Gutman Talia, Lopez-Vargas Pamela, Manera Karine E, Craig Jonathan C, Howell Martin, Tunnicliffe David, James Laura J, MacGinley Rob, See Emily, Wong Jeffrey, Voss David, Saunders John, Menahem Solomon, Jesudason Shilpanjali, Tong Allison, Champion de Crespigny Paul
Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
Nephrology (Carlton). 2019 Apr;24(4):395-404. doi: 10.1111/nep.13406.
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.
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.
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.
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.
经皮肾活检对于为疑似肾病患者提供可靠的诊断和预后信息通常至关重要，然而该操作可能会引发并发症并使患者产生担忧。本研究旨在识别患者的优先事项和观点，并将其纳入澳大利亚肾脏健康组织——关爱澳大利亚肾损伤患者的肾活检临床实践指南中，以确保指南与患者相关。
我们举办了一个研讨会，包括三个同步进行的焦点小组和一次全体会议，有10名接受过肾活检的患者和7名护理人员参加。将患者及其护理人员优先考虑的主题和结果与由7名肾病学家组成的指南工作组确定的主题和结果进行比较。对会议记录和活动挂图进行主题分析，以确定参与者做出选择的原因。
总共确定了34个主题/结果，其中14个与指南工作组之前确定的28个主题列表相同。患者/护理人员确定的大多数新主题与沟通和教育、心理社会支持及自我管理有关。我们确定了支撑主题和结果选择原因的五个主题：减轻焦虑和不必要的痛苦、将不适和干扰降至最低、支持家人和护理人员、实现自我管理以及保护他们的肾脏。因此，指南中新增了一个关于患者护理和教育的主题。
患者和护理人员参与肾活检指南的制定，确保了他们对教育、心理社会支持和自我管理的担忧和需求得到明确解决；从而实现了以患者为中心的肾活检方法。
