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

• Published in: Nephrology (Carlton, Vic.) Vic.), 2016-02, Vol.21 (2), p.122-132
• Main Authors: Tong, Allison, Tunnicliffe, David J., Lopez-Vargas, Pamela, Mallett, Andrew, Patel, Chirag, Savige, Judy, Campbell, Katrina, Patel, Manish, Tchan, Michel C., Alexander, Stephen I, Lee, Vincent, Craig, Jonathan C., Fassett, Robert, Rangan, Gopala K.
• Format: Article
• Language: English
• Subjects: Adult; autosomal-dominant polycystic kidney disease; Caregivers - psychology; Cost of Illness; Disease Progression; Female; Focus Groups; guideline; Health Knowledge, Attitudes, Practice; Humans; Life Style; Male; Middle Aged; Nephrology - standards; Patient Participation; Patient Preference; Patient-Centered Care - standards; patient-centred care; Perception; Polycystic Kidney, Autosomal Dominant - diagnosis; Polycystic Kidney, Autosomal Dominant - psychology; Polycystic Kidney, Autosomal Dominant - therapy; Power (Psychology); Practice Guidelines as Topic - standards; Quality of Life; Risk Reduction Behavior; Treatment Outcome
• ISSN: 1320-5358; 1440-1797
• DOI: 10.1111/nep.12579

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, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, 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. Conclusion 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. Summary at a Glance This study compared priority topics from both consumer and health professional perspective for Kidney Health Australia Caring for Australasians with Renal Impairment (KHA‐CARI) clinical practice guidelines on autosomal‐dominant polycystic kidney disease. While there was considerable concordance, there were important differences in priority topics that consumers identified, suggesting that active consumer engagement into clinical guideline development is essential.