{"title":"“如果我们要求,我们必须采取行动”:共同设计实施EQ-5D-Y-5L作为儿童常规医院门诊护理儿科患者报告的结果衡量标准,以有意义地影响临床就诊(P-PROM ROCK第2期)。","authors":"Renee Jones, Kim Dalziel, Harriet Hiscock, Karen McLean, Diana Truong, Andrew Tuan Phuong Dao, Kathe Holmes, Kath Feely, Jessica Taranto, Abby Palmer, Tanya Wolfe, Penny Richards Fowler, Kirsten Pini, Max Pini, Einat Martonovich-Lantsberg, Joanna Lawrence, Misel Trajanovska, Adele Berry, Valerie Sung, Sebastian King, Nancy Devlin","doi":"10.1007/s11136-025-03996-x","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>To co-design use of the EQ-5D-Y-5L, a generic Paediatric Patient Reported Outcome Measure (P-PROM), in Routine Outpatient Care for Kids (ROCK), maximising its impact on patient-clinician visits.</p><p><strong>Methods: </strong>This Phase 2 co-design study was guided by the co-design framework for public service design and Double Diamond model. Data collection involved facilitated workshops (building on Phase 1), followed by feedback and optimisation sessions. Participants included service providers (doctors, nurses, allied health and medical record staff), adolescents, and caregivers with lived experience of providing or receiving outpatient care at a tertiary paediatric hospital in Australia.</p><p><strong>Results: </strong>Five co-design workshops, nine feedback, and two optimisation sessions were conducted with nine service providers, two adolescents, and three caregivers. Co-design participants created resources to introduce EQ-5D-Y-5L as a 'general health tracking questionnaire' and explain its purpose. EQ-5D-Y-5L responses were designed to be displayed by item. A display of results over time was also designed. A patient empowerment approach was taken with regards to flagging specific EQ-5D-Y-5L items for discussion with clinicians, whereby patients or caregivers control which items are flagged. To ensure clinical review and action of EQ-5D-Y-5L responses, resources, including clinician training, clinician decision support tool, and matching patient booklet and resource pathway, were co-designed. Combined, these design elements make up the P-PROM ROCK Program.</p><p><strong>Conclusion: </strong>Consumer engagement produced important insights that would've otherwise been missed, ensuring the P-PROM ROCK Program empowers patients. For generic P-PROMs to meaningfully impact patient-clinician visits, supports and resources are required to ensure clinical review and action.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3000,"publicationDate":"2025-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"\\\"If we ask, we must act\\\": co-designing the implementation of the EQ-5D-Y-5L as a Paediatric Patient Reported Outcome Measure in Routine hospital Outpatient Care for Kids to meaningfully impact clinical visits (P-PROM ROCK Phase 2).\",\"authors\":\"Renee Jones, Kim Dalziel, Harriet Hiscock, Karen McLean, Diana Truong, Andrew Tuan Phuong Dao, Kathe Holmes, Kath Feely, Jessica Taranto, Abby Palmer, Tanya Wolfe, Penny Richards Fowler, Kirsten Pini, Max Pini, Einat Martonovich-Lantsberg, Joanna Lawrence, Misel Trajanovska, Adele Berry, Valerie Sung, Sebastian King, Nancy Devlin\",\"doi\":\"10.1007/s11136-025-03996-x\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>To co-design use of the EQ-5D-Y-5L, a generic Paediatric Patient Reported Outcome Measure (P-PROM), in Routine Outpatient Care for Kids (ROCK), maximising its impact on patient-clinician visits.</p><p><strong>Methods: </strong>This Phase 2 co-design study was guided by the co-design framework for public service design and Double Diamond model. Data collection involved facilitated workshops (building on Phase 1), followed by feedback and optimisation sessions. Participants included service providers (doctors, nurses, allied health and medical record staff), adolescents, and caregivers with lived experience of providing or receiving outpatient care at a tertiary paediatric hospital in Australia.</p><p><strong>Results: </strong>Five co-design workshops, nine feedback, and two optimisation sessions were conducted with nine service providers, two adolescents, and three caregivers. Co-design participants created resources to introduce EQ-5D-Y-5L as a 'general health tracking questionnaire' and explain its purpose. EQ-5D-Y-5L responses were designed to be displayed by item. A display of results over time was also designed. A patient empowerment approach was taken with regards to flagging specific EQ-5D-Y-5L items for discussion with clinicians, whereby patients or caregivers control which items are flagged. To ensure clinical review and action of EQ-5D-Y-5L responses, resources, including clinician training, clinician decision support tool, and matching patient booklet and resource pathway, were co-designed. Combined, these design elements make up the P-PROM ROCK Program.</p><p><strong>Conclusion: </strong>Consumer engagement produced important insights that would've otherwise been missed, ensuring the P-PROM ROCK Program empowers patients. For generic P-PROMs to meaningfully impact patient-clinician visits, supports and resources are required to ensure clinical review and action.</p>\",\"PeriodicalId\":20748,\"journal\":{\"name\":\"Quality of Life Research\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":3.3000,\"publicationDate\":\"2025-05-31\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Quality of Life Research\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s11136-025-03996-x\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Quality of Life Research","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s11136-025-03996-x","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
"If we ask, we must act": co-designing the implementation of the EQ-5D-Y-5L as a Paediatric Patient Reported Outcome Measure in Routine hospital Outpatient Care for Kids to meaningfully impact clinical visits (P-PROM ROCK Phase 2).
Purpose: To co-design use of the EQ-5D-Y-5L, a generic Paediatric Patient Reported Outcome Measure (P-PROM), in Routine Outpatient Care for Kids (ROCK), maximising its impact on patient-clinician visits.
Methods: This Phase 2 co-design study was guided by the co-design framework for public service design and Double Diamond model. Data collection involved facilitated workshops (building on Phase 1), followed by feedback and optimisation sessions. Participants included service providers (doctors, nurses, allied health and medical record staff), adolescents, and caregivers with lived experience of providing or receiving outpatient care at a tertiary paediatric hospital in Australia.
Results: Five co-design workshops, nine feedback, and two optimisation sessions were conducted with nine service providers, two adolescents, and three caregivers. Co-design participants created resources to introduce EQ-5D-Y-5L as a 'general health tracking questionnaire' and explain its purpose. EQ-5D-Y-5L responses were designed to be displayed by item. A display of results over time was also designed. A patient empowerment approach was taken with regards to flagging specific EQ-5D-Y-5L items for discussion with clinicians, whereby patients or caregivers control which items are flagged. To ensure clinical review and action of EQ-5D-Y-5L responses, resources, including clinician training, clinician decision support tool, and matching patient booklet and resource pathway, were co-designed. Combined, these design elements make up the P-PROM ROCK Program.
Conclusion: Consumer engagement produced important insights that would've otherwise been missed, ensuring the P-PROM ROCK Program empowers patients. For generic P-PROMs to meaningfully impact patient-clinician visits, supports and resources are required to ensure clinical review and action.
期刊介绍:
Quality of Life Research is an international, multidisciplinary journal devoted to the rapid communication of original research, theoretical articles and methodological reports related to the field of quality of life, in all the health sciences. The journal also offers editorials, literature, book and software reviews, correspondence and abstracts of conferences.
Quality of life has become a prominent issue in biometry, philosophy, social science, clinical medicine, health services and outcomes research. The journal''s scope reflects the wide application of quality of life assessment and research in the biological and social sciences. All original work is subject to peer review for originality, scientific quality and relevance to a broad readership.
This is an official journal of the International Society of Quality of Life Research.