T GUTMAN1,2, P LOPEZ-VARGAS2, K MANERA1,2, J CRAIG1,2, M HOWELL1,2, D TUNNICLIFFE2, L JAMES1,2, R MACGINLEY3, E SEE4, J WONG5, D VOSS6, J SAUNDERS7, SOLOMON MENAHEM8, SHILPANJALI JESUDASON9, ALLISON TONG1,2, PAUL CHAMPION DE CRESPIGNY10
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.
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.