Journal of Patient-Reported Outcomes最新文献

{"title":"Internal consistency and structural validity of the parent-report preschool (2-4 years) Strengths and Difficulties Questionnaire in 1-year-old children.","authors":"Sarah L Blower, Kate E Mooney, Nicole Gridley, Fionnuala Larkin, Tracey J Bywater, G J Melendez-Torres","doi":"10.1186/s41687-025-00905-1","DOIUrl":"10.1186/s41687-025-00905-1","url":null,"abstract":"<p><strong>Background: </strong>Prevention and early intervention are key to addressing poor child mental health. Systematic reviews have highlighted a lack of brief, valid and reliable outcome measures that can be implemented in both research and practice to assess social, emotional and behavioural outcomes in the early years. The Preschool Strengths and Difficulties Questionnaire (2-4 years) is a promising candidate to fill this gap, but the measurement properties of this tool are not yet known in very young children.</p><p><strong>Methods: </strong>A secondary data analysis of two clinical trial datasets was conducted to examine the internal consistency reliability and structural validity of the parent-report English preschool version of the Strengths and Difficulties Questionnaire in a sample of 505 infants with mean average age of 18 months (SD .81). The measure was designed for children aged 2-4 years and was not modified prior to use with 1-year-olds in this study. Structural validity was examined in two Confirmatory Factor Analyses (CFA) testing two-factor and five-factor models (representing factor structures proposed by the developers of SDQ), and McDonald's coefficient Omega was estimated for each subscale with values > .70 considered acceptable.</p><p><strong>Results: </strong>The model fit values for the two-factor model demonstrated a poor fit to the data (X² = 626.067(151) = p < .001, CFI = 0.612, RMSEA = 0.079 [90% CI .073 to .085], SRMR = .077) and the omega value was below acceptable at ω = .57 for the internalising subscale and ω = .76 for the externalising subscale. The five-factor model also demonstrated a poor fit to the data (X² = 836.813(242) = p < .001, CFI = 0.676, RMSEA = 0.070 [90% CI .065 to .075], SRMR = .081). Omega values were below acceptable for three out of five subscales.</p><p><strong>Discussion: </strong>We concluded that the measure has poor internal consistency and lacks structural validity in this very young age group. Further research to adapt the SDQ in order to improve content and face validity is recommended prior to any further psychometric analyses with this very young age group. The paucity of robust and practical outcome measures of early social, emotional and behavioural poses significant challenges to the early identification of need and evaluation of interventions.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"72"},"PeriodicalIF":2.4,"publicationDate":"2025-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12185824/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144477140","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 properties of patient-reported outcome measures to assess premenstrual syndrome/premenstrual dysphoric disorder in japanese: a systematic review using the COSMIN methodology.","authors":"Kaori Tsuyuki, Miho Egawa, Takuma Ohsuga, Yumie Ikeda, Yoshitake Takebayashi, Hideki Sato, Masaki Mandai","doi":"10.1186/s41687-025-00910-4","DOIUrl":"10.1186/s41687-025-00910-4","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcome measures (PROMs) are important for assessing premenstrual syndrome (PMS) and premenstrual dysphoric disorder (PMDD) to effectively capture subjective symptom burden and evaluate treatment effectiveness in clinical and research settings. This systematic review evaluated the psychometric properties of PROMs used to assess PMS/PMDD in Japan.</p><p><strong>Methodology: </strong>A systematic literature search was conducted in the MEDLINE, CINAHL, Cochrane Library, and Ichushi-Web databases. The COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology was used to assess the methodological quality and measurement properties of the included PROMs.</p><p><strong>Results: </strong>A total of 13 studies that evaluated 12 versions of 11 unique PROMs were included. PROMs were categorized as recall-based (n = 9, 69%) or daily recording scales (n = 4, 31%). The structural validity and internal consistency were relatively well evaluated for most scales. However, evidence was limited for other measurement properties such as reliability, criterion validity, and construct validity. None of the scales reported all psychometric properties outlined by COSMIN. The New Short-Form of the Premenstrual Symptoms Questionnaire and the Japanese version of the Daily Record of Severity of Problems demonstrated sufficient structural validity and internal consistency, although the quality of evidence for other properties was indeterminate.</p><p><strong>Conclusions: </strong>Although some PROMs demonstrated promising psychometric properties, further validation studies are required for most scales. The development of innovative scales with robust measurement properties is essential for advancing the assessment of PMS/PMDD in Japanese clinical and research settings. Careful consideration of the characteristics of each PROM is necessary when selecting instruments for specific purposes.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"71"},"PeriodicalIF":2.4,"publicationDate":"2025-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12181441/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144334059","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 of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains.","authors":"Maike G Sweegers, Esther de Jongh, Christopher Bedding, Emma Nicklin, Daniela Doege, Sara Alfieri, Laura Gangeri, Bianca Scacciati, Augusto Caraceni, Cinzia Brunelli, Anne Bredart, Leslye Rojas-Concha, Helle Pappot, Giovanni Apolone, Nanne Bos, Gennaro Ciliberto, Norbert Couespel, Montse Ferrer, Stein Kaasa, Claudio Lombardo, Ricardo Pietrobon, Gabriella Pravettoni, Aude Sirven, Hugo Vachon, Mogens Groenvold, Maria Alice Franzoi, Galina Velikova, Alexandra Gilbert, Lonneke V van de Poll-Franse","doi":"10.1186/s41687-025-00907-z","DOIUrl":"10.1186/s41687-025-00907-z","url":null,"abstract":"<p><strong>Introduction: </strong>Cancer and cancer treatment have a major impact on health related quality of life (HRQoL). To improve the assessment of HRQoL in patients with cancer and evaluate the impact of policy interventions, the European Oncology Quality of Life (EUonQoL) project aims at developing a digital, patient centred system to assess HRQoL based on evaluations and preferences of cancer patients and survivors: the EUonQoL-kit.</p><p><strong>Method: </strong>Patients across the cancer care continuum, healthcare professionals and researchers from six European countries (Denmark, France, Germany, Italy, The Netherlands and United Kingdom) were asked to rate the importance of 44 pre-selected HRQoL subdomains over a maximum of three Delphi survey rounds. We evaluated the importance of HRQoL subdomains for three target populations: patients undergoing active treatment, cancer survivors and patients receiving palliative care. The results were discussed during a consensus meeting.</p><p><strong>Results: </strong>96 patients and 59 healthcare professionals participated in the Delphi study. After three rounds, consensus was reached for 20 subdomains: ability to work, communication with healthcare professionals, diarrhoea, fatigue, fear of recurrence, global health status, impact of treatment side effects, impact on children/family, insomnia, instrumental activities of daily living, maintaining independence, mobility, nausea, overall quality of life, pain, partner relationship, social activity limitations, social isolation, symptom awareness and uncertain prognosis. The subdomains pain and fear of recurrence were rated as important for all three target populations.</p><p><strong>Conclusion: </strong>Subdomains that were considered important for the assessment of HRQoL in patients with cancer can be summarised into: physical symptoms, mobility & activity, future outlook, social roles & activities, family & relationships, social isolation, self-efficacy, overall HRQoL, and healthcare experience. The importance of the subdomains differed for patients in different phases of the cancer care continuum. These findings were used for the creation of the first version of the EUonQoL-Kit, as a base for its further development.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"70"},"PeriodicalIF":2.4,"publicationDate":"2025-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12179011/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144327118","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":"Validation of the Chinese version of the financial toxicity scale in patients with wet age-related macular degeneration.","authors":"Xiuli Chen, Hong Bian, Zhifeng Wu","doi":"10.1186/s41687-025-00909-x","DOIUrl":"10.1186/s41687-025-00909-x","url":null,"abstract":"<p><strong>Objective: </strong>to confirm the validity of the Comprehensive Score for Financial Toxicity (COST) Scale in Chinese patients with wet age-related macular degeneration.</p><p><strong>Methods: </strong>A tertiary hospital in Wuxi's ophthalmology outpatient clinic treated 217 patients with wet age-related macular degeneration (wAMD) were chosen using the convenience sample approach for a questionnaire survey between October 2023 and February 2024. The Chinese version of the COST and general patient information were included in the survey. Critical ratio analysis and correlation analysis were used to examine the items on the scale. The structural validity of the scale was evaluated using factor analysis, the reliability of the scale was evaluated using Cronbach's α coefficient and retest reliability, and the content validity of the scale was evaluated using the Content Validity Index (CVI).</p><p><strong>Results: </strong>The item analysis results demonstrated that high and low subgroups could be identified using The COST scale's Chinese translation (P < 0.01).; A linear positive correlation was observed between the scores of each item and the scale's overall scores (r values of 0.243 ~ 0.878, P < 0.01), and the scores of factor 1, factor 2, and factor 3 showed a linear positive correlation with the total scores of the scale (accordingly, r values were 0.974, 0.505, and 0.300; P < 0.01). and the scores of each item were linearly and positively correlated with the scores of the common factors to which they belonged (r values of 0.642 to 1.000, P < 0.01). Content validity showed that the I-CVI of each item was 0.857 ~ 1.00, and the S-CVI was 0.974. Three metrics in all, with a cumulative variance contribution rate of 67.739%, were obtained through exploratory factor analysis. Each item's loading on the corresponding dimensions varied from 0.638 to 0.954. The Cronbach's α coefficient for the entire scale was 0.876(95% CI: 0.85-0.899). The reliability of the retest was 0.970 (95% CI: 0.936-0.990).</p><p><strong>Conclusion: </strong>The Chinese version of the COST scale shows potential applicability pending further validation.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"69"},"PeriodicalIF":2.4,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12170966/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303118","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":"Assessment of current patient reported outcome measures for three core outcome domains for single-sided deafness device intervention trials.","authors":"Roulla Katiri, Deborah A Hall, Derek J Hoare, Sandra Smith, Bethany Adams, Kathryn Fackrell, Adele Horobin, Nicholas Hogan, Nóra Buggy, Pádraig T Kitterick","doi":"10.1186/s41687-025-00902-4","DOIUrl":"10.1186/s41687-025-00902-4","url":null,"abstract":"<p><strong>Background: </strong>Outcome reporting in clinical trials of auditory interventions for adults with Single-Sided Deafness (SSD) is inconsistent. The Core Rehabilitation Outcome Set for Single-Sided Deafness (CROSSSD) initiative has recommended three outcome domains as a minimum standard in the design of SSD intervention clinical trials. These are, Spatial orientation, Group conversations in noisy social situations, and Impact on social situations. The study objectives were to (i) understand exactly what the outcome domains mean to SSD experts, and (ii) identify and assess candidate PROMs in terms of how well they measure the experts' conceptualisation of those SSD outcome domains.</p><p><strong>Methodology: </strong>Stakeholder representatives participated in two semi-structured online focus groups. Participants were four adults diagnosed with SSD with experience of auditory interventions, two healthcare professionals working in the field, and one clinical researcher with experience in evaluating interventions. Thematic analysis was used to determine conceptual elements of each domain. COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) initiative recommendations were adopted to assess the relevance and comprehensiveness (content validity) of available candidate instruments.</p><p><strong>Results: </strong>Multiple key concepts were identified for each outcome domain, and presented as a taxonomy. To be acceptable, any measurement instrument would need to achieve good coverage of all concepts in this taxonomy. From the 76 candidate instruments reviewed, none met accepted standards for content validity for SSD. The best performing candidates were (i) Spatial orientation: the Spatial Hearing Questionnaire and two variants of the Speech, Spatial and Qualities scale (SSQ-12, SSQ-18-C), (ii) Group conversations in noisy situations: the Communication Profile for Hearing Impaired (CPHI) questionnaire, SSQ-12, SSQ-18-C, and a multi-item questionnaire developed by Schafer and colleagues, and (iii) Impact on social situations: the CPHI questionnaire.</p><p><strong>Conclusions: </strong>Multi-dimensional outcome domains introduce specific considerations for how they should be measured. Although some candidates instruments had reasonable comprehensiveness, modification is needed to ensure that there is overall greater relevance to the key concepts.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"68"},"PeriodicalIF":2.4,"publicationDate":"2025-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12167737/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303117","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":"Quality of life and climacteric symptoms in women with endometrial cancer: examining the impact of lower limb lymphedema.","authors":"Chia-Chun Li, Ting-Chang Chang, Chi-Wen Chang, Chun-Hsia Huang, Yun-Fang Tsai, Chiu-Lan Huang, Lynn Chen","doi":"10.1186/s41687-025-00895-0","DOIUrl":"10.1186/s41687-025-00895-0","url":null,"abstract":"<p><strong>Background: </strong>Women undergoing treatment for endometrial cancer (EC) often experience climacteric-like symptoms, and some may develop lower limb lymphedema (LLL). LLL can significantly impact women's quality of life (QoL) and exacerbate climacteric symptoms. In this study, we investigated the prevalence of LLL and explored the differences in climacteric symptoms and QoL between women with and without LLL.</p><p><strong>Methods: </strong>A cross-sectional, observational, and comparative study design was employed. Clinical data for 105 women diagnosed with EC were gathered, encompassing demographic details, LLL, climacteric symptoms, and QoL. Instruments used included a demographic-disease survey, the Gynecological Cancer Lymphedema Questionnaire, the Greene Climacteric Scale, and EORTC QLQ-C30 and QLQ-EN24 questionnaires. Descriptive statistics and independent-sample t-tests were utilized for data analysis.</p><p><strong>Results: </strong>In this study, 39% of women with EC experienced LLL, with primary symptoms being aching, heaviness, and swelling. Women with LLL also had significantly more severe climacteric symptoms, including anxiety, depression, and vasomotor issues, and they reported poorer physical, role, emotional, cognitive, and social functioning. Additionally, they faced increased fatigue, pain, dyspnea, and more severe specific symptoms like lymphedema, urological and gastrointestinal issues, body image concerns, back/pelvic pain, and hair loss compared to those without LLL.</p><p><strong>Conclusion: </strong>The findings of this study enhance understanding of the impact of LLL on climacteric symptoms and QoL in women with EC. Health-care professionals, when advising treatment for EC, should inform women about the likelihood of LLL and assist in early management of its symptoms during and after EC treatment.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"66"},"PeriodicalIF":2.4,"publicationDate":"2025-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12165921/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144286697","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":"Validity, reliability, responsiveness and interpretability of the EFAS-DK PROM: an observational cohort study of Danish speaking foot and ankle patients.","authors":"Mick Nielsen, Jens Kurt Johansen, Anna Kathrine Pramming, Jeannette Østergaard Penny","doi":"10.1186/s41687-025-00897-y","DOIUrl":"10.1186/s41687-025-00897-y","url":null,"abstract":"<p><strong>Background: </strong>This study is an external evaluation of the Patient Reported Outcome Measure (PROM) EFAS-DK developed by the European Foot and Ankle Society (EFAS). The evaluation included a test of the psychometric properties.</p><p><strong>Methodology: </strong>From October 2019 to September 2022, 101 patients undergoing elective foot or ankle surgery completed questionnaires (EFAS-DK, SEFAS-DK, EQ-5D-5L) prior to surgery and 6 months post-surgery. A subgroup of patients completed a retest. A foot-healthy group control group was added. Testing covered construct validity with hypothesis testing, floor and ceiling effects, internal consistency (Cronbach's Alpha), test-retest reliability (ICC 2.1), effect size (ES), Standardized Response Mean (SRM), Smallest Detectable Change (SDC) and Minimal Important Change (MIC).</p><p><strong>Results: </strong>Moderate construct validity with 59% confirmed hypothesis. High content validity, no floor ceiling effects. Cronbach's alpha 0.88, ICC 0.93. ES and SRM were both 1.06. SDC 4 and MIC 6. Control group score changes was insignificant.</p><p><strong>Conclusion: </strong>EFAS-DK is a valid, reliable, and responsive foot and ankle PROM score. EFAS-DK can detect a clinically subjective relevant change score of 6 (25% of the total scale), which makes it useful for implementation in the clinic when evaluating patients undergoing foot and ankle surgery. Comparison with a control group showed results that significantly differ from the patients.</p><p><strong>Level of evidence: </strong>IIa prospective observational analytic cohort study.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"67"},"PeriodicalIF":2.4,"publicationDate":"2025-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12165927/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144286698","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 validation of the severity of chronic cough diary, leicester cough questionnaire, and a cough severity visual analogue scale in patients with refractory chronic cough.","authors":"Andrew Trigg, Nathan Clarke, Christoph Gerlinger, Ulrike Krahn, Adam Gater, Claudia Haberland","doi":"10.1186/s41687-025-00888-z","DOIUrl":"10.1186/s41687-025-00888-z","url":null,"abstract":"<p><strong>Background: </strong>Refractory chronic cough (RCC) is commonly reported in primary care and associated with significant morbidity. Patient-reported outcome (PRO) measures are important for evaluating the efficacy of antitussive medications for RCC in clinical trials from the patient-perspective. Psychometric properties of Severity of Chronic Cough Diary (SCCD) Cough Severity and Cough Frequency, Leicester Cough Questionnaire (LCQ) Total and Physical Domain and Cough Severity Visual Analogue Scale (VAS) scores using data from a 12-week Phase 2b trial evaluating the efficacy of eliapixant in patients with RCC (NCT04562155) are reported.</p><p><strong>Results: </strong>Quality of completion for the SCCD, LCQ and Cough Severity VAS across the study was high, no ceiling or floor effects were observed at baseline. Internal consistency for LCQ Total and Physical domain scores was also high (Cronbach's alpha = 0.939 and 0.806, respectively). SCCD Cough Frequency and Cough Severity, LCQ Total and Physical domain, and Cough Severity VAS scores demonstrated strong test-retest reliability (Intraclass correlation coefficient ≥ 0.848) among participants defined as stable between Week 3 and Week 4 according to Patient Global Impression of Severity (PGI-S) ratings and Awake Cough Count readings. Construct validity was supported by known-groups comparisons, with large differences (effect sizes 1.99-4.16) observed between groups categorized according to PGI-S ratings and objective Awake Cough Counts. Ability to detect improvement was supported by large effect sizes (≥0.8) observed for mean changes in SCCD, LCQ and Cough Severity VAS scores from baseline to Week 12 among participants classified as 'improved' according to PGI-S/PGI-C ratings and Awake Cough Counts. Triangulated thresholds (score range) for meaningful within-patient improvement based on anchor-based assessments were -0.82 for SCCD Cough Frequency (0-4), -0.69 for SCCD Cough Severity (0-4), 2.36 for the LCQ Total (3-21), 0.77 for the LCQ Physical (1-7) and -17.73 for the Cough Severity VAS (0-100) scores.</p><p><strong>Conclusion: </strong>Findings support the reliability, validity and responsiveness of the newly developed SCCD Cough Frequency and Severity items as fit-for-purpose PRO measures of cough frequency or severity for use in drug development programs within RCC. The LCQ Total, LCQ Physical Domain and Cough Severity VAS also exhibit acceptable measurement properties for use in this population.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"65"},"PeriodicalIF":2.4,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12158865/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144267455","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":"Participation and quality of life of Nepalese children with visual impairment in comparison with normally sighted peers: a cross sectional comparative study.","authors":"Srijana Adhikari, Ellen Bernadette Maria Elsman, Ruth Marie Antoinette van Nispen, Fleur Van Rens, Manish Poudel, Gerardus Hermanus Maria Bartholomeus van Rens","doi":"10.1186/s41687-025-00893-2","DOIUrl":"10.1186/s41687-025-00893-2","url":null,"abstract":"<p><strong>Background: </strong>Poor vision compromises quality of life and participation in different daily life activities of children such as, sports, leisure time, interactive play and social interaction. The purpose of this cross - sectional study is to investigate participation and quality of life of children with visual impairment (VI) and blindness compared with normally sighted peers.</p><p><strong>Methodology: </strong>Children aged 7-17 years with blindness (n = 100), moderate to severe VI (n = 100) and normal sight (n = 100) completed Nepalese versions of the Participation and activity inventory children and youth (PAI-CY 7-12 and 13-17), L. V. Prasad functional vision questionnaires (LVP-FVQ II) and Pediatric Eye Questionnaires (PedEyeQ 5-11 and 12-17). The measurement properties of PAI -CY was studied. All (sub) scores were compared between three groups. Associations between the severity of VI and outcomes were assessed with age and sex adjusted linear regression analyses.</p><p><strong>Results: </strong>Children with blindness scored worse than children with VI, who scored worse than normally sighted children on the PAI-CY 7-12, the physical functioning subscale of the PAI-CY 13-17 and the LVP-FVQ II(p = < 0.001).However, for the psychosocial functioning subscale of PAI-CY 13-17, children with blindness scored better than children with VI(p = < 0.01). On the PedEyeQ, young children (5-11) with blindness on all subscales, and older children (12-17 years) with blindness on the functional vision subscale scored worse than children with VI(p = < 0.01).Regression models showed that both moderate/severe VI and blindness were significantly associated with worse PAI-CY, LVP-FVQ II, PedEyeQ 5-11 and PedEyeQ 12-17 functional vision subscale scores(p = < 0.01).</p><p><strong>Conclusion: </strong>Younger children with blindness showed worse participation and quality of life compared to children with VI, whereas results for older children showed a mixed pattern with children with blindness showing better participation in psychosocial domain. Appropriate low vision rehabilitation interventions are needed for children with VI and blindness to increase their participation and quality of life to the level of their normally sighted peers as far as possible. Future studies could include children who do not attend school and may have worse participation and quality of life than children in our study.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"64"},"PeriodicalIF":2.4,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12141697/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144227014","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":"Stakeholders' perspectives on implementing and integrating patient-reported outcome measures (PROMs) in health systems - insights from Alberta, Canada.","authors":"Fatima Al Sayah, Hilary Short, Arto Ohinmaa, Stafford Dean, Brenda Hubley, Markus Lahtinen, Jeffrey A Johnson","doi":"10.1186/s41687-025-00887-0","DOIUrl":"10.1186/s41687-025-00887-0","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcome measures (PROMs) are valuable tools for evaluating outcomes of healthcare interventions and have been increasingly used in health systems around the world. While PROMs adoption has grown globally, variations exist in their use across the health system. This stakeholder engagement and consultation activity aims to understand factors impacting PROMs adoption, implementation, and utilization, and identify strategies for enhancing utilization of PROMs data within the healthcare system in Alberta, Canada.</p><p><strong>Methodology: </strong>Key stakeholders from various roles were interviewed, including PROMs programs, health system improvement, data analytics, clinical practice, evaluation, health economics, and research, from diverse clinical areas, including cancer, primary care, epilepsy, rehabilitation, arthroplasty, cardiovascular surgery, and rheumatology. Interviews were recorded, transcribed and analyzed using thematic analysis. Results were synthesized using the Consolidated Framework for Implementation Research (CFIR) and Diffusion of Innovation Framework (DOI).</p><p><strong>Results: </strong>A total of 25 interviews, lasting between 45 and 60 minutes, were completed. Factors impacting the adoption, implementation and utilization of PROMs within the Alberta healthcare system included: (1) Intervention characteristics: shared understanding of PROMs, challenges in capturing relevant patient outcomes, standardization and integration of PROMs, modalities of data collection, making PROMs actionable at the patient-clinician level, and interpreting PROMs data; (2) Inner setting: Cultural shift towards patient-centered care, change management and clinician mindset, organizational commitment and support, integration into broader measurement frameworks, access to PROMs data, potential for replication and adaptation, and importance of incentives and requirements; (3) Outer setting: Resource constraints, policy and systemic challenges, focus on value-based care, and responsible use of PROMs data; (4) Characteristics of individuals: Expertise and understanding of PROMs, and stakeholder engagement and education; and (5) Process: Balancing bottom-up and top-down approaches, workflow integration, patient engagement, and continuous evaluation and quality improvement.</p><p><strong>Conclusions: </strong>The study highlights factors influencing PROMs adoption in Alberta, including the need for a unified understanding, workflow integration, and electronic data use. Key strategies involve fostering patient-centered care, ensuring organizational support, addressing resource and policy issues, and providing targeted education. Engaging early adopters and offering incentives can improve PROMs integration and patient outcomes.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"63"},"PeriodicalIF":2.4,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12141181/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144227015","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}