Understanding people’s decisions when choosing or declining a kidney transplant: a qualitative evidence synthesis

OBJECTIVES: To synthesise qualitative research exploring patients’ perspectives, experiences and factors influencing their decision-making preferences when choosing or declining kidney transplantation. DESIGN: A qualitative evidence synthesis. DATA SOURCES: Electronic databases were searched from 2000 to June 2021: PubMed, MEDLINE, CINAHL, Embase, PsycINFO, Web of Science, ProQuest Core Databases for Dissertations and Theses, and Google Scholar. ELIGIBILITY CRITERIA: Qualitative studies exploring and reporting decision-making preferences of people with kidney disease, which reported influencing factors when choosing or declining kidney transplantation, published in English from high-income and middle-income countries. DATA EXTRACTION AND SYNTHESIS: Titles were screened against the inclusion criteria. Thematic synthesis was done with the use of the Critical Appraisal Skills Programme qualitative checklist to assess study quality, and assessment of confidence in the qualitative findings was done using the Grading of Recommendation, Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative Research. FINDINGS: 37 studies from 11 countries reported the perspectives of 1366 patients with kidney disease. Six descriptive themes were developed: decisional preferences influenced patients’ readiness to pursue kidney transplantation, gathering sufficient information to support decision-making, navigating the kidney transplant assessment pathway, desire for kidney transplantation, opposed to kidney transplantation and uncertainties while waiting for the kidney transplant. A new enhanced theoretical model was developed to aid understanding of the complexities of decision-making in people with kidney disease, by integrating the Theory of Planned Behaviour and the Adaptive Decision Maker Framework to incorporate the novel findings. CONCLUSION: The synthesis provides a better understanding of the extremely complex decision-making processes of people with kidney disease, which are aligned to their kidney transplantation preferences. Further research is needed to better understand the reasons for declining kidney transplantation, and to underpin development of personalised information, interventions and support for patients to make informed decisions when presented with kidney replacement options. PROSPERO REGISTRATION NUMBER: CRD42021272588.