Journal of Patient-Reported Outcomes最新文献

{"title":"Patient perspectives on electronic patient-reported outcome-based symptom management after lung cancer surgery: a qualitative study.","authors":"Yadi Zhang, Xin Gao, Cheng Lei, Hongfan Yu, Yangjun Liu, Xin Shelley Wang, Cecilia Pompili, Yang Pu, Wei Xu, Yaqin Wang, Jia Liao, Xing Wei, Fang Liu, Qiang Li, Qiuling Shi, Wei Dai, Linlin Fan","doi":"10.1186/s41687-026-01083-4","DOIUrl":"10.1186/s41687-026-01083-4","url":null,"abstract":"<p><strong>Background: </strong>Patients frequently experience severe symptoms after lung cancer surgery. Symptom management using electronic patient-reported outcomes (ePRO) can improve postoperative symptom burden, enhance functional status, and reduce complications. This qualitative study aimed to explore patient perspectives on ePRO-based symptom management.</p><p><strong>Methodology: </strong>Patients in a multicentre, randomised controlled trial (CN-PRO-Lung 2) conducted in China were asked to participate in qualitative interviews. In the trial, patients with lung cancer were randomly assigned in a 1:1 ratio to receive postoperative symptom management based on ePRO or usual care. To explore perspectives on the model, semi-structured interviews were conducted with 20 patients in the ePRO group. Data were analysed using descriptive and thematic analyses.</p><p><strong>Results: </strong>The median age of patients was 53.5 years (range: 28-73 years), with 55% being female. Two major themes emerged from the qualitative interviews: patient acceptance and patient-derived recommendations. Patient acceptance included four subthemes: patient satisfaction, daily life disruption and burden, postoperative recovery assistance, and long-term implementation needs. Patients were highly satisfied with the ePRO model and felt it did not increase their burden. They also found it beneficial for recovery and recommended long-term implementation. Patient-derived recommendations included two subthemes: enhancing the ePRO model and improving the system. Patients emphasised the importance of timely doctor feedback, a user-friendly interface, recognisable app icons, and additional self-reporting sections to increase engagement and efficiency.</p><p><strong>Conclusions: </strong>ePRO-based symptom management seems to be acceptable for patients who underwent lung cancer surgery. Future research should focus on optimising the ePRO model and system to better meet patient needs and facilitate its clinical implementation.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13365064/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147976023","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":"Cross-cultural adaptation and psychometric properties of the Vietnamese version of the Lower Extremity Functional Scale (LEFS) in individuals with knee osteoarthritis.","authors":"Van Phat Huynh, Thi Diep Tran, Komsak Sinsurin, Chutima Jalayondeja","doi":"10.1186/s41687-026-01088-z","DOIUrl":"10.1186/s41687-026-01088-z","url":null,"abstract":"<p><strong>Objective: </strong>To translate, cross-culturally adapt, and examine the psychometric properties of the Vietnamese version of the Lower Extremity Functional Scale (LEFS-V) in individuals with knee osteoarthritis (KOA).</p><p><strong>Design: </strong>A cross-sectional study.</p><p><strong>Setting: </strong>Two hospitals and two Catholic convents in Vietnam.</p><p><strong>Participants: </strong>174 Vietnamese individuals aged ≥ 45 years with KOA were diagnosed based on clinical examination using the National Institute for Health and Care Excellence (NICE) criteria.</p><p><strong>Main outcome measures: </strong>Participants completed the baseline assessment and 5-7days retest, which included the LEFS-V, Numerical Pain Rating Scale (NPRS), and Knee Injury and Osteoarthritis Outcome Score (KOOS). Psychometric property testing included content validity (CVI), internal consistency (Cronbach's α), test-retest reliability (ICC _(3,1), standard error of measurement (SEM), minimum detectable change (MDC95), and construct validity. Spearman correlations were used to examine associations with the KOOS subscales and NPRS.</p><p><strong>Results: </strong>Strong content validity with item-CVI from 0.83 to 1.00. LEFS-V demonstrated high internal consistency (Cronbach's α = 0.942) and excellent test-retest reliability (ICC _(3,1) = 0.985; 95% CI: 0.974-0.991), SEM = 1.4 and MDC₉₅ = 3.88. LEFS-V correlated positively with KOOS-Pain (r_s = 0.59), KOOS-Symptoms (r_s = 0.30), KOOS-ADL (r_s = 0.71), KOOS-Sport/Rec (r_s = 0.50), and KOOS-QoL (r_s = 0.18), and negatively with NPRS (r_s = -0.63).</p><p><strong>Conclusion: </strong>The LEFS-V is a reliable and valid scale for assessing lower extremity functional status in Vietnamese individuals with KOA.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13365081/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147976057","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":"Goal attainment scaling in the heart failure and stroke resilience caregiver intervention pilot study.","authors":"Catherine A Clair, Samantha N Curriero, Martha Abshire Saylor","doi":"10.1186/s41687-026-01082-5","DOIUrl":"10.1186/s41687-026-01082-5","url":null,"abstract":"<p><strong>Background: </strong>Caregivers often serve as proxies for patients or inform patient-caregiver dyadic findings in interventions. We conducted a randomized waitlist control pilot of a caregiver support program focused on caregivers (not dyads): Heart Failure and Stroke Resilience Intervention for Caregivers (HEROIC). Goal attainment scaling (GAS) was used to measure goal progress and achievement; this measure is person-centered but has not been used to test prior caregiving interventions.</p><p><strong>Methodology: </strong>HEROIC was tested in a pilot study. Participants were randomized to immediate intervention or waitlist control groups. GAS data was collected at baseline, 12 weeks, and 24 weeks and a final interview to assess feasibility and acceptability was conducted at 24 weeks. Raw GAS data was converted to t-scores. We compared goal achievement for the overall sample, by group assignment (immediate intervention vs. waitlist control), and by goal domain. Two questions in the final interview focused on acceptability and feasibility of GAS were summarized.</p><p><strong>Results: </strong>Fifty caregivers were consented, and 31 completed baseline data collection. Caregivers (n = 31) were on average 58 years old (SD: 11), 84% identified as female and 45% identified as Black. Twenty-six participants completed GAS at 12 weeks, and 19 participants completed GAS at 24 weeks. Twenty-one (80.8%) and 16 (84.2%) caregivers met or exceeded their goal at 12 weeks and 24 weeks respectively. For the immediate intervention group, the mean change in scores pre-post intervention was 19.1 (SD: 9.4), ranging from 0 to 30. For the waitlist control group, the mean change in scores pre-post intervention was 13.8 (SD: 10.6), ranging from 0 to 30. For the immediate intervention group during their maintenance period (12 to 24 weeks), the mean change in scores was 20.9 (SD: 11.4), ranging from 0 to 30. All 19 caregivers were interviewed at 24 weeks and reported that GAS was simple to complete and reported satisfaction with the activity.</p><p><strong>Conclusions: </strong>For clinical trials, GAS may serve as a key outcome and provide rich effectiveness data. While GAS represents investment of time and resources, the approach is valuable. We recommend future research to inform streamlining GAS while maintaining its person-centeredness.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov, NCT03963583, Registered 24 May 2019, https://clinicaltrials.gov/study/NCT03963583?term=Heart%25;20Failure%25;20Resilience%25;20Intervention%25;20for%25;20Caregivers%25;20(HEROIC)%26;rank=1 .</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13357473/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147960533","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":"Patient engagement for quality improvement and knowledge translation in paediatric orthopaedic care - a patient partner led initiative.","authors":"Marisa Wong, Philippa Crerar, Anthony Philip Cooper, Harpreet Chhina","doi":"10.1186/s41687-026-01062-9","DOIUrl":"10.1186/s41687-026-01062-9","url":null,"abstract":"<p><strong>Background: </strong>In healthcare, a shift towards patient-centric models has gained traction, emphasizing patient empowerment. This is exemplified by initiatives such as the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR), which aims to foster a more sustainable and equitable healthcare system, as well as the increased support provided by the Patient-Centered Outcomes Research Institute (PCORI), which supports research that provides useful and reliable healthcare information to users. Despite progress in various healthcare domains, patient-engagement initiatives remain underexplored in paediatric orthopaedic care, highlighting a gap in tailored engagement strategies for this population.</p><p><strong>Methods: </strong>This project took place within the department of orthopaedics at a provincial tertiary care children's hospital. Utilizing patient-partner led focus groups as a collaborative approach, we implemented engagement strategies guided by SPOR principles and informed by patient and caregiver feedback. Small focus groups facilitated meaningful discussions and allowed participants to contribute valuable insights into research, treatment, and knowledge translation (KT).</p><p><strong>Results: </strong>The focus groups identified action items to enhance patient engagement and research collaboration. Initiatives included the development of patient and family directories, patient resources, patient partnerships, patient spotlights on Instagram, and clinic gathering rooms. Co-creating KT materials ensured relevance and accessibility, fostering cooperation between patients, caregivers, and healthcare professionals.</p><p><strong>Conclusions: </strong>This initiative marks a shift towards patient-centric paediatric orthopaedic care, emphasizing inclusivity, support, and collaboration. Patient-partners played a pivotal role in the success of the project, ensuring patient perspectives were central to the planning and execution of initiatives.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13346369/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147942667","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":"Patient-reported outcomes in chronic GVHD: instruments, clinical utility, and survivorship integration.","authors":"Xiaoli Liang, Shiqin Huang, Ruihao Huang, Jia Liu, Fengming Wang, Yao Quan, Lichao Liu, Lingyu Zeng, Yimei Feng, Xiaoqi Wang, Xi Zhang","doi":"10.1186/s41687-026-01080-7","DOIUrl":"10.1186/s41687-026-01080-7","url":null,"abstract":"<p><p>Chronic graft-versus-host disease (cGVHD) is a leading driver of long-term morbidity after allogeneic transplantation. This review synthesizes evidence on patient-reported outcomes (PROs) across organ systems and survivorship domains, appraises psychometrics and minimal clinically important differences (MCIDs), and translates measures into routine care. Validated tools-including the Lee Symptom Scale (LSS), FACT-BMT, SF-36, PROMIS, and pediatric instruments-capture symptom burden and function beyond clinician ratings, and studies have demonstrated associations of some measures with survival, failure-free survival, and non-relapse mortality. Concordance between provider-rated and PRO-defined responses is limited, while PRO changes often track clinically meaningful improvement. We propose an implementation framework and two practical tables mapping measures to organ involvement and use-cases. Key barriers include workflow integration, patient burden, and cross-cultural adaptation-gaps that are pronounced in Chinese cohorts. Embedding PROs in trials and survivorship models can sharpen risk stratification, inform shared decisions, and improve patient-centered outcomes in cGVHD.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13357487/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147942711","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":"Refining a multimedia patient-reported outcomes measure for patients with low literacy.","authors":"Chao Long Azad, Aygul Iskandarova, Caroline Wu, Laura Beres, Albert W Wu, Allan Fong, Aviram Giladi","doi":"10.1186/s41687-026-01081-6","DOIUrl":"10.1186/s41687-026-01081-6","url":null,"abstract":"<p><strong>Background: </strong>Patients with low literacy have difficulty completing patient-reported outcomes measures (PROMs). The Multimedia Adaptation Protocol (MAP) guides the process of adapting traditional PROMs to multimedia versions that patients with low literacy can self-administer. We previously executed the first MAP stage, forward adaptation, to adapt the Patient-Reported Outcomes Measurement Information System Upper Extremity (PROMIS-UE) to a multimedia version (multimedia PROMIS-UE). The goal of this study was to refine the multimedia PROMIS-UE via the next MAP stages, back adaptation and qualitative evaluation, to result in a conceptually-equivalent, user-tested multimedia PROMIS-UE ready for psychometric validation.</p><p><strong>Methodology: </strong>For back adaptation, mixed-literacy and English-speaking participants masked to the PROMIS-UE \"translated\" multimedia components back to text. We compared text back-adaptations to the original PROMIS-UE, identified areas of non-equivalence, and updated the multimedia PROMIS-UE accordingly. For qualitative evaluation, we used an iterative design process to conduct cycles of testing to assess usability and face validity. We performed analyses including memo writing and framework-guided thematic analysis. Findings were synthesized into usability, functionality, or content-related themes that guided ideation workshops focused on identifying solutions.</p><p><strong>Results: </strong>We recruited 11 participants for back adaptation. We identified areas of non-equivalence between the PROMIS-UE and multimedia PROMIS-UE for 85% of the questions, which were addressed in an updated multimedia PROMIS-UE. We conducted two cycles of qualitative evaluation. We recruited 20 patients and identified 16 themes/challenges: animations unused, audio unused, instructions unclear, instructions unused, difficulty starting questionnaire, response audio button misinterpreted, difficulty with incomplete forms, difficulty submitting answers, purpose of avatars unclear, purpose of smiley scale unclear, difficulty differentiating smileys, inaccurate animation, unclear how to select answer, audio button unused or misinterpreted, confusion with scrolling, and incomplete popup window missed. We updated the multimedia PROMIS-UE after each cycle to address each theme.</p><p><strong>Conclusions: </strong>We developed a conceptually-equivalent, user-tested multimedia PROMIS-UE ready to undergo psychometric testing and validation. This work represents an essential intermediary and preparatory phase of PROM development, is analogous to cross-cultural translation phases intentionally positioned prior to psychometric validation, and advances how PROMs can be adapted to a multimedia format. Ultimately, a validated multimedia PROMIS-UE will expand clinicians' and investigators' abilities to capture patient-reported outcomes in low literacy populations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13457818/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147942757","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":"Face validity of the EQ health and wellbeing instrument (EQ-HWB) in Hong Kong.","authors":"Eliza Lai-Yi Wong, Annie Wai-Ling Cheung, Amy Yuen-Kwan Wong, Zhihao Yang","doi":"10.1186/s41687-026-01075-4","DOIUrl":"10.1186/s41687-026-01075-4","url":null,"abstract":"<p><strong>Background: </strong>The EuroQol Health and Wellbeing (EQ-HWB™) measures quality-of-life (QoL) across healthcare and social care settings. Its framework integrates physical, social, and psychological domains, shaped by cultural influences. Despite global validation, evidence supporting its applicability in Asian contexts, particularly in Hong Kong, is limited. This study evaluated the face validity of the Traditional Chinese version of the EQ-HWB among Hong Kong adults, focusing on its conceptual adequacy and comprehensiveness in the local setting.</p><p><strong>Methods: </strong>A qualitative study was conducted between August 2023 and August 2024, 30 participants were recruited through quota sampling stratified by age, sex, and education levels. The sample included healthy individuals, those with chronic conditions, and informal caregivers. Cognitive debriefing interviews using the 'think-aloud' method assessed the comprehensibility, relevance, and appropriateness of the 25-item EQ-HWB. Thematic analysis focused on seven predetermined questions addressing clarity, conceptual meaning, and social desirability.</p><p><strong>Results: </strong>Most EQ-HWB items were well-understood, though linguistic ambiguities (e.g., idioms like \"exhausted\") and overlapping concepts (e.g., \"no support from others\" vs. \"accepted by others\") posed challenges. Participants reported difficulties distinguishing response scales (e.g., \"occasionally\" vs. \"sometimes\") and suggested simplifying examples and refining scales. No social desirability bias was observed, with confidentiality highlighted as essential for honest responses.</p><p><strong>Conclusion: </strong>The EQ-HWB exhibits strong face validity in Hong Kong but requires cultural and linguistic adjustments to improve clarity. Recommendations include revising ambiguous phrasing, clarifying conceptually similar items, and optimizing response options. These refinements will enhance the tool's suitability for local economic evaluations and cross-sectoral wellbeing assessments.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13319299/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147844011","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":"Patient satisfaction following gender affirming facial surgery: a GENDER-Q and gender preoccupation and stability questionnaire study (GPSQ).","authors":"Helia C Hosseini, Thayer J Mukherjee, Paula Flores-Perez, Melanie Vassallo, Jacqueline Ihnat, Sasha Wood, Kevin Hu, Neil Parikh, Omar Allam, Michael Alperovich","doi":"10.1186/s41687-026-01016-1","DOIUrl":"10.1186/s41687-026-01016-1","url":null,"abstract":"<p><strong>Background: </strong>Gender-affirming facial surgery (GAFS) addresses gender dysphoria by aligning facial features with gender identity, with historical emphasis on refining the upper facial third to render patients more attractive and feminine. The GENDER-Q, a novel patient-reported outcome measure (PROM), evaluates aesthetic, functional, and psychosocial outcomes, complementing the Gender Preoccupation and Stability Questionnaire (GPSQ) to assess effects of GAFS in this study.</p><p><strong>Methodology: </strong>Survey data from 86 patients was analyzed using GENDER-Q and GPSQ scores. Higher GENDER-Q scores indicated improved outcomes, whereas lower GPSQ scores reflected reduced gender dysphoria. Pre- and post-operative outcomes were compared using paired and unpaired t-tests. Spearman's correlation coefficients assessed relationships between the parameters assessed.</p><p><strong>Results: </strong>Significant improvements in post-operative GENDER-Q scores were observed across facial features, with upper face appearance (r = 0.54, p = 0.001), jaw (r = 0.49, p = 0.001), and chin (r = 0.48, p = 0.004), showing greatest gains. GPSQ scores decreased significantly (-7.77 ± 1.61, p < 0.001). Pre- to post-operative changes of dysphoria, as measured by the GENDER-Q were associated with overall face (r = 0.62, p < 0.001), upper face (r = 0.64, p < 0.001), and chin (r = 0.51, p = 0.08) score improvement. Furthermore, increased overall facial satisfaction strongly correlated with improvement in satisfaction with the upper face (r = 0.54, p = 0.001), jaw (r = 0.49, p = 0.001), and chin (r = 0.48, p = 0.004).</p><p><strong>Conclusions: </strong>An individualized approach to gender-affirming facial surgery that prioritizes overall facial harmony, rather than isolated subunit changes, improves gender congruence, facial satisfaction, and alleviates gender dysphoria in transgender patients. In addition, this study advocates for the use of tailored PROMs for the transgender population to more precisely capture and quantify the impact of population-specific interventions and conditions such as gender-affirming surgery and gender dysphoria respectively.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315363/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147844036","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":"A generic and adaptable model of developing, implementing, and maintaining patient-reported outcomes in clinical practice - the AmbuFlex model.","authors":"Liv Marit Valen Schougaard, Anne Jessen, Anne Treschow Phillipsen, Anke de Beijer, Camilla Buur Udbye Agesen, Helle Dahl Harbo, Jonas Hermann Schrøder, Kathrine Hønholt Carlson, Katja Kimose Sloth, Lene Bjerre Graakjaer, Louise Pape Larsen, Mette Roost, Nanna Toxvig Sørensen, Regine Grytnes, Sanne Degn Gjørup, Sidse Østergaard Olesen, Birgith Engelst Grove","doi":"10.1186/s41687-026-01076-3","DOIUrl":"10.1186/s41687-026-01076-3","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcomes (PROs) are aspects of health status reported directly by patients. Over the last decade, PROs have been increasingly used in clinical practice. AmbuFlex - Centre for Patient Reported Outcomes is a public-funded organization that develops, implements, and maintains PRO solutions in the Danish healthcare system. Since 2011, a total of 90 specific AmbuFlex PRO solutions have been implemented across diverse patient groups and hospital departments. AmbuFlex' implementation model is based on extensive real-life experience and inspired by theoretical frameworks, such as the Consolidated Framework for Implementation Research, the Medical Research Council's framework of development and evaluation of complex interventions, and the PROTEUS Guide to Implementing PROs in Clinical Practice. In this paper, we describe the AmbuFlex model for developing, implementing, and maintaining PRO solutions in clinical practice.</p><p><strong>Results: </strong>The process outlined in the AmbuFlex model comprises five steps: (1) Clarify PRO rationale, (2) Select PROMs, (3) Design PRO solution, (4) Implement and adjust PRO solution, and (5) Monitor, evaluate and expand PRO solution. Throughout the process, the active involvement of relevant stakeholders is essential. A PRO facilitator manages this iterative process, and a series of meetings are held with a clinical working group based on specific contextualized requirements.</p><p><strong>Conclusion: </strong>The AmbuFlex model is a generic and adaptable model, that applies to the development, implementation, and maintenance of PRO solutions regardless of purpose, target group, clinical context, and stakeholders involved. Thus, the model is useful for developing and implementing sustainable PRO solutions in the healthcare system.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315060/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147821618","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":"Evaluating different scoring algorithms to assess communication ability for individuals living with Angelman syndrome: the Observer-Reported Communication Ability (ORCA) measure.","authors":"Bryce B Reeve, Li Lin, Abigail Rader, Nicole Lucas, Kelly L Gordon, Molly McFatrich, Allyson Berent, Harrison N Jones","doi":"10.1186/s41687-026-01072-7","DOIUrl":"10.1186/s41687-026-01072-7","url":null,"abstract":"<p><strong>Background: </strong>Many neurodevelopmental disorders are associated with significantly impaired communication that impacts the individuals and their families' daily activities. The objective of this study is to evaluate the effectiveness of multiple scoring algorithms for the Observer-Reported Communication Ability (ORCA) measure in assessing communication abilities in individuals living with Angelman syndrome and other neurodevelopmental disorders with severe language impairments.</p><p><strong>Methods: </strong>This secondary data analysis used caregiver-reported data from the ORCA validation study (n = 249) and the Angelman Syndrome Natural History Study (n = 165). Performance of the scoring algorithms was evaluated based on item response theory information functions, the percentage of scores at the floor and ceiling, and the Pearson correlation of scores between the ORCA measure and the Communication and Symbolic Behaviors Scale (CSBS).</p><p><strong>Results: </strong>The ORCA measure's scoring algorithms, which include both emerging and mastery levels of communication behaviors (\"Emerging & Mastery\"), captured lower levels of ability with greater precision than the algorithm that only assesses mastery levels of behaviors. For overall communication ability in the validation study, the Emerging & Mastery algorithm had floor and ceiling effects of 0.4% each, while the Mastery algorithm had effects of 1.2% and 0.0%, respectively. Both ORCA scoring algorithms for overall communication had strong correlations with the CSBS (r = 0.85 and 0.83, respectively). Similar results were found when scoring ability at the expressive, receptive, and pragmatic (social) communication levels.</p><p><strong>Conclusions: </strong>Selection of the appropriate ORCA scoring algorithm for use in research studies should be based on the communication concept of interest for the intervention being evaluated and the characteristics of the neurodevelopmental disorder population being assessed. This study reinforces the need for robust assessment tools that can adapt to the unique challenges of rare disease populations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13287182/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147821647","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}