Journal of Patient-Reported Outcomes最新文献

{"title":"Assessing signs and impacts of achondroplasia: psychometric evaluation of the Achondroplasia Child Experience Measures.","authors":"Meryl Brod, Lori McLeod, Alden Smith","doi":"10.1186/s41687-026-01123-z","DOIUrl":"10.1186/s41687-026-01123-z","url":null,"abstract":"<p><strong>Background: </strong>Achondroplasia, although rare, is the most common genetic form of skeletal dysplasia and is associated with a wide range of clinical manifestations and complications throughout the body. This study evaluated the psychometric measurement properties of the Achondroplasia Child Experience Measures (ACEMs), which were previously conceptually developed as condition-specific, observer-reported outcome measures to assess the signs (ACEM-OSM) and impacts (ACEM-Impact) of achondroplasia in children aged 2 to < 12 years.</p><p><strong>Methodology: </strong>Data for the psychometric evaluation were from a non-interventional, observational study (N = 200 (impacts) and N = 148 (signs)) and a phase 2, multicenter, double-blind, randomized, placebo-controlled, dose escalation interventional trial (N = 57) of navepegritide (TransCon CNP) administered once weekly. The larger observational study sample size allowed for evaluation of distributional properties, test-retest reliability, and construct validity. Trial data was analyzed to confirm reliability and validity findings and evaluate responsiveness.</p><p><strong>Results: </strong>Factor analysis and qualitative results identified six domains for the ACEM-Impact and one domain for the ACEM-OSM. The psychometric properties of both measures were found to be acceptable for reliability and validity for the intended use. An 8-item ACEM-OSM and a 25-item ACEM-Impact were finalized.</p><p><strong>Conclusions: </strong>The ACEMs are reliable and valid measures of the signs and impacts of achondroplasia on children. Incorporation of these measures in clinical and research settings can aid in assessing new treatments and improve our understanding of the experience of those living with achondroplasia.</p><p><strong>Trial registration: </strong>National Institutes of Health Clinicaltrials.gov (ID NCT04085523) and European Union Drug Regulating Authorities Clinical Trials database (EudraCT 2019-002754-22).</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13534396/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148279166","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 Angioedema Quality of Life Questionnaire (AE-QoL) for hereditary angioedema.","authors":"Alexandra J Feld, Martha Bayliss, Jakob B Bjorner, Regina Rendas-Baum, Cary Thurm, Aaron Yarlas","doi":"10.1186/s41687-026-01128-8","DOIUrl":"10.1186/s41687-026-01128-8","url":null,"abstract":"<p><strong>Background: </strong>Psychometric validation of the Angioedema Quality of Life Questionnaire (AE-QoL) was conducted to determine its suitability for assessing health-related quality of life (HRQoL) in patients with hereditary angioedema (HAE).</p><p><strong>Methodology: </strong>Data were analyzed from 90 participants with HAE in OASIS-HAE (NCT05139810), a randomized, double-blind, placebo-controlled phase 3 study of donidalorsen (DAWNZERA™). Psychometric validation, assessed by post hoc analyses on scores at Baseline and Week 24 visits, included internal consistency reliability, structural and construct validity (convergent, criterion, and known-groups validity), and responsiveness.</p><p><strong>Results: </strong>Confirmatory factor analysis supported the 17-item AE-QoL measurement model (comparative fit index [CFI], Tucker-Lewis index [TLI], and standardized root mean square residual [SRMR] met thresholds). Internal consistency reliability was strong for the total, functioning, fatigue/mood, and fears/shame domains (Cronbach's ⍺: 0.81-0.97; McDonald's ⍵: 0.86-0.98), but weaker for the 2-item nutrition domain (Cronbach's ⍺: 0.65-0.75; McDonald's ⍵: 0.64-0.75). At Week 24, AE-QoL total, functioning, and fears/shame scores showed convergent validity with the 28-day Angioedema Activity Score (AAS-28) (nr = 0.51, 0.73, and 0.51, respectively) and with the Angioedema Control Test (AECT) (r=-0.77, -0.89, and - 0.70, respectively). Criterion validity was supported by moderate-to-strong correlations with HAE attack rate at Week 24 (total: r = 0.65; domains: r = 0.55-0.78, excluding fatigue/mood). Known-groups validity was demonstrated by significant differences in AE-QoL scores between patients with poor- versus well-controlled disease based on AECT score at Baseline and Week 24 (all p < 0.05, Cohen's d effect size [ES] range: 0.63-3.65). AE-QoL total, functioning, and fears/shame scores were sensitive to changes in disease activity, with correlations' absolute values for changes in score from Baseline to Week 24 exceeding 0.30 for AAS-28 and 0.39 for AECT, excluding fatigue/mood and nutrition domains. AE-QoL change scores for total, functioning, fears/shame, and nutrition domains effectively differentiated between subgroups with varying reductions in HAE attack frequency (all p < 0.02, ES range: 0.34-1.42).</p><p><strong>Conclusions: </strong>The AE-QoL demonstrated strong reliability, validity, and ability to detect change, supporting its use as an important patient-reported outcome measure for evaluating HRQoL in patients with HAE.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13526750/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148279157","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":"Test-retest reliability and measurement error of the pain interference questionnaire for cerebral palsy and the fear of pain questionnaire adapted for cerebral palsy.","authors":"Meredith Grace Smith, Nadine Smith, Georgia McKenzie, Adrienne Harvey","doi":"10.1186/s41687-026-01129-7","DOIUrl":"10.1186/s41687-026-01129-7","url":null,"abstract":"<p><strong>Background: </strong>The Pain Interference Questionnaire for Cerebral Palsy (PIQ-CP) and Fear of Pain Questionnaire adapted for Cerebral Palsy (FOPQ-CP) are two patient-reported outcome measures (PROMs) developed and validated for children and young people with cerebral palsy and chronic pain, with specific adaptations to improve self-report opportunity. Test-retest reliability is an important psychometric property to ensure PROMs are used accurately to assess change in intervention and longitudinal studies. This study aimed to determine the test-retest reliability of the PIQ-CP and FOPQ-CP in children and young people with cerebral palsy.</p><p><strong>Methodology: </strong>Children and young people with CP aged 5-30 years with a history of ongoing pain were recruited from four Australian sites within a larger cross-sectional study. Participants completed the PIQ-CP or FOPQ-CP on two occasions 2-4 weeks apart. Test-retest reliability and measurement error were assessed using intraclass correlation coefficients (ICC absolute agreement), standard error of measurement (SEM) and smallest detectable change (SDC).</p><p><strong>Results: </strong>Test-retest reliability was moderate for the FOPQ-CP (Pain-related fear (subscale 1): ICC = 0.74 [0.58-0.85], SEM = 2.12, SDC = 5.88; n = 44; Pain-related avoidance (subscale 2): ICC = 0.62 [0.40-0.77], SEM = 4.07, SDC = 11.27; n = 44) and for the Pain Interference Questionnaire - Cerebral Palsy (PIQ-CP) (Pain interference: ICC = 0.71 [0.53-0.83], SEM = 6.29, SDC = 17.43; n = 45). The mean interval between assessments was 26.8 days.</p><p><strong>Conclusions: </strong>The PIQ-CP and FOPQ-CP have demonstrated sufficient test-retest reliability for children and young people with cerebral palsy, including for those with diverse abilities. They can now be used in clinical and research settings to prioritise self-reported pain interference and pain-related fear/avoidance in intervention studies.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13526730/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148273229","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 MyCommunication-Children: an item bank for measuring communicative participation in children with speech, language, voice disorders or hearing loss.","authors":"Eline Alons, Margreet Roelien Luinge, Ellen Gerrits, Nicole Ter Wal, Lizet Van Ewijk, Benjamin Schalet, Caroline Barbara Terwee","doi":"10.1186/s41687-026-01118-w","DOIUrl":"10.1186/s41687-026-01118-w","url":null,"abstract":"<p><strong>Background: </strong>Communicative participation is the most important outcome of speech and language therapy. However, there are no instruments to measure communicative participation in children. This paper focuses on assessing the psychometric properties of MyCommunication-Children, an item bank designed to measure communicative participation in children with speech, language, or voice disorders, as well as hearing loss.</p><p><strong>Methodology: </strong>A total of 310 children with communication difficulties participated in the study. They completed the full item pool of 49 items, along with three comparator questionnaires: the PROMIS® Pediatric Peer Relationships and two single items measuring communication and communicative participation. Psychometric evaluation focused on structural validity, construct validity, and reliability.</p><p><strong>Results: </strong>Seventeen of the 49 items were removed through systematic item reduction. Confirmatory factor analysis (CFA) and bifactor modeling supported sufficient unidimensionality, indicating that communicative participation can be reliably measured as a single construct. Moderate correlations with related constructs (e.g., communication, communicative participation, and peer relationships) further supported the construct validity of MyCommunication-Children. Two short forms were developed for different purposes: a 10-item version measuring communicative participation across all contexts, and a 9-item version measuring communicative participation within the school context. Reliability analyses showed high reliability for the full item bank and sufficient reliability for both short forms.</p><p><strong>Conclusion: </strong>The results provide sufficient evidence to support the validity and reliability of the MyCommunication-Children instrument for measuring communicative participation from the perspective of children with communication difficulties.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13518642/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148266458","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":"Insomnia symptoms in women and men after percutaneous coronary intervention - a prospective multicentre cohort study.","authors":"Aase Marie Aurbakken Rusten, Anders Broström, Tone M Norekvål, Heather D Hadjistavropoulos, Laila Haugsdal, Signe Stelling Risom, Tore Wentzel-Larsen, Trond Røed Pettersen","doi":"10.1186/s41687-026-01122-0","DOIUrl":"10.1186/s41687-026-01122-0","url":null,"abstract":"<p><strong>Aims: </strong>Insomnia is an independent risk factor for coronary artery disease (CAD). Persistent sleep difficulties after percutaneous coronary intervention (PCI) may hinder recovery, however, studies investigating factors contributing to insomnia in a longitudinal perspective are scarce. Therefore, we aimed to describe and determine: (i) the prevalence of insomnia symptoms in women and men with CAD after PCI; (ii) changes in insomnia symptoms scores over time and (iii) the association between insomnia symptoms, self-reported health status and individual factors 2-, 6- and 12 months post-PCI.</p><p><strong>Methods and results: </strong>Large-scale, prospective, multicentre cohort study on patients after PCI (N = 3,417). Patient-reported outcomes for all included patients were collected during index hospitalization after PCI prior to hospital discharge and 2-, 6-, and 12-months post-PCI (T0-T3 respectively). Insomnia symptoms were assessed with the Minimal Insomnia Symptom Scale, and self-reported health status with RAND-12 and the Seattle Angina Questionnaire. Clinical characteristics were collected from The Norwegian Registry of Invasive Cardiology and patients' medical records. The prevalence of insomnia symptoms was high (women 47% vs. men 28%) at T0 (p < 0.001) and remained at similar levels (T1-T3). Reduced mental health in men (p < 0.001, T1, T2 and T3) and women (p = 0.002 (T1), p = 0.005 (T2) and p = 0.040 (T3)) and physical health in women (p = 0.032 (T2) and p = 0.016 (T3)) were significantly associated with more severe insomnia symptoms. Moreover, insomnia symptoms at previous timepoints were associated with insomnia symptoms at later timepoints for both sexes (p < 0.001 for all comparisons).</p><p><strong>Conclusion: </strong>Insomnia symptoms are highly prevalent following PCI, particularly among women, persisting over time, and related to poorer mental health in men and women. Greater attention should be directed toward early screening and targeted sleep interventions in both sexes.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13507006/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148260017","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":"Evaluation of the comprehensive score for financial toxicity measure in a multicenter cohort of adults with advanced liver disease.","authors":"Chengbo Zeng, Elizabeth S Aby, Grace Bizup, Enya Zhu, Ron D Hays, Maria O Edelen, Nneka N Ufere","doi":"10.1186/s41687-026-01104-2","DOIUrl":"10.1186/s41687-026-01104-2","url":null,"abstract":"<p><strong>Background: </strong>This study evaluates the psychometric properties of the COmprehensive Score for financial Toxicity (COST) measure in a multicenter cohort of patients with advanced liver disease (AdvLD).</p><p><strong>Methods: </strong>Between April 12, 2023, and April 30, 2024, a sample of adults undergoing liver transplantation evaluation was recruited from 13 U.S. transplant centers. We evaluated structural validity using factor analysis and internal consistency reliability using Cronbach's alpha. Construct validity was assessed by examining correlations between the COST measure, health-related unmet social needs, and EQ-5D-5L scores.</p><p><strong>Results: </strong>Among the 459 participants, more than half were male (59%), White (82%), and not Hispanic or Latino (77%). Approximately 44% were unable to work due to illness or disability, and over 44% had an annual household income below $50,000. The COST measure demonstrated suboptimal structural validity based on both one- and two-factor models. Cronbach's alpha for the COST measure was 0.84. The total COST score showed mild to moderate correlations with health-related unmet social needs (r: -0.21 to -0.41) and small correlations with the EQ-5D-5 L visual analogue scale (r = 0.24) and pattern scores (r = 0.34).</p><p><strong>Discussion: </strong>Caution may be warranted when applying COST to patients with AdvLD, as suboptimal structural and construct validity compromise score interpretation and clinical utility. Future studies should systematically review evidence on its psychometric properties and evaluate content validity through cognitive interviews with patients with AdvLD.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13500444/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148253697","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":"Expanding the experimental EuroQol toddler and infant populations (EQ-TIPS) descriptive system: comparing 3-level and 5-level performance for infants and toddlers with chronic conditions.","authors":"Janine Verstraete, Marco Zampoli, Alan Davidson, Marc Hendricks, Helder de Quintal, Yasmin Goga, Jo M Wilmshurst, Alvin Ndondo, Gill Riordan, Ronalda De Lacy, Mignon McCulloch, Deveshni Reddy, Lasse Herdien","doi":"10.1186/s41687-026-01113-1","DOIUrl":"https://doi.org/10.1186/s41687-026-01113-1","url":null,"abstract":"<p><strong>Objectives: </strong>The EuroQol Infant and Toddlers Populations (EQ-TIPS) instrument may support both 3-level and 5-level versions, mirroring the structure of the EuroQol Adult and Youth descriptive systems. This study compared the performance of the experimental version 2.0 EQ-TIPS-3L (3 L) with EQ-TIPS-5L (5L) in children 0-4 years living with a health condition.</p><p><strong>Methods: </strong>Caregivers of children were recruited from specialist outpatient clinics in South Africa. The feasibility of EQ-TIPS-5L and EQ-TIPS-3L was compared using the absolute reduction in the ceiling effect (111111). Discriminatory power was evaluated with Shannon's H' and J' index for absolute and relative informativity. The redistribution of dimension responses between the 5 L and 3L versions was evaluated for inconsistency, defined as a 5 L response that was two or more levels removed from a 3 L response. Convergent validity of EQ-TIPS dimensions was calculated with Kendall Tau B and Gamma correlations. Known-group severity was calculated for the EQ-TIPS-5 L and EQ-TIPS-3 L LSS scores using severity groupings based on PedsQL total score (≤ 74.2) and EQ VAS (≤ 80).</p><p><strong>Results: </strong>Data from 176 children with a median age of 29 months, and more males (54%) were included. Most respondents were mothers (78%). Children were grouped by disease category: epilepsy (9%), neuromuscular disease (7%), chronic gastrointestinal disease (16%), renal disease (27%) and oncological or haematological diseases (41%). The ceiling effect (111111) decreased minimally by 2% points from the 3L to 5L. Absolute informativity (H') of dimensions improved by 0.096 on the 5L, with retention of the spread of responses for all dimensions. Convergent validity was similar, with strong correlations on paired 3L and 5L dimensions. The 3L and 5L were similarly able to significantly differentiate between known groups based on PedsQL and EQ VAS severity cut-offs.</p><p><strong>Conclusion: </strong>These results indicate that a 5L version of the EQ-TIPS does not influence the ceiling effect in the same way as the Adult and Youth descriptive system. The modest increase in informativity of the EQ-TIPS-5L suggests the potential advantages of expanded levels of reporting, but this requires testing in samples with more frequent reporting of severe health states.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148240314","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}

{"title":"Gaps in patient-reported outcome measures integration into the management of lower urinary tract symptoms attributed to benign prostatic hyperplasia (LUTS/BPH): qualitative insights for implementation strategies.","authors":"Rowida Mohamed, Grace Bardwick, Padraig Carolan, Dacey Maglaque, Pooja Talaty, Francesca R Farina, Abigail R Smith, Alexander P Glaser, James W Griffith","doi":"10.1186/s41687-026-01114-0","DOIUrl":"10.1186/s41687-026-01114-0","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcome measures (PROMs) are commonly used to monitor lower urinary tract symptoms attributed to benign prostatic hyperplasia (LUTS/BPH). However, there is limited evidence on patients' perspectives on integrating PROMs into clinical practice and on best practices to improve their implementation to better meet patient needs. The aim of this study is to explore patients' experiences completing PROMs during routine BPH management, and to develop patient-informed strategies for PROM implementation in urologic care.</p><p><strong>Methodology: </strong>Virtual semi-structured telephone interviews were conducted with English-speaking patients aged 50 years or older with BPH who attended outpatient urology clinics between May and October 2025. Patients were purposively sampled based on the type of treatment received (medical or surgical). Interview data were analyzed using interpretive description. Themes were synthesized inductively, and practical implementation strategies were developed from participants' suggestions.</p><p><strong>Results: </strong>Twenty patients participated (12 received medical treatment and 8 received surgical treatment). Four themes emerged regarding patient perspectives on PROM use in routine care: (1) Perceived benefits-patients viewed PROMs as valuable tools for tracking symptom progression, prompting self-reflection, and facilitating communication among the clinical care team; (2) Questionnaire content-patients questioned the relevance of specific domains, particularly the non-specificity of the PROMIS pain scales as well as mental health, and sexual health items; (3) Perceived barriers-participants criticized the excessive volume of questionnaires; and (4) Considerations for PROM Integration-participants emphasized the importance of visible follow-up actions based on PROM results. Practical recommendations for PROM integration in routine clinical practice included: (1) enhancing patient understanding of PROMs by providing a brief rationale prior to survey administration; (2) implementing a patient-preference PROM workflow in the electronic health record (EHR); and (3) providing tangible actions based on PROM results, such as summarizing scores in plain language and incorporating results into discussions during visits.</p><p><strong>Conclusions: </strong>This study provides patient-informed insights into the implementation of a broad PROM battery in LUTS/BPH care. Participants emphasized that PROMs are more acceptable when their purpose is clearly explained and when responses are visibly discussed or acted upon in care. Future research should examine how these patient-informed strategies can be operationalized within clinical workflows and integrated with clinician, administrator, and EHR perspectives to support sustainable PROM use in routine practice.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13486413/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148228723","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":"Translation and cultural adaptation of the health literacy questionnaire (HLQ) in Morocco.","authors":"Karima Boumendil, Younes Iderdar, Nadia Al Wachami, Maryem Arraji, Salwa Najmi, Melanie Hawkins, Richard Osborne, Mohamed Chahboune","doi":"10.1186/s41687-026-01111-3","DOIUrl":"10.1186/s41687-026-01111-3","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Health literacy is an established determinant of health and a key tool in the development of public health interventions. It plays an important role in improving the health and equity of individuals and populations. The Health Literacy Questionnaire (HLQ) is a widely used multidimensional instrument designed to assess various domains of health literacy across diverse populations. However, no culturally and linguistically adapted version of the HLQ is currently available for the Moroccan context, where Moroccan Arabic (Darija) is the primary language of everyday communication, including interactions with healthcare professionals. Therefore, the objective of this study was to carry out the socio-cultural and linguistic adaptation of the HLQ into Darija.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The HLQ was culturally and linguistically adapted for Morocco through a collaborative process with the HLQ developers, community members, healthcare professionals, and the project team from the Higher Institute of Health Sciences (ISSS). Forward and backward translation and cognitive interviews with 28 primary healthcare users recruited from two Moroccan provinces (Kenitra and Settat) maximized that each item reflected its intended meaning. Data were analyzed using thematic analysis to refine the adapted version for the Moroccan context.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The 28 participants (71.4% women) were aged 18 to 70, with diverse educational backgrounds and resided in both urban and rural areas. Of the 44 translated items, 19 (43%) required further linguistic or cultural adaptation for Darija speakers (Moroccan Arabic dialect). Participants generally understood and responded to the items per each item's intent, but qualitative analysis highlighted important nuances. A marked dependence on medical authority appeared to limit participants' ability to manage their own health and was associated with persistent difficulties navigating the healthcare system and critically appraising health information. In contrast, items related to social support were more readily understood, highlighting the central role of family networks. Collectively, these findings underscore the interplay between cultural norms and structural barriers in shaping perceptions of health literacy in Morocco.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;The cognitive and cultural adaptation of the HLQ into Moroccan Darija supported the relevance of the nine scales and provided insight into locally grounded conceptions of health. This process highlights the importance of a participatory and context-sensitive approach to achieving conceptual fidelity and cultural appropriateness. However, it should be emphasized that this study represents an initial yet essential step in the overall validation process. While the adapted Darija version of the HLQ cannot yet be considered a fully validated instrument for use in the general population, it provides a robust foundation for subsequent ps","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13486425/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148219959","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":"Concept elicitation and development of a patient-centric conceptual disease model in chronic pruritus of unknown origin.","authors":"Michael Acquadro, Efstathios Zikos, Carla Dias Barbosa, Karen Bailey, Ariane Dubost-Brama, Eilish McCann, Ashish Bansal, Donia Bahloul, Ella Brookes","doi":"10.1186/s41687-026-01092-3","DOIUrl":"10.1186/s41687-026-01092-3","url":null,"abstract":"<p><strong>Background: </strong>In some cases of chronic pruritus, no identifiable primary cause can be found, whether dermatologic, systemic, neurologic, or psychogenic. In such cases, the disease is referred to as CPUO. To date, little qualitative research has been conducted to understand patient perspectives and a patient-centered conceptual disease model (CDM) for CPUO is lacking. The aims of this study were: to explore the signs, symptoms, and impacts that patients associate with CPUO; and to use these qualitative findings to develop a conceptual disease model (CDM).</p><p><strong>Methodology: </strong>Telephone or web-based semi-structured qualitative interviews were conducted with American adults ≥ 18 years old with a clinician diagnosis of CPUO. Participants were identified at five US clinical sites and interviewed between November 2022 and September 2023. Their interview transcripts were coded using ATLAS.ti, and analyzed to determine the main signs, symptoms, and quality of life impacts of CPUO. Health status over the past month was self-rated.</p><p><strong>Results: </strong>The 20 participants were predominantly female (70%), and White (50%) or Asian (40%). Their mean (SD) age was 42.7 (22.4) years. Participants were generally single (65%), employed (65%), and in good (70%) to very good health (15%). All participants reported itch. Other common symptoms included raw skin (85%), stinging (70%), burning (70%), and dry or rough skin (70%). Participants declared itch (55%) to be the worst symptom. In terms of domains impacted, participants with CPUO frequently cited day-to-day activities (90%), sleep (80%), and work or school (70%). Participants reported the domain on which CPUO had the worst impact was sleep (59%). A patient-centric CDM was developed based on these findings.</p><p><strong>Conclusions: </strong>This first non-interventional qualitative study of adults with CPUO has identified, described, and substantiated the symptoms and impacts of CPUO, which will help define key concepts for patients with CPUO. Itch was the disease-defining symptom of CPUO, and sleep disturbance was its main impact. These and other findings could help physicians make informed clinical decisions about CPUO, and help researchers design CPUO studies with appropriate endpoints.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13486439/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148219939","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}