Summary:
Introduction: Chimeric Antigen Receptor (CAR) T-cell therapy is a personalized immuno-oncology approach within adoptive cell therapies (ACTs). Currently administered in both standard-of-care and clinical trial settings, CAR-T has shown promising efficacy in relapsed and refractory lymphomas. Understanding the experiences of patients and their informal caregivers is essential to supporting person-centered care in this context. This study is a sub-analysis of a larger qualitative systematic review investigating patients’ and informal caregivers’ experiences across different phases of the ACTs care continuum. Methods: A systematic search was conducted across Medline, Embase, CINAHL, APA PsycInfo, Cochrane, Web of Science, ProQuest Dissertations & Theses, and Google Scholar up to May 8, 2024. Studies were screened in duplicate and appraised using the JBI Critical Appraisal Checklist for Qualitative Research, with data extracted and synthesized using a meta-aggregation approach. MAXQDA was employed to inductively derive codes and generate co-occurrence networks between key elements, enabling both the analysis and visualization of patients’ and informal caregivers’ experiences across different phases of the CAR-T trajectory. Results: Six qualitative studies were included in this sub-analysis, capturing the experiences of patients with relapsed and refractory lymphoma (n = 6) undergoing CAR-T therapy and informal caregivers (n = 2) in standard-of-care (n = 5) and clinical trial (n = 2) settings, published between 2021 and 2024. Four key phases were identified: (1) therapy access and presentation (n = 3), (2) pre-treatment (n = 5), (3) treatment (n = 5), and (4) post-treatment (n = 6). The meta-aggregation approach revealed challenges specific to each phase and actor, spanning physical, cognitive, psychological, emotional, social, financial, professional, communication, and informational domains. These challenges originate from the unpredictable severity of CAR-T-related toxicities, their long-term impact on patients’ lives, and the complexities of the care pathway, including issues related to access, coordination, and procedural intricacies. Findings emphasize the diverse coping strategies employed throughout the entire trajectory and underscore the need for person-centered care. Conclusions: This sub-analysis identified unique challenges that patients with lymphoma and their informal caregivers may encounter throughout the CAR-T care pathway. The findings emphasize the need for phase- and actor-specific interventions and enhanced support systems to mitigate the impact of CAR-T. Implications for nursing practice include the development of decision-support tools, implementation of informal caregiver support programs, establishment of dedicated CAR-T navigation services, and provision of financial navigation support to better facilitate person-centered care.
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