Pub Date : 2026-01-18DOI: 10.1186/s41687-026-00993-7
Anna Eriksson, Lotti Orwelius, Kristofer Årestedt, Michelle S Chew, Marika Wenemark
{"title":"Development and initial psychometric evaluation of a questionnaire for post intensive care recovery - PIR.","authors":"Anna Eriksson, Lotti Orwelius, Kristofer Årestedt, Michelle S Chew, Marika Wenemark","doi":"10.1186/s41687-026-00993-7","DOIUrl":"10.1186/s41687-026-00993-7","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"16"},"PeriodicalIF":2.9,"publicationDate":"2026-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12847581/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145999419","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}
Pub Date : 2026-01-18DOI: 10.1186/s41687-026-00995-5
Antoine Dany, Paul Aujoulat, Jean-Yves Le Reste, Delphine Le Goff
{"title":"Multi-professional primary healthcare centres: psychometric testing of a new quality-of-care instrument.","authors":"Antoine Dany, Paul Aujoulat, Jean-Yves Le Reste, Delphine Le Goff","doi":"10.1186/s41687-026-00995-5","DOIUrl":"10.1186/s41687-026-00995-5","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"21"},"PeriodicalIF":2.9,"publicationDate":"2026-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12894520/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145999569","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}
Pub Date : 2026-01-14DOI: 10.1186/s41687-026-00992-8
Tariq Alanezi, Ben Li, Leen Al-Omran, Lina Alshabanah, Nawaf K Alkhayal, Meena Verma, Husam Alrumaih, Mohamad A Hussain, Muhammad Mamdani, Mohammed Al-Omran
Background: Artificial intelligence (AI) and machine learning (ML) are increasingly integrated into healthcare, offering potential advancements in patient-reported outcome measures (PROMs) for surgical populations. Improved PROMs can enhance patient-centered care by accurately capturing patient experiences with minimal burden.
Objective: In the context of surgery, where recovery trajectories vary widely, this study aims to systematically review the use of AI and ML in the development, application, and prediction capabilities of PROMs in surgical populations, with a focus on psychometric properties and the predictive accuracy of post-surgical outcomes.
Methods: A comprehensive search of the PubMed database was conducted from inception until August 2024. Studies were included if they utilized AI or ML in the development, application, or predicting PROMs for surgical patients. Methodological quality was assessed using COSMIN and PROBAST tools, depending on study design. A qualitative synthesis of findings was performed.
Results: Twenty-two studies met the inclusion criteria, with 19 rated as high quality. Six studies focused on developing computer adaptive tests (CAT) PROMs, seven on evaluating psychometric properties, and five on ML for post-surgical outcome prediction. CAT PROMs showed comparable measurement accuracy to traditional PROMs, good to excellent construct validity, and significantly reduced patient burden by reducing the length of questionnaires. ML algorithms, such as logistic regression, random forests, extreme gradient boosting, and neural networks, achieved similar predictive accuracy for post-surgical outcomes, with no single model demonstrating consistent superiority.
Conclusions: AI and ML have the potential to improve PROM utilization in surgical care by enhancing efficiency and personalization while maintaining data quality. Clinicians can use AI-driven PROMs to reduce patient burden and integrate ML models for accurate post-surgical outcome prediction, thereby optimizing patient-centered care.
{"title":"Machine learning in the development and application of patient-reported outcome measures (PROMs) for surgical patients: a systematic review.","authors":"Tariq Alanezi, Ben Li, Leen Al-Omran, Lina Alshabanah, Nawaf K Alkhayal, Meena Verma, Husam Alrumaih, Mohamad A Hussain, Muhammad Mamdani, Mohammed Al-Omran","doi":"10.1186/s41687-026-00992-8","DOIUrl":"10.1186/s41687-026-00992-8","url":null,"abstract":"<p><strong>Background: </strong>Artificial intelligence (AI) and machine learning (ML) are increasingly integrated into healthcare, offering potential advancements in patient-reported outcome measures (PROMs) for surgical populations. Improved PROMs can enhance patient-centered care by accurately capturing patient experiences with minimal burden.</p><p><strong>Objective: </strong>In the context of surgery, where recovery trajectories vary widely, this study aims to systematically review the use of AI and ML in the development, application, and prediction capabilities of PROMs in surgical populations, with a focus on psychometric properties and the predictive accuracy of post-surgical outcomes.</p><p><strong>Methods: </strong>A comprehensive search of the PubMed database was conducted from inception until August 2024. Studies were included if they utilized AI or ML in the development, application, or predicting PROMs for surgical patients. Methodological quality was assessed using COSMIN and PROBAST tools, depending on study design. A qualitative synthesis of findings was performed.</p><p><strong>Results: </strong>Twenty-two studies met the inclusion criteria, with 19 rated as high quality. Six studies focused on developing computer adaptive tests (CAT) PROMs, seven on evaluating psychometric properties, and five on ML for post-surgical outcome prediction. CAT PROMs showed comparable measurement accuracy to traditional PROMs, good to excellent construct validity, and significantly reduced patient burden by reducing the length of questionnaires. ML algorithms, such as logistic regression, random forests, extreme gradient boosting, and neural networks, achieved similar predictive accuracy for post-surgical outcomes, with no single model demonstrating consistent superiority.</p><p><strong>Conclusions: </strong>AI and ML have the potential to improve PROM utilization in surgical care by enhancing efficiency and personalization while maintaining data quality. Clinicians can use AI-driven PROMs to reduce patient burden and integrate ML models for accurate post-surgical outcome prediction, thereby optimizing patient-centered care.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"20"},"PeriodicalIF":2.9,"publicationDate":"2026-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12891313/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145967297","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}
Pub Date : 2026-01-12DOI: 10.1186/s41687-025-00989-9
Catherine Fielding, Sarah Brand, Apostolos Fakis, Nicholas M Selby, Heather Buchanan
{"title":"Developing and evaluating the patient's perspective of needling questionnaire for haemodialysis.","authors":"Catherine Fielding, Sarah Brand, Apostolos Fakis, Nicholas M Selby, Heather Buchanan","doi":"10.1186/s41687-025-00989-9","DOIUrl":"10.1186/s41687-025-00989-9","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"19"},"PeriodicalIF":2.9,"publicationDate":"2026-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12886701/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145953294","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}
Purpose: Patient-reported outcomes (PROs) assist patients and clinicians in assessing treatment effectiveness and enhancing healthcare quality. This study aims to explore and analyze the application and characteristics of PROs in clinical trials of Traditional Chinese Medicine (TCM).
Methods: This cross-sectional study was based on randomized clinical trials of TCM between January 1, 2010, and December 31, 2022 in International Clinical Trials Registry Platform. For each included trial, data including study phase, design, participant demographics, target diseases, PROs, and PRO measurements were extracted. Trials were categorized into three groups: (1) recorded specified patient-reported outcome tools, (2) referenced patient subjective outcomes without specified tools, and (3) did not mention any PROs. Further descriptive statistical analysis were conducted on the most commonly used PRO tools in different countries and for different diseases.
Results: Among a total of 7783 eligible trials, 4858 (62.4%) listed explicit PRO tools, and 850 (10.9%) referenced PROs without specified tools. The most common conditions evaluated by PRO tools were musculoskeletal diseases (935 trials, 19.2%), symptoms (714, 14.7%), and neurological diseases (500, 10.3%). Frequently used PRO tools included the Visual Analogue Scale (VAS), 36-item Short-Form Health Questionnaire, and Pittsburgh Sleep Quality Index. Regionally, most PRO-related trials were in the Western Pacific (3904, 68.4%) and fewest in Africa (8, 0.1%). Countries conducting the most PRO-related trials were China, Iran, the USA, South Korea, and Brazil, focusing on musculoskeletal, symptoms, neurological, genitourinary, and digestive diseases, with varying popular disease-specific PRO tools by country. Musculoskeletal diseases were the primary focus in China, Brazil, and South Korea.
Conclusions: The use of PROs in TCM clinical trials has grown during the study period. However, there was an uneven regional distribution of PRO application and a lack of standardized, reliable PRO tools tailored for TCM. Great efforts are needed to enhance the quality and promote the use of PRO tools in TCM clinical research.
{"title":"Application of patient-reported outcomes in clinical trials of traditional Chinese medicine registered in international clinical trials registry platform, from 2010 to 2022: a cross-sectional study.","authors":"Yuanyuan Lin, Xiaowen Zhang, Zhenqian Xu, Lin Liu, Chen Shen, Mei Han, Huijuan Cao, Yutong Fei, Jianping Liu, Hongguo Rong, Chunxia Zhou","doi":"10.1186/s41687-025-00982-2","DOIUrl":"10.1186/s41687-025-00982-2","url":null,"abstract":"<p><strong>Purpose: </strong>Patient-reported outcomes (PROs) assist patients and clinicians in assessing treatment effectiveness and enhancing healthcare quality. This study aims to explore and analyze the application and characteristics of PROs in clinical trials of Traditional Chinese Medicine (TCM).</p><p><strong>Methods: </strong>This cross-sectional study was based on randomized clinical trials of TCM between January 1, 2010, and December 31, 2022 in International Clinical Trials Registry Platform. For each included trial, data including study phase, design, participant demographics, target diseases, PROs, and PRO measurements were extracted. Trials were categorized into three groups: (1) recorded specified patient-reported outcome tools, (2) referenced patient subjective outcomes without specified tools, and (3) did not mention any PROs. Further descriptive statistical analysis were conducted on the most commonly used PRO tools in different countries and for different diseases.</p><p><strong>Results: </strong>Among a total of 7783 eligible trials, 4858 (62.4%) listed explicit PRO tools, and 850 (10.9%) referenced PROs without specified tools. The most common conditions evaluated by PRO tools were musculoskeletal diseases (935 trials, 19.2%), symptoms (714, 14.7%), and neurological diseases (500, 10.3%). Frequently used PRO tools included the Visual Analogue Scale (VAS), 36-item Short-Form Health Questionnaire, and Pittsburgh Sleep Quality Index. Regionally, most PRO-related trials were in the Western Pacific (3904, 68.4%) and fewest in Africa (8, 0.1%). Countries conducting the most PRO-related trials were China, Iran, the USA, South Korea, and Brazil, focusing on musculoskeletal, symptoms, neurological, genitourinary, and digestive diseases, with varying popular disease-specific PRO tools by country. Musculoskeletal diseases were the primary focus in China, Brazil, and South Korea.</p><p><strong>Conclusions: </strong>The use of PROs in TCM clinical trials has grown during the study period. However, there was an uneven regional distribution of PRO application and a lack of standardized, reliable PRO tools tailored for TCM. Great efforts are needed to enhance the quality and promote the use of PRO tools in TCM clinical research.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"18"},"PeriodicalIF":2.9,"publicationDate":"2026-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12881188/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145935398","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}
Pub Date : 2026-01-07DOI: 10.1186/s41687-025-00987-x
Courtney N Hurt, Maja Kuharic, Sara Shaunfield, Juergen Beck, Alex Bastian, Kevin Fowler, Emilie Jaeger, Marcus May, Erik van den Berg, John Friedewald, John D Peipert
{"title":"Development of a conceptual model of BKV impacts on health-related quality of life in kidney transplant recipients: a qualitative study.","authors":"Courtney N Hurt, Maja Kuharic, Sara Shaunfield, Juergen Beck, Alex Bastian, Kevin Fowler, Emilie Jaeger, Marcus May, Erik van den Berg, John Friedewald, John D Peipert","doi":"10.1186/s41687-025-00987-x","DOIUrl":"10.1186/s41687-025-00987-x","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"4"},"PeriodicalIF":2.9,"publicationDate":"2026-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12789305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145913251","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}
Pub Date : 2025-12-31DOI: 10.1186/s41687-025-00988-w
Maria Aagesen, Helle Pappot, Karin Piil, Ligita Paskeviciute Frøding, Emma Balch Steen-Olsen, Elfriede Greimel, Line Bentsen
{"title":"Exploration of the relevance and comprehensibility of the European Organization for the Research and Treatment of Cancer Sexual Health Questionnaire among Danish young adults aged 18-39: a national cross-sectional study.","authors":"Maria Aagesen, Helle Pappot, Karin Piil, Ligita Paskeviciute Frøding, Emma Balch Steen-Olsen, Elfriede Greimel, Line Bentsen","doi":"10.1186/s41687-025-00988-w","DOIUrl":"10.1186/s41687-025-00988-w","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"3"},"PeriodicalIF":2.9,"publicationDate":"2025-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12770101/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145865799","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}
Pub Date : 2025-12-29DOI: 10.1186/s41687-025-00972-4
Andrea Phillips-Beyer, Ariane K Kawata, Leah Kleinman, Antonio Olivieri
{"title":"Confirming content validity of The Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ) among adults with insomnia in four European countries.","authors":"Andrea Phillips-Beyer, Ariane K Kawata, Leah Kleinman, Antonio Olivieri","doi":"10.1186/s41687-025-00972-4","DOIUrl":"10.1186/s41687-025-00972-4","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"143"},"PeriodicalIF":2.9,"publicationDate":"2025-12-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12748474/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145858105","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}
Pub Date : 2025-12-22DOI: 10.1186/s41687-025-00983-1
Ron D Hays, Julie A Brown, Emma Bianculli, Marc Elliott
<p><strong>Background: </strong>The Consumer Assessment of Healthcare Providers and Systems (CAHPS<sup>®</sup>) surveys are widely used to evaluate patients' experiences with healthcare. Although the surveys have been extensively assessed and periodically updated, concerns persist regarding their content, length, and score distributions. This study aimed to gather systematic stakeholder feedback to inform future revisions of CAHPS ambulatory surveys.</p><p><strong>Methodology: </strong>A modified Delphi method was employed using the ExpertLens™ online platform. A panel of 20 members representing a broad stakeholder community, including survey sponsors, survey experts, patient experience advocates, and federal representatives, participated in three phases. The first phase was an initial rating of the essentialness (required, optional, not essential) of 46 existing item topics using a 1 (Not Essential) to 9 (Very Essential) scale with scores of 1-3 used for a topic that should not be included, 4-6 used for a topic that should be optional, and 7-9 for a topic that should be required in a CAHPS survey of health plans, clinicians, or group practices. The second phase was an asynchronous online discussion of the initial ratings, and the third phase was a final rating of the 46 existing item topics. The reliability of ratings was assessed using a mixed-effects analysis of variance model. Means and standard deviations of essentialness ratings were also analyzed. Verbatim comments from the experts were summarized to provide additional insights.</p><p><strong>Results: </strong>Reliability of expert 1-9 essentialness ratings improved from the initial round (reliability = 0.63, intraclass correlation = 0.08) to the final round (reliability = 0.70, intraclass correlation = 0.10). While most existing items were deemed essential by most stakeholders, there were noteworthy (0.08 or larger) increases from the initial to final rating phases in essentialness for items related to digital access, medication reconciliation, provider communication, and appeals processes, and notable decreases for specialist care ratings, access to medical questions during off-hours, and provider knowledge of chronic conditions. Stakeholders emphasized the importance of access to care, communication and coordination, respectful interactions with staff and providers, and clear cost information. Several potential topics missing from current surveys were identified, including unfair treatment, mental health integration, maternity care, language concordance, trust, self-management, patient safety, continuity of care, care coordination, and claims processing.</p><p><strong>Conclusions: </strong>This study provides valuable insights into stakeholder perspectives on the relevance and potential improvements to CAHPS ambulatory survey content. The findings support revisions to existing items to enhance their clarity and actionability, as well as the inclusion of new topics that reflect evolving
{"title":"Stakeholder input on the CAHPS ambulatory surveys.","authors":"Ron D Hays, Julie A Brown, Emma Bianculli, Marc Elliott","doi":"10.1186/s41687-025-00983-1","DOIUrl":"10.1186/s41687-025-00983-1","url":null,"abstract":"<p><strong>Background: </strong>The Consumer Assessment of Healthcare Providers and Systems (CAHPS<sup>®</sup>) surveys are widely used to evaluate patients' experiences with healthcare. Although the surveys have been extensively assessed and periodically updated, concerns persist regarding their content, length, and score distributions. This study aimed to gather systematic stakeholder feedback to inform future revisions of CAHPS ambulatory surveys.</p><p><strong>Methodology: </strong>A modified Delphi method was employed using the ExpertLens™ online platform. A panel of 20 members representing a broad stakeholder community, including survey sponsors, survey experts, patient experience advocates, and federal representatives, participated in three phases. The first phase was an initial rating of the essentialness (required, optional, not essential) of 46 existing item topics using a 1 (Not Essential) to 9 (Very Essential) scale with scores of 1-3 used for a topic that should not be included, 4-6 used for a topic that should be optional, and 7-9 for a topic that should be required in a CAHPS survey of health plans, clinicians, or group practices. The second phase was an asynchronous online discussion of the initial ratings, and the third phase was a final rating of the 46 existing item topics. The reliability of ratings was assessed using a mixed-effects analysis of variance model. Means and standard deviations of essentialness ratings were also analyzed. Verbatim comments from the experts were summarized to provide additional insights.</p><p><strong>Results: </strong>Reliability of expert 1-9 essentialness ratings improved from the initial round (reliability = 0.63, intraclass correlation = 0.08) to the final round (reliability = 0.70, intraclass correlation = 0.10). While most existing items were deemed essential by most stakeholders, there were noteworthy (0.08 or larger) increases from the initial to final rating phases in essentialness for items related to digital access, medication reconciliation, provider communication, and appeals processes, and notable decreases for specialist care ratings, access to medical questions during off-hours, and provider knowledge of chronic conditions. Stakeholders emphasized the importance of access to care, communication and coordination, respectful interactions with staff and providers, and clear cost information. Several potential topics missing from current surveys were identified, including unfair treatment, mental health integration, maternity care, language concordance, trust, self-management, patient safety, continuity of care, care coordination, and claims processing.</p><p><strong>Conclusions: </strong>This study provides valuable insights into stakeholder perspectives on the relevance and potential improvements to CAHPS ambulatory survey content. The findings support revisions to existing items to enhance their clarity and actionability, as well as the inclusion of new topics that reflect evolving ","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"14"},"PeriodicalIF":2.9,"publicationDate":"2025-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12834880/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145805688","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}