Experience of patients considering or using checkpoint inhibitors in cancer treatment: a systematic review of qualitative research

Abstract

Increasing numbers of patients with cancer are considering or undergoing immunotherapy, however, little is known about patients’ perspectives on this treatment. We undertook a systematic review for use by clinicians and researchers, consolidating published qualitative research studies on patient experience of checkpoint inhibitor therapy. A search of Medline, Embase, and PsycINFO was carried out for publications in English to 30 June 2022. Publications were selected if they reported a qualitative study of patient experience with checkpoint inhibitor therapy for cancer, either by patients or their families or carers. Quality was appraised using the Johanna Briggs Institute quality assessment tool for qualitative studies. A thematic synthesis was conducted. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses standard was followed. We identified 17 eligible studies published between 2017 and 2022, 9 using mixed methods, and 8 solely using qualitative methods. Most studies reported on the experiences of patients with advanced stage melanoma and were using the earliest approved checkpoint inhibitors for cancer therapy. Studies met most formal quality criteria but varied in the extent of their qualitative explorations of data; some mixed methods studies had limited reporting of qualitative results. Through thematic synthesis, we categorized study findings into four domains: (1) treatment decision-making; (2) success with immunotherapy; (3) treatment-related adverse events (AEs); and (4) quality of life on immunotherapy. Our review identified several areas with potential for improving the care system. These include, for example: routinely linking patients to peers who have experienced this therapy; improving the capacity of patients and carers to identify and report AEs faster; and supporting patients and carers to live with changed circumstances after successful treatment. Most studies focused on patients who had successful treatment, effectively excluding those who do not respond or who discontinue due to serious side effects; future research targets are suggested.