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Does the relationship between stress and quality of life differ among informal caregivers of older adults with Alzheimer's disease and children with autism spectrum disorder? Results from a cross-sectional survey. 在老年阿尔茨海默病患者和自闭症谱系障碍儿童的非正式照顾者中,压力和生活质量之间的关系是否不同?横断面调查结果。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-16 DOI: 10.1186/s41687-025-00953-7
Nilesh Gangan, Meagan Rosenthal, Arman Arabshomali, Erin Holmes, Benjamin F Banahan, Ruchit Shah, John P Bentley
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引用次数: 0
Psychometric validation of the PROMIS Fatigue-Short Form 7a in adults with newly diagnosed or recurrent Mycobacterium avium complex (MAC) lung disease: the ARISE and ENCORE studies. 新诊断或复发禽分枝杆菌复合体(MAC)肺部疾病的成人PROMIS疲劳短表7a的心理测量学验证:ARISE和ENCORE研究
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-16 DOI: 10.1186/s41687-025-00944-8
Kevin C Mange, Daniel Serrano, Mariam Hassan, Marie-Laure Nevoret, Dayton W Yuen, Shauna McManus, Lauren Podger, Bryant Barnes, Charles L Daley
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引用次数: 0
Psychometric properties of palliative care outcome measures: a multi-centre study. 姑息治疗结果测量的心理测量特性:一项多中心研究。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-16 DOI: 10.1186/s41687-025-00954-6
Animut Alebel Ayalew, Sabina Clapham, Katherine Clark, Farina Hodiamont, Lisa Redwood, David Currow
{"title":"Psychometric properties of palliative care outcome measures: a multi-centre study.","authors":"Animut Alebel Ayalew, Sabina Clapham, Katherine Clark, Farina Hodiamont, Lisa Redwood, David Currow","doi":"10.1186/s41687-025-00954-6","DOIUrl":"10.1186/s41687-025-00954-6","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"120"},"PeriodicalIF":2.9,"publicationDate":"2025-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12532545/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145303897","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Joint modeling of progression-free survival and patient-reported outcomes to evaluate the association between disease progression and symptoms among patients with relapsed/refractory multiple myeloma. 对复发/难治性多发性骨髓瘤患者的无进展生存期和患者报告的结果进行联合建模,以评估疾病进展和症状之间的关系。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-14 DOI: 10.1186/s41687-025-00943-9
Stefan Knop, Hermann Einsele, Devender Dhanda, Thomas S Marshall, Laurie Eliason, Dylan McLoone, Clyde Caisip, Jenny M H Chen, Doris Boehm, Amol D Dhamane, Karthik Ramasamy, Shannon Cope, Kevin Towle
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引用次数: 0
Clinical characteristics and quality of life for rhegmatogenous retinal detachment in a tertiary centre in Ghana: a case control study. 临床特点和生活质量的孔源性视网膜脱离在加纳三级中心:一个病例对照研究。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-07 DOI: 10.1186/s41687-025-00952-8
Akwasi Ahmed, Emmanuel Appiagyei, Jessica Sedhom, Arthur Brant, Andrew DesLauriers, Alec Bernard, Amos Aikins, Seth Lartey, Kwesi Amissah-Arthur
{"title":"Clinical characteristics and quality of life for rhegmatogenous retinal detachment in a tertiary centre in Ghana: a case control study.","authors":"Akwasi Ahmed, Emmanuel Appiagyei, Jessica Sedhom, Arthur Brant, Andrew DesLauriers, Alec Bernard, Amos Aikins, Seth Lartey, Kwesi Amissah-Arthur","doi":"10.1186/s41687-025-00952-8","DOIUrl":"10.1186/s41687-025-00952-8","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"116"},"PeriodicalIF":2.9,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12504154/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145239904","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Using personas and journey maps as knowledge translation tools to enhance clinicians' interpretation of PROM scores. 使用人物角色和旅程地图作为知识翻译工具,以提高临床医生对PROM分数的解释。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-07 DOI: 10.1186/s41687-025-00940-y
Jae-Yung Kwon, Melissa Moynihan, Kayoung Lee, Shauna Remin, Angela C Wolff
{"title":"Using personas and journey maps as knowledge translation tools to enhance clinicians' interpretation of PROM scores.","authors":"Jae-Yung Kwon, Melissa Moynihan, Kayoung Lee, Shauna Remin, Angela C Wolff","doi":"10.1186/s41687-025-00940-y","DOIUrl":"10.1186/s41687-025-00940-y","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"117"},"PeriodicalIF":2.9,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12504149/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145239873","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A qualitative study on the impact of hemophilia on sexual functioning and well-being in Dutch men. 荷兰男性血友病对性功能和幸福感影响的定性研究。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-09-29 DOI: 10.1186/s41687-025-00946-6
Tessa C M van Gastel, Lorynn Teela, Vicky Lehmann, Martijn R Brands, Jan P Marchal, Kees Gravendeel, Marjolein Peters, Karin Fijnvandraat, Lotte Haverman
{"title":"A qualitative study on the impact of hemophilia on sexual functioning and well-being in Dutch men.","authors":"Tessa C M van Gastel, Lorynn Teela, Vicky Lehmann, Martijn R Brands, Jan P Marchal, Kees Gravendeel, Marjolein Peters, Karin Fijnvandraat, Lotte Haverman","doi":"10.1186/s41687-025-00946-6","DOIUrl":"10.1186/s41687-025-00946-6","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"115"},"PeriodicalIF":2.9,"publicationDate":"2025-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12480166/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145193355","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Cross-cultural adaptation and validation of the Pelvic Floor Impact Questionnaire (PFIQ-7) short form in Urdu: a comprehensive linguistic and psychometric analysis. 骨盆底影响问卷(PFIQ-7)乌尔都语简短形式的跨文化适应和验证:一项全面的语言和心理测量分析。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-09-29 DOI: 10.1186/s41687-025-00932-y
Anum Malik, Urooj Kashif, Nazish Baloch, Amir Raza, Novera Chughtai

Background: Pelvic floor disorders (PFDs) affect women's physical, psychological, and social well-being, particularly in low- and middle-income countries. The PFIQ-7, a key patient-reported outcome (PROM) measure, assesses symptom severity and quality of life but lacks an Urdu adaptation. This study aims to translate, culturally adapt, and validate the PFIQ-7 for Urdu-speaking women to improve its clinical and research utility.

Methodology: This cross-sectional, observational study was conducted in two phases: Phase 1 focused on translating and culturally adapting the PFIQ-7, while Phase 2 assessed its psychometric properties. A total of 108 Urdu-literate women participated. The PFIQ-7 underwent rigorous translation following international guidelines, including forward and backward translation, consensus meetings, and pilot testing. The study evaluated reliability (Cronbach's alpha, interclass correlation) and validity (content, criterion, and construct validity) through expert review, S-POP-Q correlation, and known-group comparisons.

Results: The Urdu PFIQ-7 demonstrated excellent internal consistency (Cronbach's alpha = 0.884) and test-retest reliability (ICC = 0.995). Strong criterion validity was evidenced by significant correlations between PFIQ-7 scores and S-POP-Q findings (SCC = 0.67; p < 0.005). Construct validity was confirmed, as patients with higher S-POP-Q stages and urinary incontinence reported significantly higher PFIQ-7 scores compared to asymptomatic participants (p < 0.0005). Pilot testing confirmed the questionnaire's clarity, cultural relevance, and feasibility, with a completion time of approximately four to five minutes.

Conclusions: The Urdu PFIQ-7 is a reliable and valid tool for assessing PFD's impact on quality of life, supporting its use in clinical and research settings in Pakistan. Future research should explore its utility in rural and community-based settings to enhance generalizability.

背景:盆底疾病(PFDs)影响妇女的身体、心理和社会福祉,特别是在低收入和中等收入国家。PFIQ-7是一项关键的患者报告结果(PROM)测量,评估症状严重程度和生活质量,但缺乏乌尔都语适应。本研究旨在对乌尔都语妇女的PFIQ-7进行翻译、文化适应和验证,以提高其临床和研究效用。研究方法:本横断面观察性研究分两个阶段进行:第一阶段侧重于PFIQ-7的翻译和文化适应,而第二阶段评估其心理测量特性。共有108名懂乌尔都语的妇女参加。PFIQ-7按照国际准则进行了严格的翻译,包括前向和后向翻译、共识会议和试点测试。本研究通过专家评审、S-POP-Q相关和已知组比较来评估信度(Cronbach’s alpha、类间相关)和效度(内容、标准和结构效度)。结果:乌尔都语PFIQ-7具有良好的内部一致性(Cronbach’s alpha = 0.884)和重测信度(ICC = 0.995)。PFIQ-7评分与S-POP-Q结果之间的显著相关性证明了标准的强效性(SCC = 0.67; p)。结论:乌尔都语PFIQ-7是评估PFD对生活质量影响的可靠有效工具,支持其在巴基斯坦临床和研究环境中的使用。未来的研究应探索其在农村和社区环境中的效用,以提高普遍性。
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引用次数: 0
Meaningful changes in physical function and pain in patients with knee osteoarthritis. 膝关节骨关节炎患者的身体功能和疼痛有意义的改变。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-09-26 DOI: 10.1186/s41687-025-00941-x
Xiaodan Tang, Jin-Shei Lai, Sung Keun Kang, John Devin Peipert
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引用次数: 0
Artificial intelligence and the future of patient-centered outcomes. 人工智能和以患者为中心的未来。
IF 2.9 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-09-26 DOI: 10.1186/s41687-025-00950-w
Kevin P Weinfurt, Bryce B Reeve

Background: Terheyden et al. recently described a compelling vision for large language model-enabled patient-reported outcome measures (LLM-PROMs).

Main text: We support Terheyden et al.'s vision and offer complementary observations about the potential for generative artificial intelligence (GenAI) in assessing patient-centered outcomes. GenAI has the potential to improve the quality and efficiency of developing traditional PROMs and collecting patient experience data. Traditional PROMs rely on standardized questions and responses, which may introduce ambiguity about the health concept being assessed. Yet, interviewers who are trained in the meaning of the concepts can tailor questions to the respondent's experience and conversation style and have a back-and-forth clarification of meaning to ensure that both the interviewer's and respondent's meanings are aligned. The shortcoming of this approach is that it cannot be done at scale with human interviewers. However, trained GenAI interviewers could make such an assessment a reality for large samples of patients. The technology is already available to train GenAI interviewers in interview technique, the intent of each item, and a consistent approach toward coding the respondent's answer based on the conversation.

Conclusion: The health outcomes research field should actively inquire into what patient experience data can be collected via GenAI and rigorously evaluate the quality of the assessments obtained.

背景:Terheyden等人最近描述了一个令人信服的愿景,即支持大型语言模型的患者报告结果测量(LLM-PROMs)。我们支持Terheyden等人的愿景,并提供关于生成人工智能(GenAI)在评估以患者为中心的结果方面的潜力的补充观察。GenAI有潜力提高开发传统PROMs和收集患者经验数据的质量和效率。传统的PROMs依赖于标准化的问题和回答,这可能会对被评估的健康概念产生歧义。然而,接受过概念含义培训的采访者可以根据受访者的经验和谈话风格定制问题,并反复澄清含义,以确保采访者和受访者的含义一致。这种方法的缺点是它不能大规模地应用于人类采访者。然而,训练有素的GenAI采访者可以对大量患者样本进行这样的评估。该技术已经可以用于培训GenAI采访者的采访技巧,每个项目的意图,以及基于对话对被访者的答案进行编码的一致方法。结论:健康结局研究领域应积极探索GenAI可收集哪些患者体验数据,并严格评估评估结果的质量。
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引用次数: 0
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Journal of Patient-Reported Outcomes
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