Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones
Tunnicliffe, David J., Wickham, Ieuan, Jauré, Allison, Johnston, Brydee, Mallett, Andrew J., Mullan, Adam, Lloyd, Lyn, Scholes-Roberston, Nicole, Hassan, Hicham Cheikh, and Jose, Matthew (2025) Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones. BMC Nephrology, 26 (1). 292.
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Abstract
Aim: 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. Methods: 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. Results: 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). Conclusions: 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.
| Item ID: | 87752 |
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| Item Type: | Article (Research - C1) |
| ISSN: | 1471-2369 |
| Keywords: | Clinical practice guidelines, Consumer involvement, Kidney stones, Nephrolithiasis, Nutrition, Patient-centred care |
| Copyright Information: | © The Author(s) 2025, corrected publication 2025. This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. |
| Date Deposited: | 12 Feb 2026 06:21 |
| FoR Codes: | 32 BIOMEDICAL AND CLINICAL SCIENCES > 3202 Clinical sciences > 320214 Nephrology and urology @ 100% |
| SEO Codes: | 20 HEALTH > 2001 Clinical health > 200105 Treatment of human diseases and conditions @ 100% |
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