CARI GUIDELINES FRAMEWORK FOR INCLUDING PEOPLE WITH LIVED EXPERIENCE OF KIDNEY DISEASE IN DEVELOPING CLINICAL PRACTICE GUIDELINES

CARI GUIDELINES FRAMEWORK FOR INCLUDING PEOPLE WITH LIVED EXPERIENCE OF KIDNEY DISEASE IN DEVELOPING CLINICAL PRACTICE GUIDELINES

Ieyesha Roberts^1,2, Dr Nicole Scholes-Robertson^1,2, Chandana Guha^1,2, Dr Talia Gutman^1,2, A/Prof Martin Howell^1,2, Brydee Cashmore^1,2, Dr Pamela Lopez-Vargas³, Prof Germaine Wong^1,2, Dr Robert MacGinley⁴, Dr Anneliese Synnot^5,6, Prof Jonathan Craig⁷, Prof Allison Jauré^1,2, A/Prof Rathika Krishnasamy^8,9, Dr David Tunnicliffe^1,2

¹Sydney School of Public Health, The University Of Sydney, Sydney, Australia, ²Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia, ³Child Protection Unit, The Sydney Children’s Hospitals Network, Westmead, Australia, ⁴Eastern Health Clinical School, Monash University, Melbourne, Australia, ⁵School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia, ⁶Centre for Health Communication and Participation, Department of Public Health, La Trobe University, Melbourne, Australia, ⁷College of Medicine and Public Health, Flinders University, Adelaide, Australia, ⁸Centre for Kidney Disease Research, The University of Queensland, Brisbane, Australia, ⁹Department of Nephrology, Sunshine Coast University Hospital, Birtinya, Australia

Introduction: The involvement of consumers (people with lived experience of disease) in guidelines is widely advocated to improve their relevance and uptake. However, the approaches to consumer involvement in guidelines vary and are not well documented. We describe the consumer involvement framework of Caring for Australians and New ZealandeRs with kidney Impairment (CARI) Guidelines.

Methods: We used a descriptive document analysis to collate all relevant policies, documents, emails, and presentations on consumer involvement in our organisations. We performed a narrative synthesis of collated data to summarise our evolving consumer involvement approach in guidelines.

Results: We involve consumers at all levels of CARI guideline development and dissemination according to their capacity, from conducting consumer workshops to inform the scope of guidelines, to including consumers as members of the guideline Working Groups and overseeing operations and governance as members of the Steering Committee and staff. Our approach has resulted in tangible outcomes including high-priority topics on patient education, psychosocial care, and clinical care pathways, and focusing the literature reviews to assess patient-important outcomes. The ongoing partnership with consumers led to the generation of consumer version guidelines to improve guideline dissemination and translation to support shared decision-making.

Conclusions: Meaningful consumer involvement can be achieved through a comprehensive approach across the entire lifecycle of guidelines. However, it must be individualised by ensuring that the involvement of consumers is timely and flexible. Future work is needed to assess the impact of consumer involvement in guideline development.

Biography:

Ieyesha Roberts is a Dunghutti woman living with chronic kidney disease. She was diagnosed with ANCA Vasculitis at 12 years of age, she has undergone peritoneal dialysis and also hemodialysis and received a transplant in 2013 which was removed in 2018. She is currently receiving home haemodialysis. Ieyesha is a staff member for CARI Guidelines and actively involved in guideline Working Groups and organising the active involvement of consumers in guideline development.