Quality of Life ResearchPub Date : 2025-06-01Epub Date: 2025-02-28DOI: 10.1007/s11136-025-03922-1
Thiago S Torres, Pooja T Saha, Laura Smeaton, Chanelle Wimbish, Dimas Alexandre Kliemann, Anchalee Avihingsanon, Cissy Kityo, Jaclyn Ann Bennet, Marije Van Schalkwyk, Benjamin Linas, Estevao Portela Nunes, Gregory K Robbins, David Wyles, Susanna Naggie, Mark Sulkowski, Sandra Wagner Cardoso, Sunil Solomon
{"title":"Impact of a minimal monitoring HCV treatment approach on Health-Related Quality of Life.","authors":"Thiago S Torres, Pooja T Saha, Laura Smeaton, Chanelle Wimbish, Dimas Alexandre Kliemann, Anchalee Avihingsanon, Cissy Kityo, Jaclyn Ann Bennet, Marije Van Schalkwyk, Benjamin Linas, Estevao Portela Nunes, Gregory K Robbins, David Wyles, Susanna Naggie, Mark Sulkowski, Sandra Wagner Cardoso, Sunil Solomon","doi":"10.1007/s11136-025-03922-1","DOIUrl":"10.1007/s11136-025-03922-1","url":null,"abstract":"<p><strong>Background: </strong>Direct-acting antivirals (DAA) are highly effective for the management of HCV disease. This study aims to evaluate changes in health-related quality of life (HQoL) among people with HCV who were treated with DAAs using a minimal monitoring (MINMON) approach.</p><p><strong>Methods: </strong>ACTG A5360 was a multicenter, international (Brazil, South Africa, Thailand, Uganda, and USA) trial to assess the feasibility and efficacy of MINMON approach in people with HCV. We measured HQoL using EQ-5D-3L at baseline, sustained virological evaluation visit, week 48 and week 72, and described using EQ-5D summary index (ranges:0-1) and visual analog scale (VAS) score (ranges 0-100). We used paired T-tests to evaluate the change in EQ-5D summary and multivariable linear regression for changes in VAS scores.</p><p><strong>Results: </strong>Overall, 394 individuals were included; most did not have cirrhosis (360; 91%) or problematic alcohol use (278; 71%). We found HQoL improvements for participants from Brazil and Thailand, but not for the USA. Participants reported high rates of pain/discomfort and anxiety/depression, with decreases over time only for Brazil. Factors associated with larger improvements in VAS scores included: cirrhosis at baseline, and non-use or problematic use of other substances (apart from tobacco/marijuana) compared to non-problematic use.</p><p><strong>Conclusion: </strong>We found HQoL improvements among people with HCV following DAA treatment with variability across countries. Our findings reinforce the importance of DAA treatment, especially among those with advanced HCV disease. Continuous mental health care including depression and substance use support should be offered to individuals after HCV treatment.</p><p><strong>Trial registration number: </strong>NCT03512210 (22-Oct-2018) Direct-acting antivirals are highly effective for the management of hepatitis C disease. Recent studies have shown that hepatitis C treatment with direct-acting antivirals has a positive impact on quality of life. However, no studies have assessed quality of life among individuals starting direct-acting antivirals treatment across multiple countries representing high-, middle- and low-income settings. In this study, we evaluated changes in health-related quality of life among people with hepatitis C who were treated with direct-acting antivirals using a simplified treatment delivery and offering minimal in-person monitoring. We found quality of life improvements among persons with hepatitis C after direct-acting antivirals treatment, with differences across countries. Although direct-acting antivirals treatment works well and should be available to all persons with hepatitis C, we found that participants with cirrhosis (liver damage) had higher improvements in quality of life, reinforcing the importance of starting treatment among people with advanced hepatitis C. We also found high rates of anxiety and depression, pointing","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1683-1694"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524205","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-06-01Epub Date: 2025-03-22DOI: 10.1007/s11136-025-03948-5
Sonia Sharma, Tiffany J Braley, Kevin N Alschuler, Dawn M Ehde, Anna L Kratz
{"title":"Determining minimal clinically important differences in ecological momentary assessment measures of fatigue in people with multiple sclerosis.","authors":"Sonia Sharma, Tiffany J Braley, Kevin N Alschuler, Dawn M Ehde, Anna L Kratz","doi":"10.1007/s11136-025-03948-5","DOIUrl":"10.1007/s11136-025-03948-5","url":null,"abstract":"<p><strong>Purpose: </strong>Fatigue is a common debilitating symptom of multiple sclerosis (MS). Ecological momentary assessment (EMA) provides a more reliable and sensitive assessment of fatigue outcomes relative to traditional recall surveys; however, the minimal clinically important difference (MCID) for EMA fatigue outcomes has not been established.</p><p><strong>Methods: </strong>MCIDs for EMA fatigue intensity and fatigue interference (0-10 numerical rating scale) that were assessed as outcomes in a pragmatic randomized clinical trial of three fatigue interventions were determined using two statistical approaches. The Patient Global Impression of Change (PGIC) and the Modified Fatigue Impact Scale (MFIS) were used within the anchor-based approach, and standard deviations (SD) and standard error of measurements (SEM) were examined within the distribution-based approach.</p><p><strong>Results: </strong>Pre- and post-treatment EMA data from 336 individuals with MS (76.2% female, 71.1% relapsing-remitting MS, mean age 48.8 (± 11.7) years, mean duration of MS 12.2 (± 9.8) years) were included in the analysis. Percent complete EMA data (4 EMAs/day) for 7 days were comparable pre- and post-treatment for fatigue intensity and for fatigue interference. Using the PGIC and MFIS anchors, change in EMA scores averaged 0.94 and 1.04 for fatigue intensity and 0.62 and 1.04 for fatigue interference, respectively. The SD and SEM for EMA fatigue intensity were 0.75 and 1.19 and for EMA fatigue interference were 0.83 and 1.30, respectively.</p><p><strong>Conclusion: </strong>Combining two approaches, our study contributes foundational information regarding meaningful change on EMA measures of fatigue, enabling effective use of EMA to assess fatigue treatment outcomes in a person-centered manner.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1749-1760"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119754/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143693123","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-06-01Epub Date: 2025-03-13DOI: 10.1007/s11136-025-03941-y
Sharon Barak, Jana Landa, Etzyona Eisenstein, Dafna Guttman, Tamar Silberg
{"title":"Psychometric properties of the Hebrew KIDSCREEN 52, 27 and 10 items: a cross-sectional study of self and parents reports in youth with and without physical disabilities.","authors":"Sharon Barak, Jana Landa, Etzyona Eisenstein, Dafna Guttman, Tamar Silberg","doi":"10.1007/s11136-025-03941-y","DOIUrl":"10.1007/s11136-025-03941-y","url":null,"abstract":"<p><strong>Purpose: </strong>The KIDSCREEN health related quality of life (HRQoL) measures have not been validated in Hebrew and are under-studied in youth with physical disabilities. This study evaluated the psychometric properties of the Hebrew KIDSCREEN-52, 27, and 10, in self-report and parent versions, among youth with and without physical disabilities.</p><p><strong>Methods: </strong>Youth (ages 10-18) with and without physical disabilities, and their parents, completed the KIDSCREEN questionnaires. Disability-related data were collected using the Pediatric Evaluation of Disability Inventory (PEDI), along with psychological evaluations. Internal consistency was measured with Guttman's Lambada, and parent-child concordance using paired t-tests and intraclass correlation (ICC). Convergent validity was assessed with correlations and known group's and discriminative validity were tested by independent t-tests and receiver operating characteristic curve (ROC), respectively. Confirmatory factor analysis (CFI) was also conducted.</p><p><strong>Results: </strong>This study involved 566 child-parent dyads of youth without disabilities and 379 with disabilities, with a mean age of 12.42-13.54 years. Guttman's Lambada was acceptable (≥ 0.7) for all KIDSCREEN subscales. No significant differences were found between self- and parent-reports in the non-disability group, but parents scored lower in the disability group. ICC ranged from 0.5-to-0.90. Convergent validity was confirmed by significant associations between PEDI, psychological health and KIDSCREEN scales. Youth without disabilities reported better HRQoL than those with disabilities. The KIDSCREEN's discriminative ability ranged from very high accuracy in the self-reported KIDSCREEN-52 (AUC = 0.85) to moderate accuracy in the proxy-reported KIDSCREEN-10 (AUC = 0.683). The CFI showed overall good model fit.</p><p><strong>Conclusion: </strong>The Hebrew KIDSCREEN scales show reliability and validity but should be interpreted cautiously due to study limitations. Parent reports should only be primary when self-report isn't possible, as youth with disabilities often differ in their HRQoL evaluations. Youth without physical disabilities reported better HRQoL across multiple dimensions, highlighting the importance of evaluating HRQoL in youth with physical disabilities to address their unique needs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1615-1631"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-06-01Epub Date: 2025-02-19DOI: 10.1007/s11136-025-03924-z
Chong-Ye Zhao, Min-Qian Yan, Xiao-Han Xu, Chun-Quan Ou
{"title":"A weighted predictive modeling method for estimating thresholds of meaningful within-individual change for patient-reported outcomes.","authors":"Chong-Ye Zhao, Min-Qian Yan, Xiao-Han Xu, Chun-Quan Ou","doi":"10.1007/s11136-025-03924-z","DOIUrl":"10.1007/s11136-025-03924-z","url":null,"abstract":"<p><strong>Purpose: </strong>Calculating the threshold for meaningful within-individual change (MWIC) is essential for interpreting patient-reported outcomes (PRO). However, traditional methods of determining MWIC threshold yield varying estimates and lack a standardized approach. We aim to propose a novel method for more accurate MWIC threshold estimation.</p><p><strong>Methods: </strong>We developed a weighted predictive modeling method. The weighting involved using the rank difference between PRO score change and the anchor of each individual. A Monte Carlo simulation was conducted to compare the performance of the new method and that of existing state-of-the-art methods. Simulation parameters included distributions of PRO score changes, sample sizes, improvement proportions, and correlation strengths. Statistical performance was assessed using relative bias (rbias), coefficient of variation (CV), and relative root mean squared error (rRMSE).</p><p><strong>Results: </strong>Distribution-based methods had the largest rbias and rRMSE among all methods. Existing anchor-based methods except for the Terluin 2022 method were biased when the correlation strength was weak or when the improvement proportion was not 50%. The Terluin 2022 method requires estimating an important reliability parameter, and this method had highest CV compared to other predictive modeling methods. The new weighted method demonstrated the smallest rRMSE across most simulation settings. It also maintained relatively high accuracy under weak correlation strength or imbalanced improvement proportion. Similar results were presented under normal or skewed distributions of PRO score changes.</p><p><strong>Conclusion: </strong>This novel method offers a simple and feasible alternative to existing predictive modeling methods for estimating MWIC threshold, which can facilitate the application of PRO.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1797-1808"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143449961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-06-01Epub Date: 2025-03-14DOI: 10.1007/s11136-025-03943-w
I-Chan Huang, Gudrun E Rohde, Justin N Baker
{"title":"Advancing response-shift assessment: insights and directions from a series of ISOQOL SIG meetings.","authors":"I-Chan Huang, Gudrun E Rohde, Justin N Baker","doi":"10.1007/s11136-025-03943-w","DOIUrl":"10.1007/s11136-025-03943-w","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1517-1519"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143630746","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-06-01Epub Date: 2025-04-01DOI: 10.1007/s11136-025-03920-3
Daniela Batallas, Juan José Gallego, Franc Casanova-Ferrer, Alessandra Fiorillo, Pablo Rivas-Diaz, Adrià López-Gramaje, Yaiza M Arenas, Luis Aparicio, Desamparados Escudero-García, Lucía Durbán, María-Pilar Rios, Salvador Benlloch, Amparo Urios, Vanesa Hidalgo, Carmina Montoliu, Alicia Salvador
{"title":"Blood ammonia and eye-hand coordination negatively affect health-related quality of life in women with minimal hepatic encephalopathy.","authors":"Daniela Batallas, Juan José Gallego, Franc Casanova-Ferrer, Alessandra Fiorillo, Pablo Rivas-Diaz, Adrià López-Gramaje, Yaiza M Arenas, Luis Aparicio, Desamparados Escudero-García, Lucía Durbán, María-Pilar Rios, Salvador Benlloch, Amparo Urios, Vanesa Hidalgo, Carmina Montoliu, Alicia Salvador","doi":"10.1007/s11136-025-03920-3","DOIUrl":"10.1007/s11136-025-03920-3","url":null,"abstract":"<p><strong>Purpose: </strong>Minimal hepatic encephalopathy (MHE) is common in cirrhosis, leading to cognitive impairment and eye-hand coordination (EHC) alterations. Hyperammonemia plays a key role in MHE, contributing to motor and cognitive deficits. Elevated blood ammonia levels and impaired EHC correlate with neuropsychiatric dysfunction, yet their direct impact on health-related quality of life (HRQoL) is complex. This study examines the associations between blood ammonia, EHC, and HRQoL, and the moderating influence of sex on these associations.</p><p><strong>Methods: </strong>Eighty-seven cirrhotic patients (67 male) and 23 healthy volunteers (11 male), aged 44-80 years, performed the Psychometric Hepatic Encephalopathy Score (PHES) for MHE diagnosis, the Vienna Test System, bimanual and visuomotor tests, and completed the SF-36 questionnaire to measure HRQoL. Blood samples were taken to test ammonia levels.</p><p><strong>Results: </strong>Results indicated a significant association between elevated blood ammonia and impaired EHC among cirrhotic patients. However, increased blood ammonia and EHC did not directly predict HRQoL. Moderated moderation analysis revealed that women with MHE showed greater sensitivity to hyperammonemia and EHC deficits in tasks requiring fine motor control and stability skills (aiming, tapping, and bimanual coordination), which were linked to lower HRQoL in both physical and mental domains. In women without MHE, alterations in linear tracking were linked to worse HRQoL. These effects were not observed in men.</p><p><strong>Conclusions: </strong>The findings underscore the sex-specific impacts of MHE, with women disproportionately affected by ammonia-related motor impairments and their subsequent influence on HRQoL. These results could contribute to developing targeted strategies to improve outcomes in this vulnerable population.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1669-1682"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119665/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143754251","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"\"If we ask, we must act\": co-designing the implementation of the EQ-5D-Y-5L as a Paediatric Patient Peported Outcome Measure in Routine hospital Outpatient Care for Kids to meaningfully impact clinical visits (P-PROM ROCK Phase 2).","authors":"Renee Jones, Kim Dalziel, Harriet Hiscock, Karen McLean, Diana Truong, Andrew Tuan Phuong Dao, Kathe Holmes, Kath Feely, Jessica Taranto, Abby Palmer, Tanya Wolfe, Penny Richards Fowler, Kirsten Pini, Max Pini, Einat Martonovich-Lantsberg, Joanna Lawrence, Misel Trajanovska, Adele Berry, Valerie Sung, Sebastian King, Nancy Devlin","doi":"10.1007/s11136-025-03996-x","DOIUrl":"https://doi.org/10.1007/s11136-025-03996-x","url":null,"abstract":"<p><strong>Purpose: </strong>To co-design use of the EQ-5D-Y-5L, a generic Paediatric Patient Reported Outcome Measure (P-PROM), in Routine Outpatient Care for Kids (ROCK), maximising its impact on patient-clinician visits.</p><p><strong>Methods: </strong>This Phase 2 co-design study was guided by the co-design framework for public service design and Double Diamond model. Data collection involved facilitated workshops (building on Phase 1), followed by feedback and optimisation sessions. Participants included service providers (doctors, nurses, allied health and medical record staff), adolescents, and caregivers with lived experience of providing or receiving outpatient care at a tertiary paediatric hospital in Australia.</p><p><strong>Results: </strong>Five co-design workshops, nine feedback, and two optimisation sessions were conducted with nine service providers, two adolescents, and three caregivers. Co-design participants created resources to introduce EQ-5D-Y-5L as a 'general health tracking questionnaire' and explain its purpose. EQ-5D-Y-5L responses were designed to be displayed by item. A display of results over time was also designed. A patient empowerment approach was taken with regards to flagging specific EQ-5D-Y-5L items for discussion with clinicians, whereby patients or caregivers control which items are flagged. To ensure clinical review and action of EQ-5D-Y-5L responses, resources, including clinician training, clinician decision support tool, and matching patient booklet and resource pathway, were co-designed. Combined, these design elements make up the P-PROM ROCK Program.</p><p><strong>Conclusion: </strong>Consumer engagement produced important insights that would've otherwise been missed, ensuring the P-PROM ROCK Program empowers patients. For generic P-PROMs to meaningfully impact patient-clinician visits, supports and resources are required to ensure clinical review and action.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144192125","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Commentary on \"Predictors of survival among head and neck cancer patients after radiotherapy based on health-related quality of life indices and symptoms-specific outcomes: a systematic review\".","authors":"Efsun Somay, Erkan Topkan, Ugur Selek","doi":"10.1007/s11136-025-04000-2","DOIUrl":"https://doi.org/10.1007/s11136-025-04000-2","url":null,"abstract":"<p><p>We read with great interest the systematic review by Ghazali et al., which rigorously synthesizes data from 32 longitudinal studies involving 12,206 patients to explore the prognostic significance of health-related quality of life (HRQoL) and symptom-specific outcomes in patients with head and neck cancer (HNC) undergoing radiotherapy (RT). The authors employed best-evidence synthesis methodology and highlighted post-treatment physical function as a robust predictor of overall survival (OS). Moreover, the study underscores the prognostic impact of several clinical variables, such as dysphagia, social eating challenges, and loss of appetite, all of which merit further attention in designing personalized treatment approaches for HNC survivors. While the review makes a timely and essential contribution to the literature, we respectfully suggest several areas where further clarification and expanded analysis may strengthen the interpretation and future applicability of the findings.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144187770","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Julia Lai-Kwon, Claudia Rutherford, Michael Jefford, Iris Zhang, Catherine Devereux, Dishan Herath, Kate Burbury, Stephanie Best
{"title":"Customizing workflows for electronic patient-reported outcome (ePRO) symptom monitoring using the action, actor, context, target, time (AACTT) framework.","authors":"Julia Lai-Kwon, Claudia Rutherford, Michael Jefford, Iris Zhang, Catherine Devereux, Dishan Herath, Kate Burbury, Stephanie Best","doi":"10.1007/s11136-025-03995-y","DOIUrl":"https://doi.org/10.1007/s11136-025-03995-y","url":null,"abstract":"<p><strong>Background: </strong>Real-time electronic patient-reported outcome (ePRO) symptom monitoring is a complex intervention with few examples of successful implementation at scale. A key challenge is designing a clear ePRO symptom monitoring workflow to support implementation into practice. We aimed to create an empirical and theory-informed site-specific workflow guided by the Action, Actor, Context, Target, Time (AACTT) implementation science framework.</p><p><strong>Methods: </strong>A five-step process was undertaken to customize a generic ePRO symptom monitoring workflow to create a site-specific version: (1) design a generic ePRO symptom monitoring workflow through a qualitative study with key stakeholders; (2) conduct co-design workshops to understand stakeholder preferences regarding a site-specific version; (3) code co-design workshop data using the AACTT framework to produce a provisional site-specific version; (4) conduct a final co-design workshop using the AACTT framework to finalize stakeholder preferences for a site-specific version; and (5) code co-design workshop data using the AACTT framework to produce a final site-specific version.</p><p><strong>Results: </strong>Participants (n = 27) included nine patients, four caregivers, four oncologists, four nurses, two pharmacists, two clinic administrators, and two Electronic Medical Record (EMR) analysts. Provisional and final site-specific workflows were generated outlining the key AACTT components for each step of ePRO symptom monitoring.</p><p><strong>Conclusion: </strong>We demonstrated the value in using the AACTT to guide the co-design of a site-specific workflow for ePRO symptom monitoring. By describing this process in detail, we will enable others to replicate this process for creating site-specific workflows not only for ePRO symptom monitoring, but for any complex clinical process.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144174620","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Equivalence of psychiatric structured interviews and symptom checklists in predicting health-related quality of life in children with chronic physical illness.","authors":"Mark A Ferro, Christy K Y Chan, Alex W Luther","doi":"10.1007/s11136-025-03999-8","DOIUrl":"https://doi.org/10.1007/s11136-025-03999-8","url":null,"abstract":"<p><strong>Purpose: </strong>We estimated agreement in classifying psychiatric disorders using a structured interview and symptom checklist, examined associations between psychiatric disorder and health-related quality of life (HRQL) in children with chronic physical illness, and investigated if the instruments were statistically equivalent in predicting HRQL.</p><p><strong>Methods: </strong>We analyzed data from children aged 4-16 years diagnosed with a chronic physical illness. Parents and children completed the Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID; interview), and Emotional Behavioural Scales (EBS; checklist). Two approaches classified psychiatric disorder for the EBS: 1-thresholds based on prevalence (b-EBS); 2-T scores ≥ 70 (t-EBS). Health-related quality of life was measured using the KIDSCREEN-27. Instrument and informant agreement was estimated with kappa (κ). Regression models examined associations between psychiatric disorder at baseline and 24-month HRQL. The method of variance estimates recovery was used to determine whether the instruments were statistically equivalent.</p><p><strong>Results: </strong>Agreement for any psychiatric disorder between the parent-reported MINI-KID and b-EBS was considered substantial (κ = 0.61), but moderate with the t-EBS (κ = 0.51). Fair agreement was found for child reports (κ = 0.28 and κ = 0.29, respectively). Parent-child agreement across instruments was low. No associations between psychiatric disorder measured by the MINI-KID vs. the b-EBS or t-EBS on child HRQL were significantly different for either informant.</p><p><strong>Conclusion: </strong>Agreement between instruments and informants was consistent with previous reports in other samples. Associations between psychiatric disorder and HRQL were not significantly different between the MINI-KID and EBS. Symptom checklists offer a practical opportunity to screen and monitor psychiatric disorder in children with physical illness.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144174686","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}