Patient-reported outcome reference values for patients after kidney transplantation.

BACKGROUND: Patient-reported outcomes (PROs) are important in managing kidney transplant patients. Although, there are many instruments available to assess PROs, such as health-related quality of life (HRQOL), they are rarely collected in routine nephrology practices. Therefore, the aim of this study was the determination of reference values for physical and psychosocial symptom burden in kidney transplant patients.
METHODS: Patients with a history of kidney transplantation being in aftercare at a nephrological outpatient unit (n = 120) were consecutively recruited, and a computer-based PRO assessment was used to assess their HRQOL reference values. It covered a broad range of clinically relevant physical and psychological symptoms, adherence to immunosuppressants, and disease-specific quality of life. On an average, PROs were assessed 2.9 times per patient, 351 times in total.
RESULTS: For PRO monitoring in kidney transplant patients, we consider the 10th/90th percentile as being of particular clinical relevance, as patients exceeding these scores are likely to be in need of additional care.
CONCLUSIONS: With continuously rising survival rates after kidney transplantation, HRQOL of long-term transplant patients becomes increasingly important, and it is generally accepted that HRQOL improves after successful kidney transplantation. We used a computerized PRO monitoring to determine HRQOL reference values for outpatient kidney transplant patients. Routine PRO monitoring may facilitate the identification of patient issues relevant to treatment, and may contribute to improved symptom and side-effect management. Future studies providing detailed PRO values for stratified patient samples are needed.