Health-related quality of life across all stages of autosomal dominant polycystic kidney disease

Abstract

Background: A limited number of studies have assessed health-related quality of life (HRQoL) in autosomal dominant polycystic kidney disease (ADPKD). Results to date have been conflicting and studies have generally focused on patients with later stages of the disease. This study aimed to assess HRQoL in ADPKD across all stages of the disease, from patients with early chronic kidney disease (CKD) to patients with end-stage renal disease.

Methods: A study involving cross-sectional patient-reported outcomes and retrospective clinical data was undertaken April-December 2014 in Denmark, Finland, Norway and Sweden. Patients were enrolled into four mutually exclusive stages of the disease: CKD stages 1-3; CKD stages 4-5; transplant recipients; and dialysis patients.

Results: Overall HRQoL was generally highest in patients with CKD stages 1-3, followed by transplant recipients, patients with CKD stages 4-5 and patients on dialysis. Progressive disease predominately had an impact on physical health, whereas mental health showed less variation between stages of the disease. A substantial loss in quality of life was observed as patients progressed to CKD stages 4-5.

Conclusions: Later stages of ADPKD are associated with reduced physical health. The value of early treatment interventions that can delay progression of the disease should be considered.

Keywords: ADPKD; chronic kidney disease; patient-reported outcomes; polycystic kidney disease; quality of life.

FIGURE 1

Norm-based scoring of the Short Form-12 Health Survey (SF-12) profile. All SF-12 scales are standardized to have a mean of 50 and standard deviation of 10 in the general 1998 US population (range: 0–100). Boxes extend from the 25th to 75th percentiles with the median highlighted; whiskers (vertical lines) extend 1.5 times the interquartile range. PF, physical functioning; RP, role physical; BP, bodily pain; GH, general health; VT, vitality; SF, social functioning; RE, role emotional; MH, mental health.