Journal of Patient-Reported Outcomes最新文献

{"title":"Establishing content validity of the Dimensional Anhedonia Rating Scale.","authors":"Stephanie Bean, Rahul Dhanda, Christina A Graham, Deborah Hoffman, Mariam Rodriguez-Lee, Adrian Ionescu, Stella Karantzoulis, Sidney H Kennedy, Sakina J Rizvi","doi":"10.1186/s41687-025-00860-x","DOIUrl":"10.1186/s41687-025-00860-x","url":null,"abstract":"<p><strong>Background: </strong>This study was designed to evaluate content validity of the Dimensional Anhedonia Rating Scale (DARS), a patient-reported outcome measure, in adults with anhedonia in the context of major depressive disorder (MDD). To accomplish this, a conceptual model including the symptoms and impacts of anhedonia in the context of MDD was developed and refined through a targeted literature review, clinician interviews (N = 6), and participant interviews (N = 20).</p><p><strong>Results: </strong>Using the final conceptual model, an item mapping exercise was conducted for the DARS, demonstrating that it provided suitable concept coverage in this population. Cognitive debriefing of the DARS with participants demonstrated that it was generally well understood and clear.</p><p><strong>Conclusions: </strong>Overall, the study established that the DARS demonstrates content validity in adults with anhedonia in the context of MDD. Other measurement properties of the DARS will be evaluated in planned psychometric analyses.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"31"},"PeriodicalIF":2.4,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11896914/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606703","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}

{"title":"Psychometric evaluation of the unmet needs instrument for carers of people with dementia (UNI-C).","authors":"Elise Mansfield, Emilie Cameron, Matthew Clapham, Alix Hall, Allison Boyes","doi":"10.1186/s41687-025-00856-7","DOIUrl":"10.1186/s41687-025-00856-7","url":null,"abstract":"<p><strong>Background: </strong>Carers play an important role in providing practical and emotional support to people with dementia. There is a need to ensure carers are supported in this role to maximise their ability to provide care while maintaining their own wellbeing. This study aimed to develop a psychometrically rigorous self-report instrument to assess the unmet needs of carers of people with dementia.</p><p><strong>Methods: </strong>The Unmet Needs Instrument for Carers of People with Dementia (UNI-C) was developed using a multi-methods approach including a comprehensive literature review, in-depth interviews and focus groups, expert opinion, cognitive interviews and pilot testing. A cross-sectional survey of 169 carers was used to examine the psychometric characteristics of the instrument. Specifically, internal reliability, and structural and convergent validity were assessed and the number of items reduced.</p><p><strong>Results: </strong>The original 80 item instrument was reduced to 46 items across four domains based on prevalence, item-total and pairwise correlations, factor loadings and clinical relevance. The resulting instrument, named the UNI-C46, showed acceptable evidence of structural and convergent validity, and good internal reliability (α = 0.94) and acceptability. The four domains measure 'Your own wellbeing' (16 items), 'Finding information' (12 items), 'Managing practical needs' (10 items), and 'Managing dementia symptoms' (8 items).</p><p><strong>Conclusions: </strong>This study provides the first demonstration of reliability and validity of the UNI-C46. Further testing of these properties with a larger and more representative sample of carers is recommended.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"28"},"PeriodicalIF":2.4,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11896954/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606705","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}

{"title":"Depression drives perceived quality of life following minor stroke.","authors":"Martina Gjyzari, Elisabeth Breese Marsh","doi":"10.1186/s41687-025-00861-w","DOIUrl":"10.1186/s41687-025-00861-w","url":null,"abstract":"<p><strong>Background: </strong>Stroke outcomes are typically assessed using objective scales focused on severity and functional ability that may overlook subtle cognitive changes and fail to account for patients' perceptions of recovery and quality of life. This study aimed to compare patient-reported outcomes (PROs) to objective recovery metrics in patients with minor stroke and identify factors associated with perceived recovery and quality of life.</p><p><strong>Methodology: </strong>Data from 134 patients with minor stroke were prospectively collected at 1-, 6-, and 12-months post-infarct. Objective assessments measured stroke severity, functional outcomes, activities of daily living, and global cognitive function. PROs included assessments of function, depression, fatigue, symptomatic improvement, and quality of life. Regression models were used to evaluate the relationship between subjective PROs and physician-obtained measures.</p><p><strong>Results: </strong>Analyses revealed an important role for mental health factors in subjective measures of recovery, though cognitive dysfunction was not significantly associated with either subjective improvement or quality of life despite being commonly endorsed. Depression and fatigue were inversely associated with both satisfaction and quality of life, along with stroke severity and overall functional impairment during both short- and long-term recovery periods. The impact of depression on quality of life increased over time, while stroke severity and functional status were associated with perceived symptomatic improvement at all time points.</p><p><strong>Conclusions: </strong>For patients with minor stroke, depression is negatively associated with perception of symptomatic recovery and quality of life, particularly at later time points. Addressing post-stroke depression may improve patient-reported outcomes, though further research is needed to determine its impact on broader measures of post-stroke morbidity.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"29"},"PeriodicalIF":2.4,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11896911/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606700","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}

{"title":"Sarcoma Assessment Measure-Paediatric Version (SAM-Paeds): development of a disease-specific patient reported outcome measure for children with sarcoma.","authors":"Rachel M Taylor, Sophie-Anne Purnell, Sian Hocking, Rachael Windsor, Craig Gerrand, Meriel Jenney, Madeleine Adams","doi":"10.1186/s41687-025-00857-6","DOIUrl":"10.1186/s41687-025-00857-6","url":null,"abstract":"<p><strong>Purpose: </strong>Sarcomas account for approximately 10-15% of all cancer in children aged ≤ 16. Poorer health-related quality of life (HRQoL) is recorded in comparison to other cancers; however, these studies are limited by generic HRQoL measures not being specific to patients with sarcoma. The aim of this study was to develop paediatric version of the Sarcoma Assessment Measure (SAM).</p><p><strong>Methods: </strong>This mixed methods study comprised three stages: item generation, item reduction and establishing content validity. Children aged 8-16 years and parents of children aged 0-16 years with a diagnosis of sarcoma and within 5 years of completion of treatment were invited to participate.</p><p><strong>Results: </strong>A total of 29 children and 38 parents from three sites participated in the study. Content analysis of the interview transcripts identified 277 post-diagnosis experience statements of which 128 'items' were included in an Item Reduction Questionnaire, grouped into six domains; physical, disability and inclusion; impact of diagnosis; emotional, impact on family, education. Items with a mean score < 5 and a content validity index of < 0.75 were removed. The final version of SAM-Paeds comprises 33 items (parent version) and 21 items (child version).</p><p><strong>Conclusion: </strong>This study has developed the first disease-specific HRQoL measure for paediatric sarcoma patients. SAM-Paeds is planned for inclusion within international sarcoma clinical trials and will be validated alongside current generic measures. Developed with the same methodology as the adult SAM questionnaire will facilitate the assessment of QoL longitudinally to assess the long-term impact of the diagnosis and treatment of sarcoma in childhood.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"30"},"PeriodicalIF":2.4,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11896951/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606707","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}

{"title":"Mapping immune checkpoint inhibitor side effects to item libraries for use in real-time side effect monitoring systems.","authors":"Julia Lai-Kwon, Michael Jefford, Stephanie Best, Iris Zhang, David Cella, Claire Piccinin, Bryce B Reeve, Claudia Rutherford","doi":"10.1186/s41687-025-00855-8","DOIUrl":"10.1186/s41687-025-00855-8","url":null,"abstract":"<p><strong>Background: </strong>Monitoring for the side effects of novel therapies using patient-reported outcomes (PROs) is critical for ensuring patient safety. Existing static patient-reported outcome measures may not provide adequate coverage of novel side effects. Item libraries provide a flexible approach to monitoring for side effects using customized item lists, but the ideal process for matching side effects to items sourced from multiple item libraries is yet to be established. We sought to develop a pragmatic process for mapping side effects to items from three major item libraries using immune checkpoint inhibitor (ICI) side effects as an example.</p><p><strong>Methods: </strong>Using a consumer- and clinician-driven list of 36 ICI side effects, two authors independently mapped side effects to Common Terminology Criteria for Adverse Event (CTCAE) terms, and then to three item libraries: the Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), the European Organisation for Research and Treatment of Cancer (EORTC) Item Library, and the Functional Assessment of Chronic Illness Therapy (FACIT) searchable library. The rates of inter-rater agreement were recorded. Following item collation from the item libraries, we devised criteria for selecting the optimal item for each side effect for inclusion in a future electronic PRO system based on guidance from the above groups.</p><p><strong>Results: </strong>All 36 side effects mapped to at least one CTCAE term, with eight mapping to more than one term. Twenty-three side effects mapped to at least one PRO-CTCAE term, 35 side effects mapped to at least one EORTC item, and 31 side effects mapped to at least one FACIT item. The inter-rater agreement rate was 100% (PRO-CTCAE), 83% (EORTC) and 75% (FACIT). Pre-determined criteria were applied to select the optimal item for each side effect from the three item libraries, producing a final 61-item list.</p><p><strong>Conclusion: </strong>Using ICI side effects as an example, we developed a pragmatic approach to creating customized item lists from three major item libraries to monitor for side effects of novel therapies in routine care. This process highlighted the challenges of using item libraries and priorities for future work to improve their usability.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"27"},"PeriodicalIF":2.4,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11885683/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143568471","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}

{"title":"Principles of good practice for translation of electronic clinical outcome assessments.","authors":"Huda Shalhoub, M Turner, A Bradley-Gilbride, S Eremenco, H Muehlan, E Parks-Vernizzi, B Arnold, D Kuliś, C Anfray, J E Chaplin, J P Repo","doi":"10.1186/s41687-025-00859-4","DOIUrl":"10.1186/s41687-025-00859-4","url":null,"abstract":"<p><strong>Background: </strong>While many publications have outlined good practice recommendations for translation and electronic implementation of clinical outcome assessments (COAs), they are often treated as independent processes. The scientific literature currently lacks recommended guidelines on the process of concurrent translation, cultural adaptation and electronic implementation of COAs for clinical research. In response to this need, the ISOQOL Translation and Cultural Adaptation Special Interest Group (TCA-SIG) sought to identify actionable steps for addressing the scientific and operational intricacies in this concurrent process.</p><p><strong>Methods: </strong>Using snowball sampling, semi-structured questions were sent to language service providers (LSPs), electronic clinical outcome assessment (eCOA) providers, and developers/copyright holders. The TCA-SIG workgroup, consisting of 13 members, then led the methodological groundwork for the disseminated surveys and established a cohesive set of recommendations.</p><p><strong>Results: </strong>The collective feedback that led to the recommendations included a total of 30 experts who responded to the surveys. Most of the respondents worked in companies or represented organizations based in the US and Europe.</p><p><strong>Recommendations: </strong>The recommendations fall into two main categories: namely, operational and scientific. The operational recommendations consist of active involvement from all stakeholders, the communication of clear expectations from the start, and better clarification of timelines of LSPs involved. Examples of scientific recommendations are electronic language feasibility assessment (ELFA), screenshot proofreading, as well as COA-specific developer and copyright holder guidelines for electronic implementation. COA-specific guidelines and instructions for electronic implementation and evaluation were seen to be needed and key recommendations are discussed in detail in this paper.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"26"},"PeriodicalIF":2.4,"publicationDate":"2025-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11880485/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143543809","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}

{"title":"Psychological indicators for healthy aging: validation of the German short version of Ryff's scales of psychological well-being (SPWB).","authors":"Ana N Tibubos, Anna C Reinwarth, Iris Reiner, Antonia M Werner, Philipp S Wild, Thomas Münzel, Jochem König, Karl J Lackner, Norbert Pfeiffer, Manfred E Beutel","doi":"10.1186/s41687-025-00854-9","DOIUrl":"10.1186/s41687-025-00854-9","url":null,"abstract":"<p><strong>Background: </strong>The important roles of well-being as realization of one's true potential for healthy aging have been highlighted by literature of the recent decades. The Scales of Psychological Well-being (SPWB) are an internationally recognized measurement tool for psychological well-being. Yet, sound validation of the German SPWB 18-item version has been lacking to date. Therefore, the present study aims to (1) test the psychometric properties of the German SPWB 18-item version in terms of factorial validity and (2) determine construct validity by investigating its correlations with psychosocial variables, mental and physical health. (3) Sociodemographic characteristics of the SPWB in a middle to old age German population was explored.</p><p><strong>Methodology: </strong>Data of N = 3,374 participants 45-85 years old of the 10-year follow-up (2017-2022) of the Gutenberg Health Study (GHS) were analyzed. Descriptive analyses and inference statistical analyses were performed to assess construct validity. In order to determine the psychometric properties, item characteristics and reliability coefficients were analyzed. Confirmatory factor analyses tested the proposed theoretical factorial structure.</p><p><strong>Results: </strong>Construct validity of the SPWB was established with respect to sociodemographic, psychosocial (social support and resilient coping), and health variables (sleeping problems, depression and anxiety symptoms, stress, loneliness, and somatic diseases). Analysis of the psychometric properties of the German SPWB 18-item version rendered support for the theoretically proposed multidimensional structure of psychological well-being in our sample rather than a one factorial structure. Bi-factor models that take the method effects of positively and negatively formulated items into account are highly recommended.</p><p><strong>Conclusions: </strong>The German SPWB 18-item version shows comparable psychometric properties to previous large-scale studies from other countries. The SPWB provides psychological indicators for healthy aging.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"25"},"PeriodicalIF":2.4,"publicationDate":"2025-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11861829/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143492570","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}

{"title":"Development and refinement of the Clinical Global Impression of Improvement for Non-seizure Symptoms measure in Dravet syndrome and Lennox-Gastaut syndrome.","authors":"J Scott Andrews, Drishti Shah, Alise Nacson, Tara Symonds, Sophie Hughes, Mahnaz Asgharnejad, Arturo Benitez, Lara Sams","doi":"10.1186/s41687-024-00829-2","DOIUrl":"10.1186/s41687-024-00829-2","url":null,"abstract":"<p><strong>Background: </strong>Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS) are rare, severe, childhood-onset developmental and epileptic encephalopathies characterized by treatment-resistant epilepsy and varying intellectual disability levels. Clinical outcome assessments (COAs) describe how patients feel, function, or survive, thus providing valuable information on a therapy's efficacy and impact. Individuals with DS or LGS are heterogeneous, and many have limited verbal abilities and intellectual disability. Existing epilepsy-specific COA measures are unsuitable for DS and LGS clinical trials as many items demonstrate floor effects in these populations. As patients often cannot self-report symptoms, caregiver feedback on the measures' relevance and understandability is critical when developing COAs to ensure their suitability for the intended population, and that caregivers can help clinicians complete the measures when necessary.</p><p><strong>Methodology: </strong>We aimed to develop a novel clinician-reported outcomes measure, to be completed in consultation with caregivers at clinic visits, to assess non-seizure symptoms in individuals with DS or LGS using a Clinical Global Impression of Improvement (CGI-I) approach: the CGI-I Non-seizure Symptoms measure. A 13-item initial draft measure was reviewed by experts in a three-round Delphi panel to confirm each item's relevance and refine descriptions, reduce overlap, and limit respondent burden.</p><p><strong>Results: </strong>Following panel review, three items reached consensus (≥70% agreement of no revision required) and were included in the final measure: communication, alertness, and disruptive behaviors. To ensure caregivers can help clinicians complete the measure, and to establish levels of change in each item domain considered meaningful from their perspective, the three-item measure was cognitively debriefed with caregivers of individuals with DS or LGS. Caregivers showed that each item was understandable by describing their child using the descriptions provided in the measure and reported that items were relevant or important to assess in DS or LGS. Most caregivers reported that even a minimal change to their child's condition in each domain would be meaningful to them and their child.</p><p><strong>Conclusions: </strong>This CGI-I Non-seizure Symptoms measure represents relevant non-seizure outcomes considered important to individuals with DS or LGS and their families. The systematic development and refinement approach presented here supports its use in DS and LGS clinical trials.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"24"},"PeriodicalIF":2.4,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11845656/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469480","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}

{"title":"The evaluation of clinical outcomes assessments and digital health technologies in clinical trials for obesity.","authors":"Iris A Goetz, Carolyn Sutter, Traci Abraham, Chisom Kanu, Kristina S Boye, Tara Symonds","doi":"10.1186/s41687-025-00841-0","DOIUrl":"10.1186/s41687-025-00841-0","url":null,"abstract":"<p><strong>Background: </strong>Clinical trials for obesity have traditionally focused on weight loss and resolution of comorbidities as primary outcomes. However, secondary outcomes, such as the impact of weight reduction on patient experience, like health-related quality of life (HRQoL), have increasingly been recognized as important. Therefore, a review was conducted to determine the Clinical Outcome Assessments (COAs) and Digital Health Technologies (DHTs) used in clinical trials for obesity to assess the patient experience.</p><p><strong>Methods: </strong>Two clinical trial databases (United States & European Union) were reviewed to identify Phase 2-4 clinical trials for obesity (2018-2023). A targeted literature review was also conducted using the OVID database to identify clinical trial for obesity publications which included COAs/DHTs (2010-2023).</p><p><strong>Result: </strong>Trials from the databases (n = 53) and publications (n = 42) were included in data extraction (N = 73). This resulted in identification of 108 COAs, the majority being patient-reported outcome (PRO) measures (n = 83), but also 24 performance outcomes (PerfO) measures, and 1 composite PRO-clinician-reported outcomes (ClinRO) measure, as well as 2 DHTs. The most frequently identified PRO measures were the Short Form 36 and the Impact of Weight on Quality of Life Lite Clinical Trials. Twenty-four PerfO measures were also identified, with the 6-minute walk test being most common. These measures were most often used to construct secondary endpoints, with physical function (PF) being the most frequently specified domain. PRO measures assessing eating-related thoughts/behaviours, physical activity, and disordered eating were also frequently included, although individual measures varied widely across trials.</p><p><strong>Conclusion: </strong>Review of COAs and DHTs in registered clinical trials and publications for obesity found that PRO measures were the most common type of COA used to develop endpoints with current use of DHTs limited. Specifically, the physical function domain of multidimensional patient-reported outcome measures assessing health-related quality of life were often used to construct secondary endpoints. Further work is warranted to assess how the COAs and DHT data collected in clinical trials are viewed by regulators and payers.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"23"},"PeriodicalIF":2.4,"publicationDate":"2025-02-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11842654/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143459688","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}

{"title":"Changes in healthcare engagement during the COVID-19 pandemic.","authors":"McKenzie Lockett, Gisselle C Tamayo, Benjamin D Schalet, Steven P Reise, Rachel Kimerling","doi":"10.1186/s41687-025-00850-z","DOIUrl":"10.1186/s41687-025-00850-z","url":null,"abstract":"<p><strong>Background: </strong>Healthcare engagement, defined as the self-efficacy to enact the behaviors needed to obtain optimal benefit from health services, is an important aspect of healthcare quality. Measuring changes to healthcare engagement is essential to informing current and ongoing adaptations to health service delivery. The objective of the present study was to explore the responsiveness of the recently developed PROMIS^® Healthcare Engagement measure (PHE), a patient-reported outcome, through investigating the impact of COVID and COVID-related healthcare disruptions on healthcare engagement from pre- to peri-pandemic.</p><p><strong>Methods: </strong>Baseline data (2018-2019) were collected via a national mail survey of Veterans receiving VA care. For follow-up data, a subset of participants was randomly selected to be invited to a follow-up survey. Administrative data was used from the VA's Corporate Data Warehouse (CDW). We used mixed effects linear modeling to compare changes in healthcare engagement from baseline to follow-up between Veterans who reported healthcare disruptions and Veterans who did not report healthcare disruptions, adjusting for covariates.</p><p><strong>Results: </strong>From baseline to follow-up, healthcare engagement scores increased on average by 2.84 points. Compared to Veterans who reported no disruptions, Veterans who experienced COVID-related healthcare disruptions demonstrated greater decreases to healthcare engagement (difference scores ≥ - 1.98, ps ≤ 0.002) Further, Veterans with more healthcare disruptions showed greater decreases in healthcare engagement relative to those with fewer healthcare disruptions, such that Veterans with 2 healthcare disruptions (difference score = -4.20) significantly differed from Veterans reporting only 1 healthcare disruption, and Veterans reporting 3 or more disruptions (difference score = -3.75) significantly differed from those with 2 disruptions.</p><p><strong>Conclusion: </strong>Our results provide preliminary evidence of the PHE's responsiveness through demonstrating that environmental factors, such as pandemic-related factors, influence healthcare engagement. The COVID-19 pandemic had a complex effect on healthcare engagement, with healthcare engagement scores increasing overall during the pandemic but Veterans reporting COVID-related healthcare disruptions showing decreased changes in healthcare engagement. These findings support the utility of the PHE as a measure of healthcare engagement.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"21"},"PeriodicalIF":2.4,"publicationDate":"2025-02-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11842638/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143459686","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}