IDENTIFYING AND INTEGRATING PATIENT AND CAREGIVER PERSPECTIVES IN CLINICAL PRACTICE GUIDELINES FOR PERCUTANEOUS RENAL BIOPSY

T GUTMAN^1,2, P LOPEZ-VARGAS², K MANERA^1,2, J CRAIG^1,2, M HOWELL^1,2, D TUNNICLIFFE², L JAMES^1,2, R MACGINLEY³, E SEE⁴, J WONG⁵, D VOSS⁶, J SAUNDERS⁷, SOLOMON MENAHEM⁸, SHILPANJALI JESUDASON⁹, ALLISON TONG^1,2, PAUL CHAMPION DE CRESPIGNY^10
1School of Public Health, The University of Sydney, Sydney, Australia, ²Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia, ³Eastern Health Clinical School, Monash University, Melbourne, Australia, ⁴Department of Nephrology, Monash Health, Melbourne, Australia, ⁵Department of Nephrology, Liverpool Hospital, Sydney, Australia, ⁶Department of Renal Medicine, Counties Manukau Health, Aukland, New Zealand, ⁷Renal Unit, Royal Prince Alfred Hospital, Sydney, Australia, ⁸Department of Epidemiology and Preventative Medicine, Monash University, Melbourne, Australia, ⁹Central and Northern Adelaide Renal and Transplantation Service and Department of Medicine, University of Adelaide, Royal Adelaide Hospital, Adelaide, Australia, ¹⁰Department of Nephrology, The Royal Melbourne Hospital, Melbourne, Australia

Aims: This study aims to identify and integrate patient priorities and perspectives into the Kidney Health Australia – Caring for Australasians with Renal Impairment clinical practice guidelines for renal biopsy, to ensure patient-relevance.
Background: Percutaneous renal biopsy is often essential for providing reliable diagnostic and prognostic information for people with suspected kidney disease, however the procedure can lead to complications and concerns among patients.
Methods: We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with ten patients who had undergone a renal biopsy and seven caregivers. Topics and outcomes prioritised by patients and their caregivers were compared to those identified by the guideline working group, which was comprised of seven nephrologists. Transcripts and flipcharts were analysed thematically to identify the reasons for participants’ choices.
Results: In total, 34 topics/outcomes were identified, 14 of which were common to the list of 28 previously identified by the guideline working group. Most of the new topics identified by patients/caregivers were related to communication and education, psychosocial support, and self-management. We identified five themes underpinning the reasons for topic and outcome selection: alleviating anxiety and unnecessary distress, minimising discomfort and disruption, supporting family and caregivers, enabling self-management, and protecting their kidney. A new topic on patient care and education was added to the guideline as a result.
Conclusions: Patient and caregiver involvement in developing guidelines on renal biopsy ensured that their concerns and needs for education, psychosocial support, and self-management were explicitly addressed; enabling a patient-centred approach to renal biopsies.

Biography:
Talia Gutman is a Research Officer and PhD candidate at the Sydney School of Public Health, The University of Sydney, Australia. Her primary research interest is in the area of patient and caregiver involvement in research in chronic kidney disease. She has conducted international qualitative studies on patient involvement in research in chronic kidney disease and has experience in interviews, focus groups, nominal group technique, and survey research to elicit stakeholder perspectives with the goal of informing patient-centred programs and interventions.