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

Tong, Allison, Tunnicliffe, David J., Lopez-Vargas, Pamela, Mallett, Andrew, Patel, Chirag, Savige, Judy, Campbell, Manish, Patel, Manish, Tchan, Michel C., Alexander, Stephen I., Lee, Vincent, Craig, Jonathan C., Fassett, Robert and Rangan, Gopala K. (2016) Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease. Nephrology, 21 2: 122-132. doi:10.1111/nep.12579

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Author Tong, Allison
Tunnicliffe, David J.
Lopez-Vargas, Pamela
Mallett, Andrew
Patel, Chirag
Savige, Judy
Campbell, Manish
Patel, Manish
Tchan, Michel C.
Alexander, Stephen I.
Lee, Vincent
Craig, Jonathan C.
Fassett, Robert
Rangan, Gopala K.
Title Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease
Journal name Nephrology   Check publisher's open access policy
ISSN 1440-1797
Publication date 2016-02
Sub-type Article (original research)
DOI 10.1111/nep.12579
Open Access Status Not Open Access
Volume 21
Issue 2
Start page 122
End page 132
Total pages 11
Place of publication Richmond, VIC, Australia
Publisher Wiley-Blackwell Publishing
Collection year 2017
Language eng
Formatted 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, 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.
Keyword Autosomal-dominant polycystic kidney disease
Patient-centred care
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
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Created: Mon, 15 Feb 2016, 09:20:09 EST by Sandrine Ducrot on behalf of Learning and Research Services (UQ Library)