IDENTIFYING AND INTEGRATING CONSUMER PERSPECTIVES IN CLINICAL PRACTICE GUIDELINES ON THE MANAGEMENT OF KIDNEY STONES
ADELA YIP1,2, BRYDEE CASHMORE1,2, ADAM MULLAN3,4, ALEX CURRIE5, CHANDANA GUHA1,2, HICHAM C HASSAN6,7, IEUAN WICKHAM5, LYN LLOYD8, MARTIN HOWELL1,2, MATTHEW JOSE9,10, NICOLE SCHOLES-ROBERTSON11,2, JONATHAN C CRAIG11,2,1, ALLISON JAURÉ1,2, DAVID J TUNNICLIFFE1,2
1Sydney School of Public Health, The University of Sydney, Sydney, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia
3Northland District Health Board, Northland, New Zealand
4University of Auckland, Auckland, New Zealand
5Consumer Partner, Auckland, New Zealand
6Department of Nephrology, Wollongong Hospital, Wollongong, Australia
7University of Wollongong, Wollongong, Australia
8Nutrition and Dietetics, Te Toka Tumai Auckland, Te Whatu Ora Health New Zealand
9School of Medicine, University of Tasmania, Hobart, Australia
10Department of Nephrology, Royal Hobart Hospital, Hobart, Australia
11College of Medicine and Public Health, Flinders University, Adelaide, Australia
Abstract
Aim:
To identify and integrate consumer-prioritised topics and outcomes in the Caring for Australians and New ZealandeRs with Kidney Impairment (CARI) guidelines on kidney stones management.
Background:
Actively involving consumers in guideline development can ensure the inclusion of priority topics and recommendations that are relevant and meaningful to patients, to inform decision-making. However, the process and impact of involving consumers in the guideline lifecycle remains under-reported.
Methods:
Two workshops (with concurrent focus groups) were convened in Aotearoa New Zealand, in Auckland and Whangārei, with 28 adult patients who had recurring kidney stones experiences. Participants identified and discussed topics and outcomes for inclusion in the guidelines. Flipcharts and transcripts were analysed thematically and compared to those identified by the Guideline Work Group.
Results:
Consumers identified seven novel priority topics: improved pain management; the role of traditional and complementary medicines; collaborative patient-clinician decision-making regarding treatment options and their associated risk-benefit; strengthening education for both patients and healthcare providers; establishing comprehensive models care with enhanced referral pathways and effective clinical support and technical systems. Priority outcomes included: knowledge gain, improved self-management, quality of life, psychosocial support and financial impact considerations. Five key themes underpinning participants’ priorities were: minimising debilitating pain through improved treatment pathways; avoiding frustrations caused by unnecessary delays; clarifying ambiguities and inconsistencies in care; empowering patients to self-manage; supporting whole-person care and enhancing life participation.
Conclusions:
Patients with kidney stones raised topics and issues not identified by the Guideline Work Group, focusing on symptom management, education, self-empowerment, access to care. Evidently, involving consumers and integrating their perspectives positively impacts guideline development, improving their relevance. Ultimately, enhancing quality of care, patient health outcomes and experiences.
Biography
Adela is an exercise scientist and dietitian who strongly believes in the importance of holistic, preventative health approaches to empower individuals to achieve their own versions of optimal health and wellbeing. Through applying her healthcare expertise within public health research, she wants to contribute to alleviating the disproportionate burden of disease faced by individuals and communities from culturally diverse backgrounds, as well as those in regional and remote areas. In her current work with the CARI Guidelines (Caring for Australians and new zealandeRs with kidney Impairment), she is contributing to the development of novel, best-practice guidelines across renal and related-diseases.