Quality of Life and Needs of Patients Undergoing CAR‐T Cell Therapy: The Patients’ Perspective

Background Despite the strong emphasis in recent scientific literature on the pharmacological features of CAR‐T cells, patients’ quality of life (QoL) and needs, by contrast, have received little attention. Aim This study aims to investigate patients’ perspectives on their QoL and needs in a referral centre for CAR‐T cell treatment in Italy. Methods This is a descriptive, qualitative and prospective study conducted at a single centre. Patients were recruited from a list of those who underwent the treatment or who were eligible to do so. Patients were asked to participate in a semistructured interview. The number of people to be interviewed was not predetermined but was established continuously until meaning saturation was achieved. The interviews were audio recorded, transcribed verbatim, and analysed through constructivist lenses using reflexive thematic analysis. Results Participants were 12 patients (age mean: 57.88; SD = 9.62; range = 39–70) enrolled in an Italian Comprehensive Cancer Center. From the analysis of the interviews, 7 themes were identified: (1) therapeutic journey to reach CAR‐T cell therapy; (2) CAR‐T cell images; (3) perception of the quality of care received; (4) three challenging moments; (5) emerging issues to address; (6) coping strategies and (7) needs. Some themes have been organised into subthemes that detail their specific aspects. Starting from the quotations, 41 needs have been identified and organised into 5 macro areas: (1) needs during hospitalisation; (2) existential needs; (3) needs for improving QoL; (4) need for quality and quantity of information and (5) needs for care. The list of needs has been transformed into a checklist, serving as a preliminary step for subsequent studies aimed at identifying and quantifying the needs of patients. Conclusions Results indicate that the QoL of patients undergoing CAR‐T cell therapy is impaired during hospitalisation and in the subsequent months following infusion. Physical symptoms including fatigue, drowsiness, cognitive slowing or dysfunction emerged. Nonetheless, patients employ various coping strategies to cope with these challenging periods. A multitude of needs, often unaddressed, has emerged. For this matter, a first draft for a checklist of needs has been realised. Should future studies validate its structure, this tool may prove beneficial in both clinical and research settings to identify and monitor patients’ needs throughout the continuum of their treatment pathway.