Impact of Suspensions and Reactivations from Waitlist on Quality of Life in Canadian-Australasian Randomised Trial of Screening Kidney Transplant Candidates for Coronary Artery Disease (CARSK)

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Background: There is limited information on individuals’ health-related quality of life (HRQoL) on the waiting list for a kidney transplant. Understanding the HRQoL among patients undergoing suspensions and reactivations could shed light on their experiences and the impact of illness burden. Methods: The HRQoL among eligible participants (not transplanted or deceased within 12 months) was assessed using the EuroQoL 5 domains, five levels (EQ-5D-5L) questionnaire administered at baseline, 6 and 12-months. The HRQoL index ranged from 0 (dead) to 1 (full health). Within these 6-month intervals, the effect of waitlist suspensions and reactivations on HRQoL was examined using Generalized Estimating Equations models. Factors associated with HRQoL such as age, sex, ethnicity, dialysis modality, time on dialysis, diabetes status, cause of end-stage kidney disease, prior kidney transplant, baseline EQ-5D score, and waitlist status (never suspended, suspended but not reactivated, suspended and reactivated) were investigated. Results: 1,457 patients from Australia (32%), New Zealand (17%), and Canada (51%) were recruited. From baseline to 12 months, 1,013 patients were suspended, 170 patients were suspended and not reactivated, and 187 were suspended and reactivated. Average age was 54 years (SD 12), 63% males, 35% diabetics. Of these, 671 (46%) were managed with facility-based hemodialysis, 247 (17%) with home hemodialysis, and 539 (37%) with peritoneal dialysis. On average, patients spent 1,039 days on dialysis. The mean EQ5D index at baseline, 6 months, and 12 months was 0.87 (SD 0.14), 0.89 (SD 0.13), and 0.89 (SD 0.14), respectively. Compared with patients not suspended, those who were suspended and not reactivated had a lower mean EQ5D index (0.042, 95% CI 0.014 to 0.070, p = 0.004). Conclusions: Our findings indicate that patients’ suspension from the waitlist due to health factors making them unfit for a deceased donor kidney transplant significantly impacts their self-reported HRQoL. - Adjusted Mean EQ5D index Visits Never suspended Suspended and not reactivated Suspended and reactivated 6 months 0.891 (95% CI 0.842 - 0.940) 0.894 (95% CI 0.798 - 0.900) 0.878 (95% CI 0.829 - 0.928) 12 months 0.887 (95% CI 0.838 - 0.935) 0.845 (95% CI 0.794 - 0.895) 0.874 (95% CI 0.825 - 0.923)

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