Health and Quality of Life Outcomes最新文献

{"title":"Health-related quality of life pre-war and during-war in cardiac patients: evidence from a multicenter prospective study - West Bank.","authors":"Haitham Abu Khadija, Abdalaziz Darwish, Alaa Dabash, Duha Najajra, Yahya Z Fraitekh, Mohammad Masu'd, Anwar Zahran, Mohammad Maraqah, Ihab K Hemieid, Saif Yaseen, Zeina Farhoud, Ghina Daraghmeh, Layan Elayan, Laith Allam Mohmmad Ahmad, Mohammad Khader, Ameer Khader, Ameen Abu Awad, Wafiq Saleh Abdalkreem Othman, Amid Barq, Ahmad K Darwazah, Moath Nairat, Hasan Alkhatib, Nizar Abu Hamdeh, Mohammad Alnees","doi":"10.1186/s12955-026-02506-y","DOIUrl":"10.1186/s12955-026-02506-y","url":null,"abstract":"<p><p>BACKGROUND: War imposes systemic and psychosocial stressors that can disrupt postoperative recovery and diminish quality of life. Quantitative data examining these effects in cardiac surgery populations remain scarce. OBJECTIVES: To assess whether the wartime period following October 7, 2023, independently affected postoperative health-related quality of life (HRQoL) among patients undergoing coronary artery bypass grafting (CABG) or valve surgery in Palestine. METHODS: In this prospective multicenter cohort, 1,686 patients who underwent cardiac surgery between September 2022 and May 2025 were screened. After exclusion of 486 ineligible or non-followed participants, 1,200 patients were included: 465 operated pre-war and 735 during-war. HRQoL was evaluated using the 12-Item Short-Form Health Survey (SF-12), generating Physical Component Summary (PCS) and Mental Component Summary (MCS) Scores. Associations between wartime exposure and SF-12 outcomes were analyzed using generalized linear models (GLMs) with robust standard errors and validated through propensity score matching (PSM, 1:1 nearest neighbor) matching on age, gender, diabetes, surgery type, cardiopulmonary bypass time, and hospital fixed effects. RESULTS: Open-heart procedures increased by 5% monthly during-war. Postoperative complications were generally more frequent in this period, with notable rises in acute kidney injury (33.8% vs. 22.4%), atrial fibrillation (31.9% vs. 24.8%), and surgical site infection (8.8% vs. 4.1%). Mean PCS and MCS values were significantly lower during-war (p = 0.037 and p = 0.013, respectively). In adjusted GLMs, wartime exposure remained independently associated with reduced HRQoL (β = − 1.31 [95% CI − 3.27 to − 0.65] for PCS; β = − 1.19 [95% CI − 3.12 to − 0.75] for MCS). PSM confirmed these findings (PCS = − 1.47 [95% CI − 2.89 to − 0.06], p = 0.041; MCS = − 1.82 [95% CI − 3.67 to 0.04], p = 0.056). CONCLUSIONS: Wartime conditions were independently associated with clinically relevant reductions in both physical and mental postoperative quality of life. Sustained access to rehabilitation, psychosocial support, and follow-up care is crucial to preserving recovery among cardiac surgery patients in conflict-affected settings. CLINICAL TRIAL NUMBER: Not applicable. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13188616/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147591969","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Measuring health-related quality of life in facioscapulohumeral muscular dystrophy: a COSMIN systematic review and conceptual framework.","authors":"Jill Carlton, Philip Powell, Jon Street, Sé Frances, Claire Williams, Anthea Sutton, Channa Hewamadduma","doi":"10.1186/s12955-026-02519-7","DOIUrl":"10.1186/s12955-026-02519-7","url":null,"abstract":"<p><p>BACKGROUND: Facioscapulohumeral muscular dystrophy (FSHD) is a common hereditary myopathy causing progressive muscle weakness. FSHD has substantial impacts on function and health-related quality of life (HRQoL). Patient-reported outcome measures (PROs) are used to assess HRQoL, yet their suitability for FSHD remains unclear. OBJECTIVES: (1) identify PROs used to assess HRQoL in adults with FSHD; (2) evaluate the evidence for their measurement properties; and (3) develop a conceptual HRQoL framework for FSHD. METHODS: A systematic review was conducted in accordance with COSMIN and PRISMA-COSMIN guidelines (PROSPERO: CRD42024605345). Two-stage searches across seven databases (including MEDLINE, Embase, and CINAHL, last updated July 2025) identified PROs assessing HRQoL in FSHD and studies evaluating their measurement properties. Eligibility criteria included publicly available, multi-item self-report PROs scored using established systems. Screening, data extraction, and quality appraisal were performed in duplicate. Measurement properties were rated using COSMIN standards and graded with the COSMIN-modified GRADE approach. Item content of the PROs was examined, mapped to an existing framework, and subsequently refined with people living with FSHD to develop a novel HRQoL framework for FSHD (QUAL-FSHD). RESULTS: Fifty-six development papers and 40 research studies were included in the review, 37 studies reported data on psychometric properties. Sixty-six PROs/subscales were included. Most had evidence limited to content validity (i.e., development papers in non-FSHD populations) and construct validity. Only the Upper Extremity Functional Index (UEFI) had data across five measurement properties, though overall evidence quality was very low to moderate. Responsiveness was assessed in nine PROs, with five determined to be ‘sufficient’. The QUAL-FSHD framework comprises seven themes and 44 subthemes. Mapping of the PROs found 21% (n = 14) covered aspects of physical, psychological, and social functioning, with no instrument covering all subthemes. CONCLUSIONS: Current publicly available HRQoL PROs used in FSHD exhibit significant gaps in content coverage and psychometric evidence to support their use in the condition. The QUAL-FSHD framework provides a structured, stakeholder-informed model for evaluating HRQoL in FSHD. There is an urgent need for future research to establish content validity, psychometric performance, and acceptable respondent burden of existing PROs to ensure accurate assessment of HRQoL outcomes in FSHD. TRIAL REGISTRATION: Not applicable. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13188302/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147520989","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Latent transitions in quality of life and the influencing factors among patients with first-ever ischemic stroke: a prospective longitudinal study.","authors":"Yuqi Xiu, Dongli Chen, Hong Zhang, Zhili Liu, Chunxun Xiao, Hongchun Lin, Yinuo Mai, Juan Xu, Yanchun Wu","doi":"10.1186/s12955-026-02513-z","DOIUrl":"10.1186/s12955-026-02513-z","url":null,"abstract":"<p><p>BACKGROUND: Ischemic stroke (IS) is the second leading cause of death and disability globally, with quality of life (QoL) post-stroke influenced by various factors. Conventional static analytical approaches fail to capture the dynamic transitions between health states over time. This study aimed to characterize the temporal evolution of distinct QoL phenotypes and elucidate the phase-specific mechanisms driving these transitions. METHODS: In this prospective longitudinal study, 442 patients with first-ever IS were assessed for QoL using the Stroke-Specific Quality of Life Scale (SS-QoL) at the acute phase (T0), 1 month (T1), 3 months (T2), and 6 months (T3). Latent Profile Analysis (LPA) was utilized to identify distinct QoL phenotypes, while Latent Transition Analysis (LTA) modeled the probabilities of shifting between latent states. Multi-period Firth’s penalized logistic regression was employed to identify stage-specific determinants of improvement or deterioration across recovery intervals. RESULTS: Three distinct QoL classes (high, moderate, and low) were identified at four time points. The high QoL class exhibited stability but was vulnerable to late declines, while the moderate QoL class showed frequent fluctuations. The low QoL class showed potential for improvement but was at risk for persistent poor outcomes. During the T0-T1 period, improvement was significantly impeded by metabolic and physiological burdens—specifically elevated LDL (β = -0.495, p = 0.013), venous thromboembolism risk (β = -0.990, p = 0.008), and higher Body Roundness Index (β = -0.424, p = 0.001)—but facilitated by left-sided hemiparesis (β = 0.746, p = 0.032). For the transition in the T1-T2 phase, higher LDL levels (β = 0.793, p = 0.047) significantly increased the odds of deterioration, whereas higher total cholesterol (β = -0.620, p = 0.022) reduced it. During the T2-T3 period, resilience (β = -0.054, p = 0.012) and greater functional exercise adherence at 6 months (β = -0.035, p = 0.007) were linked to reduced deterioration. CONCLUSIONS: Transitions between post-stroke QoL states are driven by divergent determinants across recovery phases. The management of IS should follow a continuous, phased approach that prioritizes early control of vascular and metabolic risk factors, sustained engagement in functional rehabilitation over the long term, and systematic integration of psychological support in the later stages, in order to optimize long-term QoL. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141429/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147511702","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Optimizing antibiotic prophylaxis for type III open fractures in China: a cost-effectiveness analysis.","authors":"Shuo Tian, Lei Feng, Zhen Sun, Ruishuai Miao, Yazhou Zhang, Pei Jiang, Hongqiang Liu, Yujin Guo","doi":"10.1186/s12955-026-02517-9","DOIUrl":"10.1186/s12955-026-02517-9","url":null,"abstract":"<p><p>BACKGROUND: Surgical site infections (SSI) remain a significant concern following Type III open fractures. Recent studies have suggested that narrow-spectrum antibiotics like cefazolin (CEZ) may offer comparable efficacy to broader-spectrum combinations in preventing SSI, with potential cost benefits. However, the cost-effectiveness of different prophylactic regimens in Type III open fractures in China has not been comprehensively evaluated. METHODS: A decision-tree model was constructed for a hypothetical cohort of 1,000 adult patients with Type III open fractures in the Chinese healthcare setting. Six prophylactic antibiotic regimens were compared: cefazolin (CEZ), cefazolin + aminoglycosides (CEZ + AG), piperacillin/tazobactam (PIPC/TAZ), cefotaxime (CTX), ampicillin/sulbactam (ABPC/SBT) and ceftriaxone (CTRX). Transition probabilities and utility values were derived from published clinical studies, while cost data were obtained from the Chinese Volume-Based Procurement (VBP) policy for drug pricing, along with additional expenses incurred due to SSI. Both one-way deterministic sensitivity analysis (DSA) and probabilistic sensitivity analysis (PSA) were conducted to assess the robustness of the findings against variations in key parameters. RESULTS: From the perspective of the Chinese healthcare system, CEZ was identified as the dominant strategy (lowest cost and highest utility). With a total cost of 1,272.47 CNY and a total utility of 0.3425 QALYs, CEZ yielded the highest net monetary benefit (NMB) of 31,524.54 CNY at a willingness-to-pay (WTP) threshold of 95,749 CNY/QALY (1×GDP per capita). In contrast, all other regimens were found to be dominated (associated with higher costs and lower QALYs), resulting in negative incremental cost-effectiveness ratios (ICERs) relative to CEZ. Among these, CTRX was the least efficient strategy, incurring the highest cost (3,864.94 CNY) while yielding the lowest total utility (0.3262 QALYs). Sensitivity analyses confirmed the robustness of these findings, reinforcing CEZ as the dominant and most cost-effective option. CONCLUSIONS: This study highlights the cost-effectiveness advantage of CEZ in preventing SSI following Type III open fractures in China. CEZ is the most cost-effective option overall, demonstrating a clear advantage over all other regimens. These findings provide essential insights for guiding antibiotic selection and optimizing healthcare resource allocation in the prevention of surgical infections. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13141444/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147511732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric properties of health-related quality of life assessment instruments in idiopathic pulmonary fibrosis: a systematic review applying COSMIN methodology.","authors":"Kailin Su, Zhenzhen Feng, Lu Wang, Guixiang Zhao, Jiajia Wang, Jiansheng Li","doi":"10.1186/s12955-026-02526-8","DOIUrl":"10.1186/s12955-026-02526-8","url":null,"abstract":"<p><p>BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is associated with heavy symptom burden, limited treatment options, poor prognosis, and significant economic burden, and severely impairs health-related quality of life (HRQoL). Optimizing HRQoL has become an important clinical goal in IPF management. Accurately assessing HRQoL is crucial for optimizing clinical practice and providing a key outcome measure data for clinical research. Although multiple HRQoL assessment instruments exist for IPF, the absence of a universally accepted gold standard, combined with insufficient systematic synthesis and standardized evaluation of their psychometric properties, hinders evidence-based instrument selection. This systematic review aims to provide clinicians and researchers with evidence-based guidance for selecting high-quality HRQoL assessment instruments for IPF by comprehensively evaluating existing instruments’ methodological quality and psychometric properties. METHODS: We conducted systematic searching through PubMed, Cochrane Library, Embase, and Web of Science from inception to June 26, 2025, for studies evaluating psychometric properties of HRQoL instruments in IPF. Two reviewers independently took charge of record screening, data extraction and quality assessment using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. Recommendations were formulated by integrating assessments with the evidence grading system. The protocol was registered with PROSPERO: CRD420251081250. RESULTS: Twenty-one studies covering fourteen HRQoL assessment scales for IPF were included. These scales comprised five generic instruments (e.g., St George’s Respiratory Questionnaire, EuroQol 5-dimension 5-level) and nine disease-specific tools (e.g., St George’s Respiratory Questionnaire-IPF-specific version (SGRQ-I), King’s Brief Interstitial Lung Disease questionnaire (K-BILD), Living with IPF questionnaire). Among the scales, the SGRQ-I and K-BILD were the most studied, with five studies each, and also had the most assessment dimensions of psychometric properties, covering seven properties each. A majority of scales lacked comprehensive validation of content and cross-cultural validity, and none reported measurement error test results. All fourteen scales were ultimately rated as Grade B recommendation. CONCLUSION: Currently, no HRQoL assessment instruments can be unrestrictedly recommended for use in IPF based on the evaluation of their quality. We recommend that future studies draw on the COSMIN guidelines to refine the validation of psychometric properties for existing instruments, or to develop novel high-quality assessment instruments, facilitating accurate evaluation of HRQoL in IPF. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13134188/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147503641","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health-related quality of life in Chinese kidney transplant recipients assessed by Chinese medicine quality of life-11 dimensions (CQ-11D).","authors":"Shaobo Guo, Yingtian Jia, Xinran Yang, Jie Pan, Wentao Zhu, Wanhui Yu, Haiya Sun, Hongxia Liu","doi":"10.1186/s12955-026-02520-0","DOIUrl":"10.1186/s12955-026-02520-0","url":null,"abstract":"<p><p>BACKGROUND: Health-related quality of life (HRQoL) in kidney transplant recipients (KTRs) is a key concern influenced by physiological, social, and cultural factors. However, yet commonly used assessment tools in previous studies do not adequately capture the unique sociocultural context of Chinese populations. The objective of this study was to assess the HRQoL in KTRs using the CQ-11D questionnaire and analyze factors associated with HRQoL to enhance the HRQoL of KTRs. METHODS: We conducted a cross-sectional study. Data were collected from two tertiary hospitals in Beijing and Changsha, China. Demographic and clinical data were collected using a structured questionnaire. The CQ-11D was used to measure HRQoL. Other scales, including the Constitution in Chinese Medicine Questionnaire (CCMQ), the Hospital Anxiety and Depression Scale (HADS), and the Pittsburgh Sleep Quality Index (PSQI), were used to assess TCM constitution, psychological distress, and sleep quality, respectively. Data were analyzed using IBM SPSS 26.0, including bivariate analysis, generalized linear models, and multiple regression analysis. RESULTS: A total of 215 KTRs were enrolled. The median CQ-11D health utility value was 0.918. There were differences across the 11 dimensions of the CQ-11D in KTRs. After the age of 40, the proportion of reported problems generally increased with age. This trend was particularly evident in dimensions such as SY, SM, and JS, where individuals over 50 reported significantly more problems than other age groups. The biased constitutions and poor sleep quality were associated with a higher likelihood of reporting problems in most CQ-11D dimensions. Factors such as sleep quality, TCM constitution, and regular exercise were significantly associated with HRQoL. CONCLUSION: Sleep quality, TCM constitution, and regular physical activity were associated with HRQoL of KTRs. Healthcare professionals should prioritize interventions targeting these factors, especially in older KTRs and those with a biased constitution, to improve their HRQoL. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13130664/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147503679","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Value set of EQ-5D-Y-3L for Hong Kong.","authors":"Eliza Lai-Yi Wong, Kailu Wang, Amy Yuen-Kwan Wong, Annie Wai-Ling Cheung, Carlos King Ho Wong, Nan Luo, Oliver Rivero-Arias, Eng-Kiong Yeoh","doi":"10.1186/s12955-026-02522-y","DOIUrl":"10.1186/s12955-026-02522-y","url":null,"abstract":"<p><p>OBJECTIVES: The EQ-5D-Y instrument is currently used to assess health-related quality of life of health states experienced by young populations. However, a country-specific EQ-5D-Y value set for Hong Kong (HK) is not yet available. The study aimed to develop an HK-specific value set for the EQ-5D-Y, following the valuation proposal recommended by the EuroQol Group. METHODS: The study included a Discrete Choice Experiment (DCE) exercise to estimate the relative importance of each level within the five dimensions of the EQ-5D-Y. A composite Time-Trade Off (C-TTO) was also conducted to anchor the latent scale derived from the DCE to the quality-adjusted life years (QALY) 0–1 scale. Both tasks were administered using the EQ-PVT platform. Responses were collected from adults in the general population, who completed the elicitation tasks from a child’s perspective. RESULTS: A total of 1,001 adult participants responded for the Discrete Choice Experiment (DCE), while 205 adults completed the Composite Time Trade-Off (C-TTO) tasks. The sample was representative of the general Chinese population in HK in terms of age, sex, and geographical distribution. Among the five EQ-5D-Y dimensions, the most influential in determining health state preferences was pain/discomfort, followed by feeling worried, sad, or unhappy; performing usual activities; mobility; and self-care. CONCLUSION: This study presents an EQ-5D-Y-3 L value set for the HK Chinese young population, following the international valuation protocol of this instrument. This value set enables future use of the EQ-5D-Y-3 L for measuring health-related quality of life and conducting economic evaluation for children and adolescents. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13130612/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147503669","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interpreting patient-reported outcomes after ischemic stroke: defining minimal important difference in EQ-5D across recovery phases.","authors":"Pingping Li, Min Zhao, Yining Huang, Weiping Sun, Luying Wang, Xuejing Jin, Feng Xie, Hongchao Li","doi":"10.1186/s12955-026-02524-w","DOIUrl":"10.1186/s12955-026-02524-w","url":null,"abstract":"<p><p>BACKGROUND: The EQ‑5D is widely applied to measure patient-reported outcomes, yet its minimally important difference (MID) has not been clearly established across distinct recovery phases after stroke. This study aimed to determine phase‑specific MIDs in EQ‑5D following stroke and to explore heterogeneity by estimation method, direction of change, and stroke etiology. METHODS: A total of 9978 adults with neuroimaging‑confirmed acute ischemic stroke were included in a prospective longitudinal cohort study. EQ‑5D and modified Rankin Scale (mRS) scores were recorded at admission (V1), hospital discharge (V2), 3-month (V3), and 1-year since admission (V4). Anchor-based MIDs were estimated at both group and individual levels and triangulated by distribution-based and instrument-defined approaches. Changes during the recovery phases (V1–V2, V2–V3, and V3–V4) were grouped into 3 categories: improved, no change, and deteriorated. Subgroup analyses were conducted according to the TOAST classification. Credibility of MID estimates was assessed using a validated instrument for anchor-based methods. RESULTS: Phase-specific group-level MIDs for improvement decreased over time: anchor-based estimates were 0.19 at V2, 0.14 at V3, and 0.11 at V4, while deterioration MIDs were smaller. Distribution-based and instrument-defined estimates fluctuated slightly around the anchor-based values but followed a similar downward trend over time. Individual‑level analyses yielded MIDs with acceptable discriminative power (area under the curve ≥ 0.70) only for improvement at V2 (0.10) and V3 (0.01). Cardioembolic strokes had higher MIDs than large-artery atherosclerosis and small-artery occlusion, while baseline utilities showed the reverse. Credibility assessment confirmed high reliability. CONCLUSION: This study provides the phase‑specific MIDs for utility measures after ischemic stroke, showing a declining trend from acute to chronic recovery and confirming robustness across multiple estimation methods. While group‑level MID ranges are recommended for effect size interpretation, trial design, and evidence certainty rating, individual‑level thresholds should be reserved for personalized evaluation. These values assist in the interpretation of patient‑reported outcome changes and evaluation of healthcare interventions across different recovery phases. TRIAL REGISTRATION: ClinicalTrials.gov NCT02470624. Registered 10 June 2015. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13130762/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147493418","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cross-cultural adaptation and validation of the Pediatric Chemotherapy-Induced Neuropathy (P-CIN) using a patient-reported outcome measure for Chinese pediatric oncology patients.","authors":"Ting Mao, Janelle Yorke, Yan Shi, Nanping Shen, Frankie Wai Tsoi Cheng, Haixia Wang, Katherine Ka Wai Lam, Qi Liu, Funa Yang, Li Wang, Mengxue He, Xin Liu, Ellen M Lavoie Smith, Ka Yan Ho","doi":"10.1186/s12955-026-02509-9","DOIUrl":"10.1186/s12955-026-02509-9","url":null,"abstract":"<p><p>BACKGROUND: Chemotherapy induced peripheral neuropathy (CIPN) is a symptom commonly reported by pediatric oncology patients who receive neurotoxicity agents. Early identification is imperative for the intervention implementation. Currently, the Pediatric Chemotherapy-Induced Neuropathy (P-CIN) is an age-appropriate, patient-reported outcome (PRO) for pediatric CIPN. However, it has not been used in China, and importantly does not contain a cut-off value to guide healthcare professionals for clinical decision making. OBJECTIVES: We aimed to cross-cultural adapt the P-CIN into Chinese context, and assess its psychometric properties. DESIGN: Methodological and descriptive study. SETTINGS: Shenzhen Children’s Hospital, Henan Cancer Hospital and Shanghai Children’s Medical Center in China. PARTICIPANTS: 313 pediatric oncology patients were conveniently sampled. METHODS: The Chinese P-CIN version was cross-culturally adapted and validated according to the established methodological guidelines. Participants were asked to provide demographic and clinical information, complete the translated P-CIN, Wong-baker FACES Pain Rating scale, and Pediatric Quality of Life Inventory (PedsQL) Cancer Module, and nerve conduction study. RESULTS: The Chinese P-CIN version showed satisfactory internal consistency (Cronbach’s alpha coefficient: 0.771) and good test-retest reliability for 2-week interval (intraclass correlation coefficient: 0.810). Excellent content validity was demonstrated; the item content validity index (CVI) ranged from 0.90 to 1.00, the average-CVI was 0.98 and the universal-CVI was 0.85. The total score of the translated P-CIN was strongly correlated with the Wong-baker FACES Pain Rating scale (Spearman’s correlation coefficient (r): 0.909, p < 0.001) and PedsQL Cancer Module (r = -0.710, p < 0.001), presenting good convergent validity. Using the clinician diagnosis of pediatric CIPN as a reference criterion, the area under the curve was 0.894. The optimal cut-off value to identify significant symptom burden of CIPN was 9. Exploratory factor analysis yielded a two-factor model (Sensory symptoms and Functional Task Performance Ability). The confirmatory factor analysis results supported the good fit of the two-factor model. Known-group validity was supported by the significant differences in the translated P-CIN score between patients grouped by neurotoxic chemotherapy agents (p = 0.014, ηp²=0.019) and cancer diagnosis (p = 0.026, ηp²=0.016). Besides, 82% of the participants completed the translated P-CIN independently. CONCLUSIONS: The Chinese P-CIN version was found to be a reliable and feasible PRO for pediatric CIPN. It shall be adopted as a routine tool for the detection of CIPN among Chinese pediatric oncology patients. REGISTRATION: Clinicaltrial, NCT07053579. Registered 18/06/2025, retrospectively registered. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13127041/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147491134","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health-related quality of life in immunocompromised adults with mild-moderate COVID-19 treated with nirmatrelvir-ritonavir: results from the randomized, double-blinded EPIC-IC trial.","authors":"Ruth Mokgokong, Paul Cislo, Elena Tudone, Edward Weinstein, Joseph C Cappelleri","doi":"10.1186/s12955-026-02518-8","DOIUrl":"10.1186/s12955-026-02518-8","url":null,"abstract":"<p><p>BACKGROUND: Little is known about health-related quality of life (HRQoL) in immunocompromised people during and after COVID-19 illness. We describe HRQoL outcomes from the EPIC-IC trial, which included participants with immunocompromise and mild–moderate COVID-19. METHODS: EPIC-IC was a randomized, double-blind trial. Participants were assigned 1:1:1 to 5-day, 10-day, or 15-day nirmatrelvir-ritonavir (NMV/r) and completed the SF-36 and EQ-5D-5L through Week (W)24. HRQoL was analyzed across and by treatment arms for the evaluable population (N = 150) and in post hoc subpopulations with severe (n = 57) and non-severe (n = 93) immunocompromise. Mixed-effects longitudinal models compared 5-day vs. 10-day or 15-day NMV/r. RESULTS: In the overall sample, mean baseline SF-36 domain scores (norm-based; mean = 50, SD = 10) ranged from 35.7 to 44.1, mean Physical Component Summary (PCS) score was 37.9, and mean Mental Component Summary (MCS) score was 41.5 – all substantially worse than cancer comparator norms and age-matched general population (AMGP) norms. Baseline mean EQ-5D-5L Index score was 0.65; participants reported problems with pain/discomfort (90% of participants), usual activities (73%), mobility (50%), anxiety/depression (48%), and self-care (29%). These proportions improved through Day (D)15 (change from baseline [CFB]: − 49%-points for pain/discomfort, − 38%-points usual activities, − 22%-points mobility, − 24%-points anxiety/depression, − 19%-points self-care) and then stabilized. From the earliest post-baseline assessment (EQ-5D-5L: D5, SF-36: D10), all overall-sample outcomes improved significantly (-5D-5p < 0.05), with all mean improvements exceeding published minimum important difference thresholds (SF-36: 2–4-point; EQ-5D-5L Index: 0.03–0.05-point). Mean EQ-5D-5L Index score surpassed AMGP norms from D5 and peaked at D15 (0.21-point CFB). Mean SF-36 outcomes improved through W12; PCS surpassed AMGP norms at W12, while MCS approached but remained below AMGP norms. Improvements were sustained through W24 (W24 CFB: PCS, 10-point; MCS, 8-point; EQ-5D-5L Index, 0.20-point). EQ-5D-5L improvements appeared similar across immunocompromised subpopulations, whereas SF-36 improvements appeared slower and smaller in severely vs. non-severely immunocompromised participants. No significant treatment-arm differences were observed, except lower D10 PCS scores among severely immunocompromised participants treated with 5-day vs. 10-day NMV/r (p = 0.03). CONCLUSION: Immunocompromised individuals with mild–moderate COVID-19 experienced various HRQoL decrements, followed by rapid improvements during treatment that were sustained through W24. Interpretation is limited by the absence of an untreated control group. CLINICAL TRIAL REGISTRATION: Clinical trial number: NCT05438602. Registry: ClinicalTrials.gov. Registration date: June 28, 2022. URL: https://clinicaltrials.gov/ct2/show/NCT05438602 . </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123141/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147485339","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}