Patient survey to identify reasons for non-adherence and elicitation of ă quality of life concepts associated with immunosuppressant therapy in ă kidney transplant recipients

International audienceBackground: Renal transplantation (RT) is considered the treatment of ă choice for end-stage renal disease compared to dialysis, offering better ă health-related quality of life (HRQoL) and higher survival rates. ă However, immunosuppressants are essential for the long-term survival of ă kidney grafts and patients' non-adherence to their medication leads to ă poor outcomes. Immunosuppressants can also significantly alter patients' ă HRQoL because of their side effects and the complex chronic medication ă regimen they represent. ă Purpose: To elicit key concepts related to adherence to ă immunosuppressant therapy (IT) and reasons for non-adherence in terms of ă patient reported outcomes, side effects, and the impact of the ă medication on HRQoL in RT population, including patient preference of ă once daily over twice-daily immunosuppressive regimen. Results were used ă to develop an IT-specific conceptual framework and provide suggestions ă for improving patients' adherence to IT. ă Materials and methods: Interviews were conducted with three clinical ă experts to determine key concepts related to RT and immunosuppressants. ă Thirty-seven participants in four focus groups were asked to cite ă important concepts related to adherence and impact of IT on HRQoL and to ă rate them. Qualitative analysis was conducted to code participants' ă responses. ă Results: Non-adherence among participants where admitted was ă unintentional. The reason for this included forgetfulness, interference ă with lifestyle, being asleep at the time the medication should be taken, ă change in routine, and impact of side effects. Overall, participants ă reported that the evening dose was more problematic to remember and that ă the exclusion of this dose could make them more adherent. Participants ă also reported that IT impacted on their HRQoL in a number of ways ă including: placing restrictions on their lifestyle, causing anxiety, or ă impairing their ability to work. ă Conclusion: This study provides qualitative evidence about the barriers ă to IT adherence and the components of HRQoL that are important from the ă perspective of RT patients. The developed conceptual framework of ă IT-HRQoL in RT transplants, including social, psychological, and work ă life domains, can be used to inform the development of a new IT-specific ă measure of HRQoL in RT patients for use in head-to-head clinical trials ă or observational studies. Despite limitations associated with the number ă and the age range of patients recruited, this study suggests that a ă change in the regimen from twice-daily to once daily among other ă measures could improve their adherence to IT and their HRQoL by placing ă less restrictions on their lifestyles