Quality of Life Research最新文献

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Use of a generic Paediatric Patient Reported Outcome Measure (P-PROM) in Routine hospital Outpatient Care for Kids (ROCK): A qualitative exploration of adolescent, caregiver and service provider perspectives (P-PROM ROCK Phase 1). 在儿童常规医院门诊护理(ROCK)中使用通用儿科患者报告结果测量(P-PROM):青少年,护理人员和服务提供者视角的定性探索(P-PROM ROCK第1期)。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-05-14 DOI: 10.1007/s11136-025-03990-3
Renee Jones, Kim Dalziel, Harriet Hiscock, Alexander van Heudsen, Nancy Devlin
{"title":"Use of a generic Paediatric Patient Reported Outcome Measure (P-PROM) in Routine hospital Outpatient Care for Kids (ROCK): A qualitative exploration of adolescent, caregiver and service provider perspectives (P-PROM ROCK Phase 1).","authors":"Renee Jones, Kim Dalziel, Harriet Hiscock, Alexander van Heudsen, Nancy Devlin","doi":"10.1007/s11136-025-03990-3","DOIUrl":"10.1007/s11136-025-03990-3","url":null,"abstract":"<p><strong>Purpose: </strong>To explore patient, caregiver, and service provider perspectives on the implementation of a generic Paediatric Patient Reported Outcome Measure (P-PROM), their perspectives on the EQ-5D-Y-5L, and to consider how these insights can be used to co-design routine use of EQ-5D-Y-5L in paediatric outpatient care.</p><p><strong>Methods: </strong>Individual semi-structured interviews were conducted with adolescent patients, caregivers, and providers (allied health, nurses, doctors) who had provided or received outpatient care at The Royal Children's Hospital, Australia. Interview transcripts were analysed using framework analysis and subsequent themes were mapped to an acceptability framework.</p><p><strong>Results: </strong>Interviews were conducted in June and July 2023 with six service providers, five caregivers and three adolescent patients. Despite service provider concerns that generic P-PROMs may be too broad; all were open to their use. Participants did not see value in patients simply completing a generic P-PROM; it was emphasised that such information needed to be used and responded to. Participants were largely supportive of using the EQ-5D-Y-5L in clinical care, although some were concerned about the short recall period and negative framing. Displaying EQ-5D-Y-5L responses by item was preferred by participants. These different perspectives were summarised into enablers and barriers of acceptability.</p><p><strong>Conclusions: </strong>Perspectives gathered from this study highlight that generic P-PROMs, such as EQ-5D-Y-5L, may have potential for use in paediatric outpatient care. However, to have a meaningful impact, careful consideration is needed regarding implementation. Results have informed co-design of the P-PROM ROCK Program.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2189-2204"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274235/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144064549","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Anchor questions to improve patient-reported outcome measure interpretability in patients undergoing knee or hip arthroplasty - a mixed-methods content validity, construct validity, and reliability study. 锚定问题提高接受膝关节或髋关节置换术患者报告的结果测量的可解释性——一项混合方法的内容效度、结构效度和信度研究。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-05-16 DOI: 10.1007/s11136-025-03987-y
Lasse K Harris, Trine S Larsen, Berend Terluin, Henrik H Lauridsen, Anders Troelsen, Lina H Ingelsrud
{"title":"Anchor questions to improve patient-reported outcome measure interpretability in patients undergoing knee or hip arthroplasty - a mixed-methods content validity, construct validity, and reliability study.","authors":"Lasse K Harris, Trine S Larsen, Berend Terluin, Henrik H Lauridsen, Anders Troelsen, Lina H Ingelsrud","doi":"10.1007/s11136-025-03987-y","DOIUrl":"10.1007/s11136-025-03987-y","url":null,"abstract":"<p><strong>Purpose: </strong>To explore content validity, construct validity, and reliability of anchor questions used to determine minimal important change (MIC), patient acceptable symptom state (PASS) and treatment failure (TF) in patients undergoing knee or hip arthroplasty.</p><p><strong>Methods: </strong>A mixed-methods study from one public hospital. Evaluation of content validity involved applying thematic analysis to data from think-aloud interviews. To ascertain construct validity and reliability, we focused on patients who underwent surgery between 2016 and 2022 and had responded to preoperative and either 3-, 12- or 24-month postoperative questionnaires. Confirmatory factor analysis (CFA) was employed to assess present state bias (PSB), model fit, and reliability of the anchor questions.</p><p><strong>Results: </strong>We conducted 18 interviews with patients aged 52 to 84 (10 female). Based on seven emerging themes from the content validity analysis, MIC and PASS anchor questions were considered relevant and comprehensible, while the TF anchor question had several problems. Data from 1197 to 2207 patients, with 3-, 12-, or 24-month postoperative responses, were used to evaluate construct validity. The median age was 69-70 years (56-59% female). PSB for MIC was between 54 and 73%, and reliability for the anchor questions was between 0.52 and 0.80 for all time points. The CFA models varied between good and poor fit.</p><p><strong>Conclusion: </strong>The MIC and PASS anchor questions demonstrated a high degree of content validity, while it was questionable for TF. Construct validity was considered good to poor for PASS, but patients may consider their present state more than their preoperative state when responding to the MIC. Reliability was considered acceptable in both MIC and PASS.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2279-2291"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274218/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144079788","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Adherence to daily electronic symptom screening in pediatric cancer: associations with time, location and pain. 儿童癌症坚持每日电子症状筛查:与时间、部位和疼痛的关系
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-06-10 DOI: 10.1007/s11136-025-04002-0
Jonas Dreher, Andreas Meryk, Johannes M Giesinger, Verena Schneeberger-Carta, David Riedl, Alexandra Haid, Gabriele Kropshofer, Benjamin Hetzer, Gerhard Rumpold, Bernhard Holzner, Roman Crazzolara, Jens Lehmann
{"title":"Adherence to daily electronic symptom screening in pediatric cancer: associations with time, location and pain.","authors":"Jonas Dreher, Andreas Meryk, Johannes M Giesinger, Verena Schneeberger-Carta, David Riedl, Alexandra Haid, Gabriele Kropshofer, Benjamin Hetzer, Gerhard Rumpold, Bernhard Holzner, Roman Crazzolara, Jens Lehmann","doi":"10.1007/s11136-025-04002-0","DOIUrl":"10.1007/s11136-025-04002-0","url":null,"abstract":"<p><strong>Purpose: </strong>Regularly collected patient-reported outcome measures (PROMs) can facilitate early symptom detection and improve health outcomes. This explorative analysis aimed to investigate PROM adherence and factors associated with daily PROM completion among pediatric cancer patients.</p><p><strong>Methods: </strong>We analyzed data from a prospective study at the Medical University of Innsbruck in which pediatric patients with cancer treated with chemotherapy completed daily PROMs via a web-based portal (ePROtect). We analyzed the PROM adherence during their first year of treatment descriptively and using a linear mixed model to evaluate factors associated with PROM adherence.</p><p><strong>Results: </strong>Fifty patients (42% female) with a median age of 10.7 years (IQR 7.1-15.4) were included in this analysis (analysis period 05/2020 to 05/2023). The mean adherence was 48.7% (SD 27.2), with the highest adherence during the first 30 days (77.1%). Significant predictive factors for lower adherence included time in the program (logarithmic; β = -0.093, p < 0.001) and admission to the intensive care unit (β = -0.224, p < 0.001). In contrast, inpatient stays (β = 0.035, p = 0.014) and self-reported pain (β = 0.087, p = 0.002) were significant predictors for higher PROM adherence. Occurrences of adverse events were not significantly associated with adherence.</p><p><strong>Discussion: </strong>Our findings suggest that continuous daily symptom monitoring is feasible over extended periods. PROM adherence stabilized over time despite an initial drop, with higher participation observed during inpatient stays and in weeks with self-reported pain. Future research should explore and evaluate strategies to improve adherence.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2363-2375"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274143/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144258863","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Frequency and severity response scales for pain and discomfort: psychometric insights from EQ-HWB. 疼痛和不适的频率和严重程度反应量表:EQ-HWB的心理测量见解。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-06-10 DOI: 10.1007/s11136-025-04003-z
Soumana C Nasser, A Simon Pickard, Jonathan L Nazari, Maja Kuharic
{"title":"Frequency and severity response scales for pain and discomfort: psychometric insights from EQ-HWB.","authors":"Soumana C Nasser, A Simon Pickard, Jonathan L Nazari, Maja Kuharic","doi":"10.1007/s11136-025-04003-z","DOIUrl":"10.1007/s11136-025-04003-z","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2259-2268"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274242/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144258864","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Associations between dyadic coping, mutuality, and quality of life among maintenance hemodialysis patients and caregivers: an actor-partner interdependence mediation model. 维持性血液透析患者和护理人员的二元应对、相互关系和生活质量之间的关联:一个行动者-伴侣相互依赖的中介模型。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-06-17 DOI: 10.1007/s11136-025-03991-2
Yan Liu, Zhenying Wei, Libao Jing, Zhun Sui, Pengcheng Fu, Xiurong Chen, Guiling Yu
{"title":"Associations between dyadic coping, mutuality, and quality of life among maintenance hemodialysis patients and caregivers: an actor-partner interdependence mediation model.","authors":"Yan Liu, Zhenying Wei, Libao Jing, Zhun Sui, Pengcheng Fu, Xiurong Chen, Guiling Yu","doi":"10.1007/s11136-025-03991-2","DOIUrl":"10.1007/s11136-025-03991-2","url":null,"abstract":"<p><strong>Purpose: </strong>Maintenance hemodialysis patients and their caregivers is experiencing poor quality of life. The dyadic illness management theory has linked dyadic coping and mutuality to quality of life. This study explored the effects of dyadic coping on mental/ physical quality of life and the mediating role of mutuality in these relationships among maintenance hemodialysis patients and their caregivers.</p><p><strong>Methods: </strong>A cross-sectional study was conducted with 302 patient-caregiver dyads recruited from four blood purification centers in Jinan, Qingdao, Yantai, and Zaozhuang, China, between May 2024 and November 2024. Data were collected using a sociodemographic characteristics questionnaire, the dyadic coping inventory, the mutuality scale, and the 12-item short-form health survey. Data analysis was performed using the actor-partner interdependence mediation model.</p><p><strong>Results: </strong>The findings revealed that in terms of actor effects, dyadic coping directly impacted mental and physical quality of life in maintenance hemodialysis patients and mental quality of life in caregivers (p < 0.01). The relationships were mediated through their own mutuality (p < 0.05). In terms of partner effects, caregivers' dyadic coping directly impacted maintenance hemodialysis patients' mental and physical quality of life (p < 0.05), with mutuality of both maintenance hemodialysis patients and their caregivers serving as a mediator (p < 0.05).</p><p><strong>Conclusion: </strong>The study confirms the significant dyadic relationships between dyadic coping, mutuality, and mental/ physical quality of life among maintenance hemodialysis patients and their caregivers. The findings suggest that it is essential to develop effective dyadic interventions based on dyadic coping strategies or mutuality to improve mental and physical quality of life for both members.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2393-2404"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144317791","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
How well do participants understand the questions asked in the Online Personal Utility Functions (OPUF) approach? A cognitive debrief of the EQ-HWB-S (EQ Health and Wellbeing Short version) valuation. 参与者对在线个人效用函数(OPUF)方法中所问问题的理解程度如何?对EQ- hwb - s(情商健康与幸福短版)评估进行认知汇报。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-05-17 DOI: 10.1007/s11136-025-03989-w
Tessa Peasgood, Nancy Devlin, Kristina Ludwig, Ole Marten, Emily McDool, Paul Schneider, Koonal Shah, Clara Mukuria
{"title":"How well do participants understand the questions asked in the Online Personal Utility Functions (OPUF) approach? A cognitive debrief of the EQ-HWB-S (EQ Health and Wellbeing Short version) valuation.","authors":"Tessa Peasgood, Nancy Devlin, Kristina Ludwig, Ole Marten, Emily McDool, Paul Schneider, Koonal Shah, Clara Mukuria","doi":"10.1007/s11136-025-03989-w","DOIUrl":"10.1007/s11136-025-03989-w","url":null,"abstract":"<p><strong>Purpose: </strong>Online elicitation of Personal Utility Functions (OPUF) is an innovative approach to valuing health states. OPUF uses a combination of ranking, swing-weighting, levels-rating and anchoring dead tasks. Little is known about how participants interpret and engage with OPUF tasks. This study aimed to address this gap.</p><p><strong>Method: </strong>Cognitive debrief interviews, which included 'think-aloud' and probing questions, were undertaken in the UK to understand how members of the public engage with OPUF when used to value the EQ-HWB-S (EQ Health and Wellbeing Short version). Coding drew upon a Framework approach, with final codes including an assessment of how participants engaged with each of the five OPUF tasks based on whether (1) they completed as expected, (2) minor concerns were identified or (3) major concerns were identified. The presence of major concerns was judged to undermine the validity of responses.</p><p><strong>Results: </strong>All 27 interviews were identified to have at least minor concern and 18 (67%) were identified as having major concerns. Major concerns were identified in four of the tasks: ranking (in 19% of interviews), swing-weighting (30%), levels-rating (56%), anchoring dead task (48%). Older participants were more likely to have major errors.</p><p><strong>Conclusion: </strong>Think-aloud and probing interviews with 27 participants completing the OPUF identified multiple concerns, to the extent that their data is unlikely to be a valid reflection of their preferences. The extent of concerns identified here suggests the need for interviewer led data collection within OPUF to ensure data quality.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2269-2278"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274140/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144086561","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Psychometric properties, and cultural appropriateness, of patient reported outcome measures for use in primary healthcare: a scoping review. 用于初级医疗保健的患者报告结果测量的心理计量特性和文化适宜性:范围综述。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-03-28 DOI: 10.1007/s11136-025-03956-5
Christopher M Doran, Jamie Bryant, Erika Langham, Roxanne Bainbridge, Anthony Shakeshaft, Breanne Hobden, Sara Farnbach, Megan Freund
{"title":"Psychometric properties, and cultural appropriateness, of patient reported outcome measures for use in primary healthcare: a scoping review.","authors":"Christopher M Doran, Jamie Bryant, Erika Langham, Roxanne Bainbridge, Anthony Shakeshaft, Breanne Hobden, Sara Farnbach, Megan Freund","doi":"10.1007/s11136-025-03956-5","DOIUrl":"10.1007/s11136-025-03956-5","url":null,"abstract":"<p><strong>Purpose: </strong>To critically appraise the psychometric properties and cultural appropriateness of self-reported generic patient-reported outcome measures (PROMs) applicable for use in the primary healthcare setting using the Consensus Based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines.</p><p><strong>Methods: </strong>PROMs were identified via a published systematic review and searches of relevant websites. PROMs were included if they were generic (i.e., outcome measures that assessed general aspects of health); had a maximum of 30 items; were applicable for use by all adult primary care patients; and were validated in English. Data was extracted regarding the characteristics of each PROM and the characteristics of included validation studies. The COSMIN risk of bias checklist was used to assess methodological quality and the revised COSMIN criteria was used to assess measurement properties. An evidence synthesis was conducted across studies using the guidelines from the modified Grading of Recommendations Assessment, Development and Evaluation approach for systematic reviews of clinical trials.</p><p><strong>Results: </strong>399 PROMs were identified and 19 met inclusion criteria. The included PROMs measured general health related quality of life (n = 8), outcomes or impact of care (n = 3), patient enablement, activation, and empowerment (n = 3), quality of care (n = 3), health and disability (n = 1), and functional status (n = 1). Six PROMs met the recommended COSMIN threshold for implementation.</p><p><strong>Conclusion: </strong>Although six PROMs can be recommended for use in primary care, further psychometric testing is still required to strengthen evidence related to internal consistency, responsiveness and cross-cultural validity/measurement invariance. Selection of a PROM for routine clinical use in primary care also needs to be guided by the patient population.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2137-2149"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274139/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143736101","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Factors influencing participation in home, school, and community settings by 6- to 9-year-old children born preterm: a qualitative descriptive study. 影响6- 9岁早产儿童参与家庭、学校和社区活动的因素:一项定性描述性研究。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-05-23 DOI: 10.1007/s11136-025-03993-0
Tiffany K Bradshaw, James T D Gibbons, Andrew C Wilson, Amber Bates, Shannon J Simpson, Jenny Downs
{"title":"Factors influencing participation in home, school, and community settings by 6- to 9-year-old children born preterm: a qualitative descriptive study.","authors":"Tiffany K Bradshaw, James T D Gibbons, Andrew C Wilson, Amber Bates, Shannon J Simpson, Jenny Downs","doi":"10.1007/s11136-025-03993-0","DOIUrl":"10.1007/s11136-025-03993-0","url":null,"abstract":"<p><strong>Purpose: </strong>There is no published information on preterm children's activities and participation during middle childhood, a time when growth and development are characterised by increasing motor, reasoning, self-regulation, social and executive functioning skills. This study explored the health, activities and participation of children born very preterm during middle childhood (6-9 years) from the perspectives of their parents.</p><p><strong>Methods: </strong>This was a qualitative descriptive design. Twenty parents of 27 very preterm children born < 32 weeks gestation participated in semi-structured interviews to explore their child's health, behaviour, functioning and participation in school, at home and in the community along with environment and personal factors that influenced the child's activities and participation. Interview data were coded to each of the International Classification of Functioning in Disability (ICF-CY) domains.</p><p><strong>Results: </strong>Parents reported a broad range of health needs and participation outcomes. Parents reported challenges related to respiratory health, mental health and behaviour, sleep, nutrition and feeding. The child's participation and functioning were influenced by both personal and environmental factors including but not limited to parenting styles, education and learning support, access to health support and personal preferences and motivations.</p><p><strong>Conclusion: </strong>Preterm birth is associated with impacts on the child's health, activities and participation. This comprehensive view on the child's health and wellbeing can aid clinicians in their management of these children.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2317-2328"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274236/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144128396","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 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). “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)。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-05-31 DOI: 10.1007/s11136-025-03996-x
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
{"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":"10.1007/s11136-025-03996-x","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":"2205-2218"},"PeriodicalIF":3.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12274246/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144192125","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Disutilities of treatment-related attributes for type 2 diabetes mellitus: a systematic review. 2型糖尿病治疗相关属性的缺点:一项系统综述。
IF 2.7 3区 医学
Quality of Life Research Pub Date : 2025-08-01 Epub Date: 2025-03-25 DOI: 10.1007/s11136-025-03945-8
Shitong Xie, Xinran Liu, Meixuan Li, Jing Wu
{"title":"Disutilities of treatment-related attributes for type 2 diabetes mellitus: a systematic review.","authors":"Shitong Xie, Xinran Liu, Meixuan Li, Jing Wu","doi":"10.1007/s11136-025-03945-8","DOIUrl":"10.1007/s11136-025-03945-8","url":null,"abstract":"<p><strong>Objectives: </strong>To synthesize the literature on eliciting disutilities associated with treatment-related attributes in type 2 diabetes (T2DM).</p><p><strong>Methods: </strong>We searched Medline, Embase, Cochrane Library, PsycINFO, EconLit and CINAHL databases from inception to December, 2024. This systematic review followed PRISMA guidelines, quality and risk of bias of the included studies were assessed using the NICE and ROBINS-I checklist.</p><p><strong>Results: </strong>Nine studies involving 59 to 4060 participants were included and most studies (n=6) were conducted in the UK. The perspective of preference included T2DM patients (n=7) and the general public (n=3), with one study included both. Elicitation approaches used were time trade-off (n=5) and standard gamble (n=4). Eight treatment-related attributes were identified, including weight change (n=5), dosing frequency (n=4), gastrointestinal side effects (n=2), flexible dosing (n=2), administration requirement (i.e., reconstitution, waiting, and needle handling) (n=2), injection site reaction (n=1), fear of hypoglycemia (n=1), and HbA1c levels (n=1). For the attribute of weight change, the (dis)utility value ranged from -0.106 to 0.047. Respondents showed a preference for weekly over daily administration (range: 0.023 to 0.095), once-daily over multiple-daily (range: 0.015 to 0.123). The (dis)utility values for the rest of six attributes ranged from -0.04 to 0.034.</p><p><strong>Conclusions: </strong>This review provides evidence synthesize of published disutilities related to T2DM treatment-related attributes which have a nonnegligible effect. Weight change and dosing frequency were the most reported with the largest impact. Given the considerable heterogeneity in current studies, care should be taken in selecting appropriate estimates between different elicitation methods, populations and countries.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2151-2161"},"PeriodicalIF":2.7,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143710480","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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