Patient Experience of Genetic Testing in Living Kidney Donation
Project Title: Exploring patient and donor perspectives on genetic risk assessment in living kidney donation: A qualitative study
Living kidney donation is a difficult process for recipients and donors alike. The process is further complicated in cases where donors go on to develop kidney disease due to genetic risk factors which were unknown to them at the time of donation. In this regard, genetic screening may be helpful in informing the decision-making process and potentially improving outcomes. However, genetic screening has not been widely implemented due to a lack of high-quality evidence on its clinical utility in living kidney donation. Accordingly, there are no published reports exploring patient and donor perspectives in this context. In addition to evaluating the clinical utility of genetic assessments, this study aims to describe patient and donor perspectives on genetic risk assessment, including their beliefs, expectations, desires, concerns and the impact of this process on their overall experience. This qualitative descriptive study will (1) identify potential barriers and facilitators to the integration of genetic evaluation in the living donor program, and (2) provide insight on how to optimize the genetic assessment process to ensure patient-centred care across its various stages of the donation process, including pre and post screening. This study is a component of a larger study, led by Dr. Connaughton.
Semi-structured qualitative interviews were conducted with kidney donors, recipients, and potential donors who were deemed ineligible due to positive genetic screening results. The interview explored patient and donor perspectives on genetic screening, including their beliefs, expectations, desires, concerns and the context in which they feel it has, or will impact their experience.
Principal Investigators: Maria Mathews (Western University), Dervla Connaughton (Western University)
