Quality of Life ResearchPub Date : 2025-09-01Epub Date: 2025-04-17DOI: 10.1007/s11136-025-03966-3
Edith Poku, Matthew Franklin, Emma Simpson, Louise Falzon, Ian Jacob, Christina Donatti
{"title":"An international compendium of health state utilities in people with HIV: a systematic review.","authors":"Edith Poku, Matthew Franklin, Emma Simpson, Louise Falzon, Ian Jacob, Christina Donatti","doi":"10.1007/s11136-025-03966-3","DOIUrl":"10.1007/s11136-025-03966-3","url":null,"abstract":"<p><strong>Purpose: </strong>Measuring health-related quality of life across different health states for people with HIV (PWH) using direct or indirect preference-based values can inform decision-analytic models evaluating cost-effectiveness of different care strategies. This systematic literature review collates comprehensive international evidence on health state utility values (HSUVs) in PWH to inform economic modelling of antiretroviral therapies (ARTs).</p><p><strong>Methods: </strong>This review aligns with PRISMA standards (PROSPERO: CRD42022346286). Searches from multiple sources (e.g. MEDLINE, EMBASE) identified HSUVs for PWH from 2000. We categorised HSUVs using ISPOR's Task Force criteria from low (high bias risk) to high (low bias risk) quality, alongside National Institute for Health and Care Excellence (NICE) suitability grading from Grade 3 (did not meet necessary criteria) to 1 (no concerns). Tabular and narrative syntheses were undertaken.</p><p><strong>Results: </strong>Overall, 53 studies from 22 countries were identified. Study sizes ranged from 32 to 4137 participants. HSUVs were from cross-sectional (n = 45) or longitudinal (n = 10) datasets, stratified by infection stage, CD4 count, viral load, and treatment status. EQ-5D three-level (n = 29) and five-level (n = 18) estimates were most common. Although 28 included studies were 'high' quality, most were Grade 3 for NICE suitability, mainly indicating that the HSUVs for these studies were not representative of a UK population. Extensive methodological and clinical heterogeneity precluded meta-analysis.</p><p><strong>Conclusions: </strong>Greater clarity in treatment regimens, preference-weighting methods, and different HIV clinical stages could improve interpretation and applicability of HSUVs in economic models. Despite this, our compendium and taxonomy of HSUVs can inform ART economic modelling within relevant populations and different jurisdictions.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2451-2470"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12431935/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144021328","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 : 2025-09-01Epub Date: 2025-06-18DOI: 10.1007/s11136-025-04004-y
Rila Su, Claire Snyder, Albert W Wu, Alden L Gross, Jiafu Ji, Jiaming Zhang, Laura Morlock
{"title":"A systematic review of patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQoL) for breast cancer patients who are undertaking adjuvant endocrine therapy.","authors":"Rila Su, Claire Snyder, Albert W Wu, Alden L Gross, Jiafu Ji, Jiaming Zhang, Laura Morlock","doi":"10.1007/s11136-025-04004-y","DOIUrl":"10.1007/s11136-025-04004-y","url":null,"abstract":"<p><strong>Purpose: </strong>Breast cancer (BC) is the most prevalent cancer among women, with hormone receptor-positive BC making up approximately 70% of cases. Adjuvant Endocrine Therapy (AET) is critical in reducing recurrence in this patient population. Still, it often leads to side effects that negatively impact patients' health-related quality of life (HRQoL). Patient-reported outcome measures (PROMs) are widely used to assess HRQoL, but there is inconsistency in the instruments used to evaluate the impact of AET on BC patients. This systematic review aimed to identify and evaluate PROMs that assess HRQoL in BC patients undergoing AET, using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines.</p><p><strong>Methods: </strong>A systematic search was conducted across MEDLINE, EMBASE, Cochrane Library, and Google Scholar for studies published between 2007 and 2023. Studies that developed and validated PROMs for BC patients on AET were included. The measurement properties of each PROM were appraised following COSMIN guidelines, and their relevance, comprehensiveness, and comprehensibility were assessed.</p><p><strong>Results: </strong>The review included 24 studies assessing six PROMs. The European Organization for Research and Treatment of Cancer-Breast Cancer45 (EORTC BR45) and Functional Assessment of Cancer Therapy-Endocrine Symptoms (FACT-ES) demonstrated sufficient content validity and covered the majority of AET-related symptoms. Both instruments were rated highly for structural validity, internal consistency, cross-cultural validity, and reliability. FACT-ES also demonstrated strong responsiveness to treatment-related changes.</p><p><strong>Conclusions: </strong>EORTC BR45 and FACT-ES are the most suitable PROMs for assessing HRQoL in BC patients undergoing AET due to their robust psychometric properties and comprehensive coverage of AET-related symptoms.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2471-2488"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144326726","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 : 2025-09-01Epub Date: 2025-07-02DOI: 10.1007/s11136-025-04017-7
Y M Gjelsvik, T Å Myklebust, S D Fosså, E S Haug, R Kvåle, G Ursin, T B Johannesen
{"title":"A nationwide, longitudinal collection of patient-reported outcomes from prostate cancer patients and controls.","authors":"Y M Gjelsvik, T Å Myklebust, S D Fosså, E S Haug, R Kvåle, G Ursin, T B Johannesen","doi":"10.1007/s11136-025-04017-7","DOIUrl":"10.1007/s11136-025-04017-7","url":null,"abstract":"<p><strong>Purpose: </strong>Patient-reported outcomes (PROs) provide valuable information on adverse effects of cancer treatment. The aim of this study was to describe the feasibility of a population-based PROs collection and identify factors affecting participation.</p><p><strong>Methods: </strong>A total of 13 595 patients diagnosed with prostate cancer (PCa) 2017-2019, along with 10 653 age- and region-matched men with no history of PCa (controls), were invited to a health survey collecting PROs shortly after diagnosis and again one and three years after the initial invitation. Invitations were sent by digital or regular mail. The survey included Norwegian translations of the EQ-5D-5L, EORTC QLQ-C30, and EPIC-26 instruments. We assessed participation rates in all three survey rounds.</p><p><strong>Results: </strong>We invited 90% of newly diagnosed PCa patients to round 1 of the survey. Participation was higher among patients (58%) than controls (34%), with the highest response rate among digitally invited patients aged 60-69 (66%). Among patients, 44% participated in both rounds 1 and 2. Almost one third (32%) of the invited patients participated in all three rounds. Factors associated with higher participation included digital invitation, higher education, lower age, and being treated with curative intent. Among participants treated with curative intent, 51% completed the first questionnaire before starting local treatment.</p><p><strong>Conclusions: </strong>National registry-based PROs data collection is feasible for both PCa patients and controls. However, both non-responder and attrition biases are likely to influence questionnaire results. Institutions conducting population-based health surveys should provide information on non-responders and attrition to aid interpretation of questionnaire data. The Cancer Registry of Norway invited all Norwegian prostate cancer patients diagnosed between 2017 and 2019 to participate in a three-year health and quality of life survey. This study examines the success of the set-up of this nationwide survey. Patients received the first questionnaire at least six weeks after diagnosis, followed by the second and third questionnaires one and three years later. A control group consisting of men with no history of prostate cancer was also invited. We sent invitations as digital or regular (paper) mail. We used widely recognised questionnaires to assess health and quality of life in prostate cancer patients. Of the 13 595 patients invited, 58% participated in the first round. Among the 10 653 controls invited, 34% participated. The combined participation rate for patients in the first two rounds was 44%, and 32% for all three rounds. We found that digital invitation, higher education, lower age, and curative treatment were associated with higher response rates. We have shown that it is possible to conduct a registry-based national health survey over time among patients and controls. However, questionnaire res","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2689-2700"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12431927/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144554315","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 : 2025-09-01Epub Date: 2025-07-04DOI: 10.1007/s11136-025-04011-z
José Luis Castillo, Alba Aza, María Fernández, Mari Storli Rasmussen, Nada Andelic, Miguel Ángel Verdugo
{"title":"Family quality of life after brain injuries: a qualitative study on the perspectives of family members.","authors":"José Luis Castillo, Alba Aza, María Fernández, Mari Storli Rasmussen, Nada Andelic, Miguel Ángel Verdugo","doi":"10.1007/s11136-025-04011-z","DOIUrl":"10.1007/s11136-025-04011-z","url":null,"abstract":"<p><strong>Purpose: </strong>Exploring the perceptions of family members after an acquired brain injury (ABI) regarding their family quality of life (FQoL) is essential for tailoring interventions aimed at promoting recovery and improving family well-being. The aim of this study was to understand their perspectives on FQoL, identify its components, and differences among different family members of people with ABI according to their role within families.</p><p><strong>Methods: </strong>A qualitative study was conducted with ABI survivors and both primary (PCs) and non-primary family caregivers (NPCs) of adults with ABI. A total of 24 survivors, 22 PCs and 14 NPCs from different families were recruited through Spanish Brain Injury Federation. Eight role-specific focus groups on family well-being were conducted. Following verbatim transcription, a thematic analysis (Braun and Clarke, 2006) was performed to identify main domains of FQoL and their indicators. Comparative analyses examined differences among the three groups of participants.</p><p><strong>Results: </strong>Themes, subthemes and indicators of FQoL for ABI families were identified, encompassing five domains-individual well-being, family relationships, family resources, community relationships and community resources-. Also, differences between family members' roles were reported.</p><p><strong>Conclusion: </strong>These findings highlight the importance of addressing FQoL by acknowledging the different family members' experiences. From a family-centered approach, professionals should align to the goals and needs of different family members to provide appropriate support, aiming at enhancing the overall quality of life for families affected by ABI.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2701-2717"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12432037/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144560881","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 : 2025-09-01Epub Date: 2025-05-15DOI: 10.1007/s11136-025-03988-x
Tracy C W Tang, Mun Wong, Jian-Bin Li, Derwin K C Chan
{"title":"Development and initial validation of the health-related quality of life pictorial inventory for children (HEALTH-PIC).","authors":"Tracy C W Tang, Mun Wong, Jian-Bin Li, Derwin K C Chan","doi":"10.1007/s11136-025-03988-x","DOIUrl":"10.1007/s11136-025-03988-x","url":null,"abstract":"<p><strong>Purpose: </strong>This 3-study paper aimed to develop and validate a self-reported Health-Related Quality of Life Pictorial Inventory for Early Childhood Children (HEALTH-PIC). The scale was designed to overcome existing barriers of parent-proxy response styles such as observation bias and offer an alternative to age-suited literary questionnaires to assess self-reported health-related quality of life, including physical health, emotional health, social health and school health in early childhood.</p><p><strong>Methods: </strong>Each study targeted a specific aspect of scale development, employing distinct samples to refine and validate the inventory. Study 1 involved item development/revision, which utilized a panel of 10 experts (Mean<sub>age</sub> = 34.8, SD = 4.9) and 25 parents (Mean<sub>age</sub> = 38.9; SD = 4.1) via the Delphi method to revise the scale and establish agreement. Study 2 is a cross-sectional study that invited a sample of 22 primary school students (Mean<sub>age</sub> = 6.18, SD = 0.39) and 20 kindergarten students (Mean<sub>age</sub> = 4.55, SD = 0.50) to establish face validity amongst primary respondents. Finally, Study 3 is a cross-sectional study that invited 342 parent and child (Mean<sub>age</sub> = 6.30, SD = 1.31) dyads to complete the HEALTH-PIC and reference health-related quality of life (HRQoL) questionnaires to establish the questionnaire's factorial, concurrent, discriminant and criterion validity in addition to internal consistency.</p><p><strong>Results: </strong>Scale items in Study 1 were developed alongside experts and parents with a strong theoretical and statistical support calculated using Aiken's agreement (Aiken's V p < 0.05), ensuring that the items were clear, accurate and applicable for children. In Study 2, we ensured that primary respondents of different ages were able to accurately identify the pictorial images (Aiken's V p < 0.05) and complete the questionnaire when the scripted instructions were read aloud. In Study 3, structural equation modelling of the HEALTH-PIC demonstrated a robust factor structure (CFI and TLI > 0.99; RMSEA and SRMR ≤ 0.08), concurrent validity, discriminant validity, criterion validity and an acceptable level of internal consistency (i.e., Cronbach's α = 0.60-0.66).</p><p><strong>Conclusion: </strong>The findings of the three studies provide preliminary evidence to support the content validity and construct validity of the HEALTH-PIC. This novel pictorial scale not only provides a reliable and valid assessment of the multidimensional aspects of health-related quality of life among children but can also overcome existing barriers of parent-proxy or age-suited questionnaires.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2559-2573"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12431909/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144079795","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 : 2025-09-01Epub Date: 2025-05-27DOI: 10.1007/s11136-025-03997-w
Yunyun Dai, Jinfeng Ding, Yongyi Chen, David Holloway, Junchen Guo, Yu Cheng, Claire E Johnson
{"title":"Process evaluation of a person-centred outcome measures-based quality improvement program in a hospital-based palliative care in mainland China.","authors":"Yunyun Dai, Jinfeng Ding, Yongyi Chen, David Holloway, Junchen Guo, Yu Cheng, Claire E Johnson","doi":"10.1007/s11136-025-03997-w","DOIUrl":"10.1007/s11136-025-03997-w","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to understand Chinese palliative care clinicians' experience in integrating the Palliative Care Outcome Collaboration (PCOC) model into their clinical practice and to learn lessons for sustainability.</p><p><strong>Methods: </strong>An explanatory mixed-methods study was conducted. Combing semi-structured in-depth interviews with palliative care clinicians guided by Normalization Process Theory (NPT) with analysis of clinical documents to examine implementation outcomes. Qualitative data were analysed using a combination of inductive and deductive content analysis, quantitative data were presented using frequencies and percentages.</p><p><strong>Results: </strong>Twelve out of 16 clinicians participated in this study. Six months post-implementation, over half reported successful integration of the model into their unit. Implementation outcomes indicated strong clinician adherence, with all inpatients assessed and 75% of clinicians participating. Eleven sub-themes were identified within the NPT constructs, explaining the mechanisms contributing to its success and failure. These included clinicians' perception of the model's value and effectiveness (Coherence), accurate assessment and effective use of results and quality reports (Collective Action), and a supportive network that fully incorporated clinicians' views (Cognitive Participation), and aligning the PCOC model with existing workflows, reducing redundant tools, and streamlining documentation (Reflexive Monitoring).</p><p><strong>Conclusions: </strong>To effectively implement a PCOMs-based quality improvement program into routine clinical practice, a \"top-down\" followed by a \"bottom-up\" implementation approach is recommended. Effectively utilizing the program to achieve its value and fit into existing workflows without adding unnecessary workload could ensure its sustainability. Furthermore, in countries and regions where palliative care is emerging, priorities should focus on enhancing clinicians' knowledge, self-efficacy, and supporting multidisciplinary collaboration.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2629-2639"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12432087/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144161870","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 : 2025-09-01Epub Date: 2025-07-03DOI: 10.1007/s11136-025-04016-8
Ai-Ping Chua, Mathieu F Janssen, Ling-Jie Cheng, Jan V Busschbach, Nan Luo
{"title":"Psychometric testing of two respiratory bolt-on items to EQ-5D-5L in patients with obstructive airway diseases.","authors":"Ai-Ping Chua, Mathieu F Janssen, Ling-Jie Cheng, Jan V Busschbach, Nan Luo","doi":"10.1007/s11136-025-04016-8","DOIUrl":"10.1007/s11136-025-04016-8","url":null,"abstract":"<p><strong>Objectives: </strong>Two recently developed respiratory bolt-ons were shown to improve the construct validity of EQ-5D-5L among community-treated patients with obstructive airway disease (OAD). We evaluated their psychometric properties, including responsiveness and reliability in a specialist-managed OAD cohort.</p><p><strong>Methods: </strong>We performed in-depth interviews with ten OAD patients and ten clinicians to assess their content validity. We administered the Saint George's Respiratory Questionnaire (SGRQ), EQ-5D-5L and two respiratory bolt-on items, (physical impediment, R1 & symptoms, R2) in adult OAD patients at baseline and follow-up visits. We used the baseline data to compare among four EQ-5D versions, EQ-5D-5L, + R1, + R2 & + R1R2: (1) ceiling using individual item responses; and (2) Spearman's rho correlations (R<sub>s</sub>) with SGRQ, (3) association with clinical characteristics using C-statistics from receiver operating characteristic (ROC) analyses, and (4) coefficient of determination from regression modelling using index/level sum scores. We used the follow-up data to compare intra-class correlation coefficients (ICCs)/Cohen's Kappas (κ) of \"stable\" patients; and standardized effect sizes/C-statistics of \"better\" patients using SGRQ and clinical criteria, across the four versions.</p><p><strong>Results: </strong>Psychometric properties of the respiratory bolt-ons proved to be acceptable. We included 184 patients with a mean age of 54 (standard deviation, 18) years at baseline, and 120 at follow-up at 2.8 (standard deviation, 1.7) months. The ceilings were nullified in + R1, + R2 and + R1R2. Construct validity and responsiveness were consistently higher in + R2 and + R1R2 compared to EQ-5D-5L, while reliability remained comparable among the four versions.</p><p><strong>Conclusions: </strong>Respiratory bolt-ons demonstrated good content validity and enhanced the psychometric properties of EQ-5D-5L in OAD.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2617-2627"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144554316","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 : 2025-09-01Epub Date: 2025-07-09DOI: 10.1007/s11136-025-04008-8
Logan Trenaman, Daphne Guh, Stirling Bryan, Kimberlyn McGrail, Mohammad Ehsanul Karim, Rick Sawatzky, Maggie Yu, Marilyn Parker, Kathleen Wheeler, Mark Harrison
{"title":"Can patient-reported data improve predictions about who will be a high-need, high-cost patient in British Columbia?","authors":"Logan Trenaman, Daphne Guh, Stirling Bryan, Kimberlyn McGrail, Mohammad Ehsanul Karim, Rick Sawatzky, Maggie Yu, Marilyn Parker, Kathleen Wheeler, Mark Harrison","doi":"10.1007/s11136-025-04008-8","DOIUrl":"10.1007/s11136-025-04008-8","url":null,"abstract":"<p><strong>Purpose: </strong>Improving the outcomes for high-need, high-cost (HNHC) patients requires accurately predicting who will become an HNHC patient. The objectives of this study are to: (1) develop models to predict individuals at risk of becoming future HNHC patients, and (2) compare the performance of predictive models with and without patient-reported data.</p><p><strong>Methods: </strong>We used data from two patient-reported surveys datasets from British Columbia, Canada (inpatient and emergency department (ED) surveys) and linked administrative data. Our outcome was being an HNHC patient in the year following survey completion (i.e., incurring costs in the top 5% of the population). We compared two predictor sets, including a standard set (demographic, clinical, and resource use/cost) and an enhanced set (which included patient-reported data), across five model types. We assessed performance using measures of discrimination (c-statistic, and cost capture) calibration (calibration curve), and clinical usefulness (decision curve analysis).</p><p><strong>Results: </strong>Our final sample size was 11,964 for the inpatient survey and 11,144 for the ED survey. Models exhibited good discrimination and calibration. The addition of patient-reported data improved discrimination as measured by the c-statistic (from 0.83, 95% CI: 0.77-0.86 to 0.85, 95% CI: 0.80-0.88 for the logistic regression model from the ED survey), and cost capture (from 0.52, 95% CI: 0.40-0.67 to 0.62, 95% CI: 0.48-0.76). The decision curve analysis demonstrated that the enhanced models provided the highest net benefit across a range of thresholds.</p><p><strong>Conclusion: </strong>Patient-reported data improved the discriminative performance of models to predict HNHC patients, particularly for those with the highest health care costs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2663-2676"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592048","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}
Thaís Gioda Noronha-Ramos, Jessica Klöckner Knorst, Everton Daniel Rauber, Bruno Emmanuelli, Thiago Machado Ardenghi, Fernanda Tomazoni
{"title":"The role of occurrence and co-occurrence of adverse childhood experiences on oral health-related quality of life among adolescents.","authors":"Thaís Gioda Noronha-Ramos, Jessica Klöckner Knorst, Everton Daniel Rauber, Bruno Emmanuelli, Thiago Machado Ardenghi, Fernanda Tomazoni","doi":"10.1007/s11136-025-04034-6","DOIUrl":"https://doi.org/10.1007/s11136-025-04034-6","url":null,"abstract":"<p><strong>Purpose: </strong>Adverse childhood experiences (ACEs) are early negative events that can have lasting consequences on an individual's overall health, including oral health. Since oral health problems are highly prevalent in the population and impact people's daily lives, well-being and quality of life, it is important to identify the main determinants. This study aimed to investigate the role of ACEs on oral health-related quality of life (OHRQoL) among adolescents.</p><p><strong>Methods: </strong>This cross-sectional analysis is nested within a cohort study initiated in 2010 with preschoolers from southern Brazil. The analysis focused on data from the most recent follow-up, involving adolescents aged 14 to 18 years. Data collection covered the period between March and December 2023. ACEs were assessed through the Family Environment Section of the Brazilian version of the Adverse Childhood Experiences-International Questionnaire (ACE-IQ), while OHRQoL was evaluated using the short version of Child Perceptions Questionnaire 11-14 (CPQ11-14). Sociodemographic variables were considered as potential confounders, and associations were analyzed using adjusted Poisson regression models. Results are present in Ratio of Means (RM) and 95% confidence interval (95%CI).</p><p><strong>Results: </strong>A total of 406 adolescents were included in the study. Adolescents exposed to specific ACEs-such as living with someone with substance use problems (RM 1.10; 95%CI 1.01-1.20), with mental illness or suicidal behavior (RM 1.18; 95%CI 1.09-1.27), or incarceration history (RM 1.11; 95%CI 1.01-1.21)-showed higher CPQ11-14 scores. Parental divorce (RM 1.08; 95%CI 1.01-1.16) and parental death (RM 1.37; 95%CI 1.21-1.54) were also associated with poorer OHRQoL. The co-occurrence of ACEs was related with gradual impacts on OHRQoL: adolescents with one, two, or three ACEs presented CPQ11-14 scores 32, 40 and 61% higher (RM:1.32, 1.40, and 1.61, respectively) compared to those without ACEs.</p><p><strong>Conclusions: </strong>The findings demonstrate a consistent association between different ACEs and poorer OHRQoL. The accumulation of multiple ACEs was also associated with a gradual worsening of OHRQoL, emphasizing the consequence of co-occurring adversities.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966266","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 : 2025-09-01Epub Date: 2025-04-11DOI: 10.1007/s11136-025-03933-y
Siti Nur Akmal Ghazali, Hanani Abdul Manan, Caryn Mei Hsien Chan, Marfu'ah Nik Eezamuddeen, Noorazrul Yahya
{"title":"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":"Siti Nur Akmal Ghazali, Hanani Abdul Manan, Caryn Mei Hsien Chan, Marfu'ah Nik Eezamuddeen, Noorazrul Yahya","doi":"10.1007/s11136-025-03933-y","DOIUrl":"10.1007/s11136-025-03933-y","url":null,"abstract":"<p><strong>Purpose: </strong>The association between health-related quality of life (HQoL) and overall survival (OS) among head and neck cancer (HNC) patients remains an important yet complex topic. This study aims to comprehensively analyze the prognostic effects of HQoL indices and symptoms-specific outcomes on overall survival in HNC patients.</p><p><strong>Methods: </strong>A systematic literature search was conducted in PubMed, Web of Science and Scopus databases. The QUIPS tool was used to assess the risk of bias in the prognostic studies. The variables from the HQoL assessments included as predictors of OS were recorded. Different phases of measurements either pre or post-treatment (3 to > 12 months after completion) were also classified to observe the patterns. This review utilized a proposed best-evidence synthesis in which the consistency of significant results from multivariate analysis was observed. Each index that shows > 75% proportion of high-quality studies with same result is classified as strong evidence.</p><p><strong>Results: </strong>Following an extensive search yielding 440 articles, the rigorous screening process identified 32 studies involving 12,206 HNC patients. This review underscores the pivotal role of higher post-treatment physical functioning predicting OS, which is supported by strong evidence and consistent findings. Three indices showed moderate evidence which are pretreatment physical function, post-treatment general HQoL and post-treatment social function. Notably, the analysis revealed that specific general-cancer symptoms, including appetite loss and dyspnea, were reported in association with OS in seven out of 33 instances, following multivariate analysis. Furthermore, the study highlighted the significance of social eating and problems with swallowing as predictors of OS (≥ 5 times instances) compared to other HNC symptoms-specific outcomes.</p><p><strong>Conclusion: </strong>This study sheds light on the underexplored role of post-treatment physical function as predictors for OS, complementing the well-discussed pretreatment physical function. It identifies four specific symptoms significantly impacting OS, highlighting the need for effective management strategies.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2531-2546"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143977039","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}