Please use this identifier to cite or link to this item: http://hdl.handle.net/2440/118759
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Type: Journal article
Title: Identifying and integrating patient and caregiver perspectives in clinical practice guidelines for percutaneous renal biopsy
Author: Gutman, T.
Lopez-Vargas, P.
Manera, K.
Craig, J.
Howell, M.
Tunnicliffe, D.
James, L.
MacGinley, R.
See, E.
Wong, J.
Voss, D.
Saunders, J.
Menahem, S.
Jesudason, S.
Tong, A.
Champion de Crespigny, P.
Citation: Nephrology, 2019; 24(4):395-404
Publisher: Wiley
Issue Date: 2019
ISSN: 1320-5358
1440-1797
Statement of
Responsibility: 
Talia Gutman, Pamela Lopez‐Vargas, Karine E Manera, Jonathan C Craig, Martin Howell, David Tunnicliffe ... Shilpanjali Jesudason ... et al.
Abstract: AIM: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. 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. METHODS:We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with 10 patients who had undergone a renal biopsy and seven caregivers. Topics and outcomes prioritized 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 analyzed 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, minimizing 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.
Keywords: Biopsy; caregivers; guideline; kidney; patients
Rights: © 2018 Asian Pacific Society of Nephrology
RMID: 0030094698
DOI: 10.1111/nep.13406
Grant ID: http://purl.org/au-research/grants/nhmrc/1106716
http://purl.org/au-research/grants/nhmrc/1092957
http://purl.org/au-research/grants/nhmrc/1151343
Appears in Collections:Medicine publications

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