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.

OBJECTIVES: RE-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. DESIGN: Semistructured 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. PARTICIPANTS: New Zealanders with experience of CAR T-cell therapy, including recipients, support persons, clinicians and coordinators. RESULTS: We interviewed 19 participants comprising 5 CAR T-cell recipients, 3 support persons, 6 clinicians and 5 coordinators. Four participants identified as Maori. 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 Maori cultural elements and outpatient administration and monitoring where possible. CONCLUSION: This 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.

Location and organizational features: what type of veteran communities participate in health programs?

BACKGROUND: Research shows that community-based membership organizations are effective partners in health promotion activities; however, most community organizations do not participate in such partnerships. There is little research regarding the geographical and organizational characteristics associated with participation. OBJECTIVE: We examined the factors associated with community-based veterans service organization (VSO) units' decision to participate in a health promotion project. METHODS: We collected location and organizational characteristics regarding 218 VSO units asked to participate in POWER, a partnership to improve hypertension self-management skills between the Medical College of Wisconsin, the Milwaukee Veterans Affairs Medical Center (VAMC) and Wisconsin branches of the American Legion, Veterans of Foreign Wars (VFW), Vietnam Veterans of America, and National Association of Black Veterans. We tested the association of these characteristics with participation using chi-square and Fisher's exact tests for categorical variables, and analysis of variance and the Kruskal-Wallis test for continuous variables. We used multivariable logistic regression to identify factors independently associated with participation. RESULTS: In bivariable analyses, likelihood of participation was positively associated with increasing membership (p < .001), meeting attendance (p < .001), publication of an organizational newsletter (p < .001), presence of a women's auxiliary (p = .02), and location within 44 miles of the VAMC (p = .047). On multivariable analysis, only meeting attendance and census tract-level educational attainment predicted participation. CONCLUSIONS: Greater membership sizes, meeting attendance, and more group resources might be important factors for researchers to consider when initiating community-based health and wellness programs.