FP364INCREASED PSYCHOSOCIAL BURDEN AND ADVERSE QUALITY OF LIFE IN AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE

Abstract

Introduction and Aims: Autosomal dominant polycystic kidney disease (ADPKD) has a well described clinical burden and is the commonest inherited cause of end-stage renal disease (ESRD). However psychosocial challenges are under recognised and have not been previously reported in European patients. In this study, we aim to evaluate the quality of life, mood, perceived social support and psychosocial risk of having a diagnosis of ADPKD in patients with various stages of chronic kidney disease, not on renal replacement therapy, from a large UK centre. Method(s): A postal questionnaire incorporating 3 validated forms: Kidney Disease Quality of Life Short Form 1.3 to assess quality of life; Patient Health Questionnaire 9 (PHQ9) to screen for depression; Multidimensional Scale of Perceived Social Support (MSPSS) to evaluate perceived social support and a novel modified instrument to study the psychosocial impact of coping with a diagnosis of ADPKD (ADPKD-PSRI) was sent to 350 patients with stages 1-5 chronic kidney disease, not on renal replacement therapy. Results were compared by eGFR and mean kidney length on ultrasound (proxy for total kidney volume). Statistical analyses were performed using SPSS. Result(s): The response rate was 45% (158/350); 19 questionnaires were incomplete and not included. The mean age (53.4+/-15.7 years, range 19-89 years) of the 139 responders (ratio 0.7M:F) was higher than non-responders (45.9+/-15.5 years, range 18-85 years, p<0.001) but there was no gender difference. Patients with lower eGFR (less than 30ml/min) or larger kidneys (mean length greater than or equal to 17cm) reported significantly reduced quality of life (physical component score (PCS) and increased psychosocial risk. "Clinically significant" depression was reported in 22% and was significantly associated with more pain, lower PCS, less perceived social support and increased psychosocial risk. Younger age and lower PCS correlated independently with depression. 74% reported more problems in their life because of their ADPKD and 72% were concerned about progression to ESRD. 62% felt guilty about passing ADPKD on to their children. Increased psychosocial risk was independently linked with larger kidneys, female gender, lower PCS and having a known cerebral aneurysm. Conclusion(s): This is the first European study to report an increased psychosocial risk and adverse quality of life in ADPKD. Depression was associated with younger age possibly indicating difficulties coping with the diagnosis. We highlight the previously unrecognised increased psychosocial and physical burden in patients with ADPKD to facilitate the future design and provision of patient-centred support services.