Tunnicliffe David J, Wickham Ieuan, Jauré Allison, Johnston Brydee, Mallett Andrew J, Mullan Adam, Lloyd Lyn, Scholes-Roberston Nicole, Hassan Hicham Cheikh, Jose Matthew
Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
BMC Nephrol. 2025 Jul 1;26(1):292. doi: 10.1186/s12882-025-04160-w.
The prevention and management of recurrent kidney stones can be challenging and requires patients to modify their diet and daily rountines that impact their quality of life. Our study aims to describe the process of integrating consumer-prioritised topics and outcomes in guidelines on kidney stones to ensure patient relevance.
Two workshops were convened in Aotearoa New Zealand with people with kidney stones invited to identify topics and outcomes for inclusion in the guidelines. Flipcharts and transcripts were analysed thematically to identify the reasons for participants' choices.
The topics identified by the twenty-eight participants included education on nutrition, better diagnosis, and individualised nutritional and pharmacological management. Pain, equity of access, anxiety about recurrence, and life participation were identified as important outcomes to be included. Four themes (and subthemes) underpinning priorities were: unresolvable debilitating pain (complexity of exctruciating acute episodic pain, inadequacy of pain relief medication, frustrated by stigma associated with opioids), dissatisfied at delayed access to care (prolonged difficulties in diagnosis, struggling to obtain individualised care), inadequate knowledge to enable self-management (insufficient information on kidney stones, conflicting nutrition advice, cultural deficit), and limiting life participation (restricting life choices, psychological burden of kidney stones).
Participants identified topics that would support symptom management to improve quality of life and reduce the burden on families. Guidelines should provide essential, consistent and clear guidance, particularly on nutrition, to support self-management. Incoporating consumer priorities in guidelines can help to support decision-making and patient-centred care in kidney stones.
复发性肾结石的预防和管理具有挑战性，需要患者改变影响其生活质量的饮食和日常习惯。我们的研究旨在描述将消费者优先考虑的主题和结果纳入肾结石指南的过程，以确保与患者相关。
在新西兰奥特亚罗瓦召开了两次研讨会，邀请肾结石患者确定纳入指南的主题和结果。对活动挂图和文字记录进行主题分析，以确定参与者选择的原因。
28名参与者确定的主题包括营养教育、更好的诊断以及个性化的营养和药物管理。疼痛、获得治疗的公平性、对复发的焦虑以及生活参与被确定为重要的纳入结果。支撑优先事项的四个主题（及子主题）为：无法解决的使人衰弱的疼痛（剧烈急性发作性疼痛的复杂性、止痛药物不足、因与阿片类药物相关的污名而感到沮丧）、对获得治疗延迟不满意（诊断长期困难、难以获得个性化治疗）、缺乏自我管理的知识（关于肾结石的信息不足、相互矛盾的营养建议、文化缺陷）以及限制生活参与（限制生活选择、肾结石的心理负担）。
参与者确定了有助于症状管理以提高生活质量和减轻家庭负担的主题。指南应提供基本、一致且明确的指导，尤其是在营养方面，以支持自我管理。将消费者优先事项纳入指南有助于支持肾结石治疗中的决策制定和以患者为中心的护理。
