Giving young patients with ADPKD a voice: preliminary validation of the 'Symptom and impact scale for adolescents with autosomal dominant polycystic kidney disease' (SAIL-ADPKD).

Unpredictable pain and reduced quality of life are common in adults with autosomal dominant polycystic kidney disease (ADPKD) and occur even before gross kidney enlargement or markedly decreased kidney function. Very little is known about pain in adolescents with ADPKD, and there are no patient-reported outcome measures (PROMs) in youth. An age-appropriate questionnaire on pain, impact, symptoms, and worries was created by pediatric nephrologists, clinical psychologists, pain specialists, patient representatives, and external reviewers. Self- and proxy-reported versions exist in English and Du