Experiences and needs of patients with sarcoma : a qualitative meta-synthesis

Abstract

Purpose: To systematically identify, summarize, and synthesize qualitative evidence on the experiences and needs of patients living with sarcoma, providing insights into their multidimensional challenges. Methods: This qualitative meta-synthesis follows the ENTREQ guidelines. Seven electronic databases (PubMed, Web of Science, Scopus, Embase, Cochrane Library, CINAHL, and PsycINFO) were searched up to November 2024. Two reviewers independently conducted the study screening and data extraction. The quality was evaluated using the Joanna Briggs Institute's Qualitative Research Standard Assessment tool. Thematic analysis was used for data synthesis. Results: Twenty-seven studies were included in this meta-synthesis. Three analytical themes emerged: (1) “Self-perceived health challenges after diagnosis” highlighting the physical and emotional challenges faced by patients; (2) “Mixed experiences during social interactions” reflecting the complex dynamics in relationships with friends, family, and healthcare providers; and (3) “Unfriendliness in the society towards sarcomas” emphasizing societal barriers such as employment limitations, financial burdens, and stigma. Conclusions: Sarcoma patients face significant challenges that extend beyond the individual health condition, impacting their interpersonal relationships and social wellbeing. A comprehensive understanding of the experiences and needs of sarcoma patients on their disease journey can help provide effective management for patients with this rare disease. Addressing these challenges requires a holistic approach involving healthcare providers management, organizational change, community support, and public policy reform.