{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,12]],"date-time":"2026-05-12T11:52:22Z","timestamp":1778586742956,"version":"3.51.4"},"reference-count":42,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2016,1,21]],"date-time":"2016-01-21T00:00:00Z","timestamp":1453334400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Nephrology"],"published-print":{"date-parts":[[2016,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>This study aimed to identify consumer perspectives on topics and outcomes to integrate in the <jats:styled-content style=\"fixed-case\">K<\/jats:styled-content>idney <jats:styled-content style=\"fixed-case\">H<\/jats:styled-content>ealth <jats:styled-content style=\"fixed-case\">A<\/jats:styled-content>ustralia <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>aring for <jats:styled-content style=\"fixed-case\">A<\/jats:styled-content>ustralasians with <jats:styled-content style=\"fixed-case\">R<\/jats:styled-content>enal <jats:styled-content style=\"fixed-case\">I<\/jats:styled-content>mpairment (<jats:styled-content style=\"fixed-case\">KHA\u2010CARI<\/jats:styled-content>) clinical practice guidelines on autosomal\u2010dominant polycystic kidney disease (<jats:styled-content style=\"fixed-case\">ADPKD<\/jats:styled-content>).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A workshop involving three concurrent focus groups with 18 consumers (patients with <jats:styled-content style=\"fixed-case\">ADPKD<\/jats:styled-content> (<jats:italic>n<\/jats:italic>\u2009=\u200915), caregivers (<jats:italic>n<\/jats:italic>\u2009=\u20093)) 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010two priority topics were identified, with most focussed on non\u2010pharmacological 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 (<jats:styled-content style=\"fixed-case\">QoL<\/jats:styled-content>), 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of <jats:styled-content style=\"fixed-case\">ADPKD<\/jats:styled-content>, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and <jats:styled-content style=\"fixed-case\">QoL<\/jats:styled-content> and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient\u2010centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.<\/jats:p><\/jats:sec>","DOI":"10.1111\/nep.12579","type":"journal-article","created":{"date-parts":[[2015,7,31]],"date-time":"2015-07-31T08:59:50Z","timestamp":1438333190000},"page":"122-132","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":39,"title":["Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal\u2010dominant polycystic kidney disease"],"prefix":"10.1111","volume":"21","author":[{"given":"Allison","family":"Tong","sequence":"first","affiliation":[{"name":"Sydney School of Public Health The University of Sydney  Sydney NSW Australia"},{"name":"Centre for Kidney Research The Children's Hospital at Westmead  Westmead NSW 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