Consumer involvement in ADPKD guidelines

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

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 polycystic kidney disease (ADPKD). 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. Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management, and psychosocial care (mental health, counseling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth, and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control, and significance of impact. Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.