Longitudinal psychosocial burden, quality of life, and digital supportive care preferences before and after CAR T-cell therapy: a prospective single-center observational study

Abstract Background Prospective studies of CAR T-cell therapy have described changes in patient-reported outcomes, but these are rarely examined alongside supportive care preferences and patients’ own accounts. We examined these components together across the treatment course. Methods This prospective single-center study included adults scheduled for CAR T-cell therapy at a German tertiary hospital. Of 52 patients in the screening/recruitment log, 32 who completed at least three of four assessments formed the longitudinal cohort. Assessments occurred before treatment (T0), during post-infusion hospitalization (T1), at or around discharge (T2), and seven to eight weeks after discharge (T3). Standardized measures assessed quality of life, anxiety/depression, loneliness, fear of progression, somatic symptoms, and social support. Unadjusted generalized estimating equations examined longitudinal change; supportive care items were summarized descriptively and open-ended responses analyzed thematically. Results The cohort included 17 male and 15 female participants; median age was 61.0 years (IQR 53.0-65.5), and 23/32 (71.9%) had multiple myeloma. Global health status/quality of life showed an overall time effect (p = 0.001), with the lowest mean at T2 and recovery by T3. Physical functioning was nominally lower at T2 (β = -14.450, p = 0.046); fatigue was nominally higher at T1 and T2 (β = 11.990, p = 0.015; β = 15.574, p = 0.008), and the QLQ-C30 summary score lower at T1 and T2 (β = -7.772, p = 0.006; β = -6.954, p = 0.035). Loneliness was nominally higher at T1 (β = 0.795, p = 0.009), whereas PHQ-4 scores changed little. Across timepoints, 60.0% to 70.0% considered post-discharge psycho-oncological support useful and 66.7% to 79.3% considered peer contact useful. Five themes concerned treatment uncertainty, physical decline, multidimensional support needs, accessible individualized digital support, and incomplete treatment understanding. Conclusions Patient-reported physical and functional burden was greatest during hospitalization and around discharge and improved by seven to eight weeks after discharge. Brief anxiety/depression scores captured only part of participants’ support needs. The findings can inform co-design and prospective evaluation of longitudinal supportive care approaches without establishing intervention effectiveness.