Socioeconomic disadvantage contributes to ethnic disparities in multiple myeloma survival: a matched cohort study

Buradagunta, Christopher Staffi; Garacci, Emma; D’Souza, Anita; Dhakal, Binod; Devata, Sumana; Janz, Siegfried; Thrift, Aaron P.; Hari, Parameswaran; Stolley, Melinda R.; Dong, Jingjing

doi:10.1038/s41408-022-00681-x

Cited by 4 publications

(1 citation statement)

References 19 publications

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“…We attempted to mitigate this by testing the thematic analysis within a participant workshop, to gain reflections on themes raised by others. We also note that the themes we have identified, including barriers to accessing CAR T-cell therapy, align with those identified elsewhere 3 6 8 13 20. We also acknowledge that applying a deductive approach to thematic analysis may have restricted the reporting of themes among participants.…”

Section: Discussionsupporting

confidence: 55%

Experiences and perspectives on chimeric antigen receptor (CAR) T-cell therapy among recipients, carers and referrers (RE-TELL): a qualitative study to inform CAR T-cell service design

Fyfe,

Anstis,

Kapadia

et al. 2024

BMJ Open

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ObjectivesRE-TELL is a qualitative study, which aims to understand patient, support person, clinician and coordinator experiences and perspectives of chimeric antigen receptor (CAR) T-cell therapy, to inform design of a clinical CAR T-cell service in Aotearoa New Zealand.DesignSemistructured qualitative interviews focused on domains of: experience through treatment, elements that work well and those that could be improved on. Interviews used thematic analysis to identify key themes. A workshop was held to obtain participants’ reflections on interim analysis and proposed improvements.ParticipantsNew Zealanders with experience of CAR T-cell therapy, including recipients, support persons, clinicians and coordinators.ResultsWe interviewed 19 participants comprising 5 CAR T-cell recipients, 3 support persons, 6 clinicians and 5 coordinators. Four participants identified as Māori. Thematic analysis identified three global themes. The first, ‘sociocultural factors impact CAR T access’, identified potential sources of inequity including geographic, financial and informed consent barriers. The second, ‘varying emotions, roles and enablers’, identified an easier treatment experience compared with alternatives; an underwhelming cell administration process; frustration with inpatient monitoring; burden on support persons and importance of ‘bridge’ organisations such as charities and patient support groups. Lastly, ‘golden opportunities: reimagining CAR T service delivery’, suggested: improved geographical access to CAR T-cell therapy, while retaining consolidated clinician experience; a ‘dashboard’ with information on CAR T-cell treatment, time frames and manufacture; a health navigator to co-ordinate non-medical aspects of treatment and signpost care; embedding of indigenous data sovereignty and ownership of cells; a cell infusion ceremony, incorporating family involvement and Māori cultural elements and outpatient administration and monitoring where possible.ConclusionThis study documented the current experience of New Zealanders receiving CAR T-cell therapy and identified opportunities for future service development. These insights are relevant to service design within Aotearoa New Zealand, and other countries developing equitable CAR T-cell services.

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Section: Discussionsupporting

confidence: 55%

Experiences and perspectives on chimeric antigen receptor (CAR) T-cell therapy among recipients, carers and referrers (RE-TELL): a qualitative study to inform CAR T-cell service design

Fyfe,

Anstis,

Kapadia

et al. 2024

BMJ Open

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Hospital facility characteristics and socioeconomic factors on outcomes and treatment in patients with multiple myeloma: National Cancer Database analysis

et al. 2023

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Understanding Myeloma-Related Information Needs and Communication Preferences Within Black American Communities: An Exploratory Study

Esquivel,

Tzeng,

Treiman

et al. 2024

J Canc Educ

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Myeloma is the third most common blood cancer and one of the most complex and expensive cancers to treat. Black Americans face health disparities related to myeloma incidence, age at diagnosis, access to novel treatments, and mortality. To help reduce health disparities among Black Americans through education and outreach, the Leukemia & Lymphoma Society has implemented its Myeloma Link initiative. In 2022, a formative, qualitative evaluation was conducted across the 15 U.S. cities that implemented Myeloma Link to better understand the information and communication needs and preferences of three groups: patients, community members, and primary care providers (PCPs). Data collection included interviews with eight patients, two focus groups with a total of ten community members, and interviews with six PCPs. Patients expressed wanting information about treatment experiences, including clinical trials, and emotional and peer support services, particularly from other Black American patients. Community members were largely unfamiliar with myeloma and desired outreach via trusted community organizations about disease signs and symptoms. Both groups discussed the importance of self-advocacy within the current healthcare system and wanted actionable messaging, rather than messaging leading with disparities statistics. PCPs described systemic capacity and time challenges in the context of needing to address more frequently encountered health conditions; nonetheless, PCPs welcomed information and brief trainings about myeloma diagnosis and treatment options, referrals to specialists, and how to improve care, prognosis, and caregiver support. Findings underscore the importance of outreach initiatives such as Myeloma Link to help meet these needs and reduce health disparities.

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Socioeconomic disadvantage contributes to ethnic disparities in multiple myeloma survival: a matched cohort study

Cited by 4 publications

References 19 publications

Experiences and perspectives on chimeric antigen receptor (CAR) T-cell therapy among recipients, carers and referrers (RE-TELL): a qualitative study to inform CAR T-cell service design

Experiences and perspectives on chimeric antigen receptor (CAR) T-cell therapy among recipients, carers and referrers (RE-TELL): a qualitative study to inform CAR T-cell service design

Hospital facility characteristics and socioeconomic factors on outcomes and treatment in patients with multiple myeloma: National Cancer Database analysis

Understanding Myeloma-Related Information Needs and Communication Preferences Within Black American Communities: An Exploratory Study

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