Journal article

Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease

Allison Tong, David J Tunnicliffe, Pamela Lopez-Vargas, Andrew Mallett, Chirag Patel, Judy Savige, Katrina Campbell, Manish Patel, Michel C Tchan, Stephen I Alexander, Vincent Lee, Jonathan C Craig, Robert Fassett, Gopala K Rangan

NEPHROLOGY | WILEY | Published : 2016

Abstract

AIM: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD). METHODS: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development. Thematic analysis was used to analyse the reasons for their choices. RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, flu..

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