibility or exclusion from the study. T A B L E 1 Sociodemographics of enrolled participants (30). Finally, these beliefs were not limited to individuals with MM but reportedly remained deeply rooted within the broader Black/AA community.…”

“…2.3.3 | Semi-structured interviews S.J.G., J.M., and P.M. conducted mock interviews to refine the question sequence and structure. 30 J.M., the single interviewer, conducted remote joint interviews with each dyad as guided by Arksey et al 40 and Eisokovits et al 30,41 Before each interview, J.M. explained the study goals and had no prior relationship with the participants.…”

“…Note: Demographics reported in this table have also been previously published in part in an earlier publication by Bates-Fraser et al30 Abbreviations: No, number; SD, standard deviation; VA, Veterans Affairs.T A B L E 2 "when the [references doctors and researchers] don't know-when they're trying to figure out what the medicine's gonna do or not do…you wanna trust that they take their oath seriously, for to do no harm. But sometimes everybody ain't had the right heart.…”