Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones
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 k...
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BMC
2025-07-01
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| Series: | BMC Nephrology |
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| Online Access: | https://doi.org/10.1186/s12882-025-04160-w |
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| author | David J. Tunnicliffe Ieuan Wickham Allison Jauré Brydee Johnston Andrew J. Mallett Adam Mullan Lyn Lloyd Nicole Scholes-Roberston Hicham Cheikh Hassan Matthew Jose on behalf of the Caring for Australian and New ZealandeRs with Kidney Impairment (CARI) Guidelines Steering Committee |
| author_facet | David J. Tunnicliffe Ieuan Wickham Allison Jauré Brydee Johnston Andrew J. Mallett Adam Mullan Lyn Lloyd Nicole Scholes-Roberston Hicham Cheikh Hassan Matthew Jose on behalf of the Caring for Australian and New ZealandeRs with Kidney Impairment (CARI) Guidelines Steering Committee |
| author_sort | David J. Tunnicliffe |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-68a1c99f024e4e01b7bd8146453fc797 |
| institution | Kabale University |
| issn | 1471-2369 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Nephrology |
| spelling | doaj-art-68a1c99f024e4e01b7bd8146453fc7972025-08-20T03:42:20ZengBMCBMC Nephrology1471-23692025-07-0126111210.1186/s12882-025-04160-wIdentifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stonesDavid J. Tunnicliffe0Ieuan Wickham1Allison Jauré2Brydee Johnston3Andrew J. Mallett4Adam Mullan5Lyn Lloyd6Nicole Scholes-Roberston7Hicham Cheikh Hassan8Matthew Jose9on behalf of the Caring for Australian and New ZealandeRs with Kidney Impairment (CARI) Guidelines Steering Committee10Sydney School of Public Health, The University of SydneyCentre for Kidney Research, The Children’s Hospital at WestmeadSydney School of Public Health, The University of SydneySydney School of Public Health, The University of SydneyDepartment of Renal Medicine, Townsville University HospitalNorthland Renal Services, Te Tai TokerauNutrition and Dietitics, Auckland HealthSydney School of Public Health, The University of SydneyGraduate School of Medicine, University of WollongongSchool of Medicine, University of TasmaniaSydney School of Public Health, The University of SydneyAbstract 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.https://doi.org/10.1186/s12882-025-04160-wKidney stonesNephrolithiasisConsumer involvementClinical practice guidelinesPatient-centred careNutrition |
| spellingShingle | David J. Tunnicliffe Ieuan Wickham Allison Jauré Brydee Johnston Andrew J. Mallett Adam Mullan Lyn Lloyd Nicole Scholes-Roberston Hicham Cheikh Hassan Matthew Jose on behalf of the Caring for Australian and New ZealandeRs with Kidney Impairment (CARI) Guidelines Steering Committee Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones BMC Nephrology Kidney stones Nephrolithiasis Consumer involvement Clinical practice guidelines Patient-centred care Nutrition |
| title | Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones |
| title_full | Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones |
| title_fullStr | Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones |
| title_full_unstemmed | Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones |
| title_short | Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones |
| title_sort | identifying and integrating consumer prioritised topics and outcomes in clinical practice guidelines on managing kidney stones |
| topic | Kidney stones Nephrolithiasis Consumer involvement Clinical practice guidelines Patient-centred care Nutrition |
| url | https://doi.org/10.1186/s12882-025-04160-w |
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