Pub Date : 2026-02-07DOI: 10.1186/s41687-026-01009-0
Kinza Degerlund-Maldi, Malin Regardt, Camilla Nystrand Länsman, Lena Larsson, Ioannis Parodis, Emelie Heintz
{"title":"The value of EQ-5D-3L and EQ VAS as a patient-reported outcome measure for patients with ankylosing spondylitis in routine healthcare: an evaluation of construct validity and responsiveness based on the Swedish Rheumatology Quality Register.","authors":"Kinza Degerlund-Maldi, Malin Regardt, Camilla Nystrand Länsman, Lena Larsson, Ioannis Parodis, Emelie Heintz","doi":"10.1186/s41687-026-01009-0","DOIUrl":"https://doi.org/10.1186/s41687-026-01009-0","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146133257","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-02-06DOI: 10.1186/s41687-026-01012-5
Shawn McKown, Benjamin Arnold, Frederique Boucher, Helena Correia, Sonya Eremenco, Tomislav Geršić, Melinda Johnson, Andriana Koumbarou, Igor Matias, Emily Parks-Vernizzi, Tim Poepsel, Jiyoung Son, Erin Strouse, C B Terwee, Mark Wade
{"title":"Use of AI within COA linguistic validation and eCOA migration processes: analysis and good practice recommendations.","authors":"Shawn McKown, Benjamin Arnold, Frederique Boucher, Helena Correia, Sonya Eremenco, Tomislav Geršić, Melinda Johnson, Andriana Koumbarou, Igor Matias, Emily Parks-Vernizzi, Tim Poepsel, Jiyoung Son, Erin Strouse, C B Terwee, Mark Wade","doi":"10.1186/s41687-026-01012-5","DOIUrl":"https://doi.org/10.1186/s41687-026-01012-5","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146133204","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-02-05DOI: 10.1186/s41687-026-01011-6
Pauline Minguet, Laura Gerard, Camille Colson, Sarah Neis-Gilson, Benoit Misset, Bernard Lambermont, Pierre Kalfon, J Geoffrey Chase, Michael Beil, Olivier Bruyere, Charlotte Beaudart, Anne-Françoise Rousseau
Background: Discomfort perceived by patients during an intensive care unit (ICU) stay may limit their function, well-being, and quality of life after their stay. This study creates a comprehensive questionnaire (EXPRIM) able to distinguish and quantify the recollection of discomfort and emotional suffering experienced during a stay in an ICU stay, and to assess its performance.
Method: The measurement properties of the questionnaire were tested in a first sample of 50 patients recruited between February and July 2024 in a tertiary ICU, using internal consistency, test-retest reliability, standard error of measurement (SEM), and construct validity. Content validity was also tested, in a second sample of 20 patients and 10 ICU healthcare providers recruited between April and June 2024 in a regional ICU, using face-to-face qualitative interviews based on a semi-structured interview guide assessing comprehensibility, relevance and comprehensiveness of the instruction and items.
Results: EXPRIM is a 30-item questionnaire developed in French and translated in English. Its total score ranges from 0 to 10, reflecting the weighting of discomfort versus suffering. The internal consistency was very good (Cronbach's alpha coefficient 0.81). The intra- and inter-examinator reliabilities were excellent (Intraclass Coefficient Correlation = 0.875 and 0.858, respectively). SEM ranged from -0.071 to 0.035. Good correlations were found between EXPRIM and other questionnaires measuring similar concepts. There was good evidence of content validity to explore recollection of the ICU stay.
Conclusions: The EXPRIM questionnaire is a new tool with excellent psychometric properties to quantitatively assess the ICU experiences survivors recall after discharge. It is a promising tool to explore the extent of discomfort and emotional suffering during an ICU stay and to compare experiences between patients or populations.
{"title":"Quantifying the recollection of discomfort and emotional suffering during a stay in intensive care: development and validation of the EXPRIM questionnaire : EXPRIM: quantification of discomfort experienced during an ICU stay.","authors":"Pauline Minguet, Laura Gerard, Camille Colson, Sarah Neis-Gilson, Benoit Misset, Bernard Lambermont, Pierre Kalfon, J Geoffrey Chase, Michael Beil, Olivier Bruyere, Charlotte Beaudart, Anne-Françoise Rousseau","doi":"10.1186/s41687-026-01011-6","DOIUrl":"https://doi.org/10.1186/s41687-026-01011-6","url":null,"abstract":"<p><strong>Background: </strong>Discomfort perceived by patients during an intensive care unit (ICU) stay may limit their function, well-being, and quality of life after their stay. This study creates a comprehensive questionnaire (EXPRIM) able to distinguish and quantify the recollection of discomfort and emotional suffering experienced during a stay in an ICU stay, and to assess its performance.</p><p><strong>Method: </strong>The measurement properties of the questionnaire were tested in a first sample of 50 patients recruited between February and July 2024 in a tertiary ICU, using internal consistency, test-retest reliability, standard error of measurement (SEM), and construct validity. Content validity was also tested, in a second sample of 20 patients and 10 ICU healthcare providers recruited between April and June 2024 in a regional ICU, using face-to-face qualitative interviews based on a semi-structured interview guide assessing comprehensibility, relevance and comprehensiveness of the instruction and items.</p><p><strong>Results: </strong>EXPRIM is a 30-item questionnaire developed in French and translated in English. Its total score ranges from 0 to 10, reflecting the weighting of discomfort versus suffering. The internal consistency was very good (Cronbach's alpha coefficient 0.81). The intra- and inter-examinator reliabilities were excellent (Intraclass Coefficient Correlation = 0.875 and 0.858, respectively). SEM ranged from -0.071 to 0.035. Good correlations were found between EXPRIM and other questionnaires measuring similar concepts. There was good evidence of content validity to explore recollection of the ICU stay.</p><p><strong>Conclusions: </strong>The EXPRIM questionnaire is a new tool with excellent psychometric properties to quantitatively assess the ICU experiences survivors recall after discharge. It is a promising tool to explore the extent of discomfort and emotional suffering during an ICU stay and to compare experiences between patients or populations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146126712","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-31DOI: 10.1186/s41687-026-01000-9
Ian Kudel, Annette Christianson, Jordan Jackson, Zoya Shamsi, Sushil Beriwal
{"title":"Longitudinal comparison of ePRO satisfaction ratings in patients with cancer receiving systemic or radiotherapy.","authors":"Ian Kudel, Annette Christianson, Jordan Jackson, Zoya Shamsi, Sushil Beriwal","doi":"10.1186/s41687-026-01000-9","DOIUrl":"https://doi.org/10.1186/s41687-026-01000-9","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146094198","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-31DOI: 10.1186/s41687-026-01001-8
Sadia Ahmed, Marcia Bruce, D'Arcy Duquette, Veronika Kiryanova, Meron Seyoum, Simron Sidhu, Gloria Wilkinson, Fatima Al Sayah, Jeffrey A Johnson, Arto Ohinmaa, Allison Soprovich
{"title":"Patients as partners in a research advisory council role: describing the APERSU Patient Engagement Network.","authors":"Sadia Ahmed, Marcia Bruce, D'Arcy Duquette, Veronika Kiryanova, Meron Seyoum, Simron Sidhu, Gloria Wilkinson, Fatima Al Sayah, Jeffrey A Johnson, Arto Ohinmaa, Allison Soprovich","doi":"10.1186/s41687-026-01001-8","DOIUrl":"https://doi.org/10.1186/s41687-026-01001-8","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146094187","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-30DOI: 10.1186/s41687-025-00990-2
L Bernardi, M R Mollo, C Sartor, S Barbaglia, D Gargano, F Anastasi, G Camiciottoli, C Allegrini, C Caruso, I Baiardini, L Cappellari
{"title":"Living with chronic rhinosinusitis with nasal polyposis (CRSwNP): an experience to amplify Italian patients' voices.","authors":"L Bernardi, M R Mollo, C Sartor, S Barbaglia, D Gargano, F Anastasi, G Camiciottoli, C Allegrini, C Caruso, I Baiardini, L Cappellari","doi":"10.1186/s41687-025-00990-2","DOIUrl":"https://doi.org/10.1186/s41687-025-00990-2","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146087092","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-29DOI: 10.1186/s41687-026-01006-3
Guillaume Fontaine, Joshua Ramos, Meagan Mooney, Marie-Eve Perron, Laura Crump, Sylvie D Lambert
{"title":"Implementation strategies for embedding patient-reported outcome and experience measures (PROMs/PREMs) in routine care: secondary analysis of an umbrella review.","authors":"Guillaume Fontaine, Joshua Ramos, Meagan Mooney, Marie-Eve Perron, Laura Crump, Sylvie D Lambert","doi":"10.1186/s41687-026-01006-3","DOIUrl":"10.1186/s41687-026-01006-3","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"17"},"PeriodicalIF":2.9,"publicationDate":"2026-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12864633/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146087159","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 : 2026-01-29DOI: 10.1186/s41687-026-01002-7
Farheen Khan, Michelle Prunier, Ivana Ristevski, Maja Trantalovski, Helen Dimaras
{"title":"Assessing patient engagement approaches in the development of patient reported outcome measures.","authors":"Farheen Khan, Michelle Prunier, Ivana Ristevski, Maja Trantalovski, Helen Dimaras","doi":"10.1186/s41687-026-01002-7","DOIUrl":"https://doi.org/10.1186/s41687-026-01002-7","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146087138","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-27DOI: 10.1186/s41687-026-01008-1
Lea Doppelbauer, Maria Margarete Karsten, Anna Tatzber, Laura Hatzler, Pimrapat Gebert, Jasper Brands, Rosanne Andriessen, Therese Pross
{"title":"From participatory design to clinical routine: new concepts for visualizing patient-reported outcomes in breast cancer care.","authors":"Lea Doppelbauer, Maria Margarete Karsten, Anna Tatzber, Laura Hatzler, Pimrapat Gebert, Jasper Brands, Rosanne Andriessen, Therese Pross","doi":"10.1186/s41687-026-01008-1","DOIUrl":"https://doi.org/10.1186/s41687-026-01008-1","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146054120","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-27DOI: 10.1186/s41687-026-00997-3
Marijke Veenstra, Lisa Victoria Burrell, Ingeborg Strømseng Sjetne, Ann-Marie Towers, Maren Kristine Raknes Sogstad
{"title":"Validity and reliability of the Norwegian Adult Social Care Outcomes Toolkit (ASCOT CH4 and INT4) in three long-term care settings.","authors":"Marijke Veenstra, Lisa Victoria Burrell, Ingeborg Strømseng Sjetne, Ann-Marie Towers, Maren Kristine Raknes Sogstad","doi":"10.1186/s41687-026-00997-3","DOIUrl":"https://doi.org/10.1186/s41687-026-00997-3","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146067429","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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