Quality of Life Research最新文献

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Impact of signs and symptoms of dry eye disease on health-related quality of life: a cross-sectional population study among older adults. 干眼病体征和症状对健康相关生活质量的影响:一项针对老年人的横断面人群研究
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-01-28 DOI: 10.1007/s11136-025-03907-0
Ulla Aapola, Paula Mosallaei, Janika Nättinen, Ilona Suurkuukka, Jaakko Tuomilehto, Sirkka Keinänen-Kiukaanniemi, Jouko Saramies, Hannu Uusitalo
{"title":"Impact of signs and symptoms of dry eye disease on health-related quality of life: a cross-sectional population study among older adults.","authors":"Ulla Aapola, Paula Mosallaei, Janika Nättinen, Ilona Suurkuukka, Jaakko Tuomilehto, Sirkka Keinänen-Kiukaanniemi, Jouko Saramies, Hannu Uusitalo","doi":"10.1007/s11136-025-03907-0","DOIUrl":"10.1007/s11136-025-03907-0","url":null,"abstract":"<p><strong>Purpose: </strong>To assess the relationship between quality of life (QoL) and ocular surface health within a Finnish population-based cohort.</p><p><strong>Methods: </strong>A cross-sectional study involved 601 individuals born between the years 1933-1956. Ocular surface health and dry eye disease (DED) were clinically evaluated using several diagnostic tests. Participants completed the Ocular Surface Disease Index (OSDI), QoL assessment with the 15D and Medical Outcomes Study 36-Item Short Form Health Survey (SF-36), and the Beck's Depression Inventory (BDI-II) questionnaires. Various statistical methods were employed to explore the associations between QoL, ocular surface health, and sex disparities.</p><p><strong>Results: </strong>DED had negative impact on QoL in all participants, and especially in women. Adjusted for comorbidities, DED doubled the odds of worse health-related QoL (15D: OR = 2.31 [95% CI: 1.24-4.31, p < 0.01]) and mental health (SF-36 MCS and BDI-II: OR = 2.08 [95% CI: 1.04-4.16, p < 0.05]). Noninvasive tear break-up time (NIBUT) correlated with all QoL scores. In women, the most significant clinical signs correlating with low QoL were NIBUT (15D: r = 0.20, p = 0.002; SF-36 MCS: r = 0.18, p = 0.026), and conjunctival staining (15D: r=-0.19, p = 0.004; BDI-II: r = 0.27, p < 0.001), whereas in men, blepharitis correlated with depression score (BDI-II: r = 0.20, p = 0.036). High OSDI was associated with worse QoL in women, but not in men.</p><p><strong>Conclusion: </strong>This first population-based study assessing general QoL data with objective clinical measures of DED indicated that among elderly population, both symptoms and signs of DED independently impacted different aspects of QoL. In addition, significant sex-differences in these associations were observed and should be considered both in research settings and when assessing and treating people with DED.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1363-1376"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064583/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053455","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}
引用次数: 0
Wellbeing and quality of life among parents of individuals with Fontan physiology. Fontan生理个体的父母的健康和生活质量。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-01-22 DOI: 10.1007/s11136-025-03890-6
Kate H Marshall, Yves d'Udekem, David S Winlaw, Diana Zannino, David S Celermajer, Karen Eagleson, Ajay J Iyengar, Dominica Zentner, Rachael Cordina, Gary F Sholler, Susan R Woolfenden, Nadine A Kasparian
{"title":"Wellbeing and quality of life among parents of individuals with Fontan physiology.","authors":"Kate H Marshall, Yves d'Udekem, David S Winlaw, Diana Zannino, David S Celermajer, Karen Eagleson, Ajay J Iyengar, Dominica Zentner, Rachael Cordina, Gary F Sholler, Susan R Woolfenden, Nadine A Kasparian","doi":"10.1007/s11136-025-03890-6","DOIUrl":"10.1007/s11136-025-03890-6","url":null,"abstract":"<p><strong>Purpose: </strong>To examine global and health-related quality of life (QOL) among parents of individuals with Fontan physiology and determine associations with sociodemographic, parent and child-related health, psychological, and relational factors.</p><p><strong>Methods: </strong>Parents participating in the Australian and New Zealand Fontan Registry (ANZFR) QOL Study (N = 151, Parent Mean age = 47.9 ± 10.2 years, age range: 31.6-79.6 years, 66% women; child Mean age = 16.3 ± 8.8, age range: 6.9-48.7 years, 40% female) completed a series of validated measures. Health-related QOL was assessed using the PedsQL 4.0 Core Generic Scales for adults and global QOL was assessed using a visual analogue scale (0-10).</p><p><strong>Results: </strong>Most parents (81%) reported good global QOL (≥ 6), consistent with broader population trends. Nearly one-third of parents (28%) reported at-risk health-related QOL (based on total PedsQL scores) with physical functioning most affected (44%). Psychological factors, including psychological stress and sense of coherence, emerged as the strongest correlates of global and health-related QOL, explaining an additional 16 to 30% of the variance (using marginal R<sup>2</sup>). Final models explained 35 and 57% and of the variance in global and health-related QOL, respectively (marginal R<sup>2</sup>). Relational factors, including perceived social support and family functioning contributed minimally when analyzed alongside psychological variables.</p><p><strong>Conclusion: </strong>While parents of individuals with Fontan physiology report good global QOL, challenges in health-related QOL exist. We identified key psychological, sociodemographic, and health-related factors associated with parental QOL outcomes. These data may aid early identification of physical and psychosocial difficulties and guide targeted health resource allocation for this population.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1419-1431"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064451/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143009954","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}
引用次数: 0
Delineating the dyadic coping process in HIV serodiscordant male couples: a dyadic daily diary study using the common fate model. 描述艾滋病毒血清不一致男性夫妇的二元应对过程:使用共同命运模型的二元日常日记研究。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-02-03 DOI: 10.1007/s11136-025-03903-4
Jianhua Hou, Rong Fu, Taiyi Jiang, Nancy Xiaonan Yu
{"title":"Delineating the dyadic coping process in HIV serodiscordant male couples: a dyadic daily diary study using the common fate model.","authors":"Jianhua Hou, Rong Fu, Taiyi Jiang, Nancy Xiaonan Yu","doi":"10.1007/s11136-025-03903-4","DOIUrl":"10.1007/s11136-025-03903-4","url":null,"abstract":"<p><strong>Purpose: </strong>Although HIV is likely to be a couple-based issue among serodiscordant male couples due to cross-partner transmission, little is known about how they cope with HIV as a team. This study aimed to examine the dyadic coping process among serodiscordant couples.</p><p><strong>Methods: </strong>A dyadic daily diary study was used to answer our research questions. One hundred and forty-one Chinese HIV serodiscordant male couples completed measures of we-disease appraisal, common dyadic coping, quality of life, and relationship satisfaction for 14 consecutive days and ART adherence, attitudes toward PrEP, quality of life, and relationship satisfaction at a 2-month post-diary assessment. Computations were based on the common fate mediation model, using multilevel structural equation modeling.</p><p><strong>Results: </strong>Regarding direct effect, we-disease appraisal was associated with both partners' quality of life at the between-person level, post-diary quality of life, attitudes toward to PrEP, relationship satisfaction at both levels as well as post-diary relationship satisfaction. Common dyadic coping mediated the association between we-disease appraisal and both partners' quality of life as well as relationship satisfaction at the within-person level. However, no mediating effects were observed at the between-person level.</p><p><strong>Conclusions: </strong>Our findings highlighted the importance of the daily dyadic coping process among HIV serodiscordant couples. Future interventions should direct resources toward fostering a shared disease appraisal and training couples in common dyadic coping strategies for their daily lives.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1317-1332"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064454/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143080753","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}
引用次数: 0
Patient involvement in the development of patient-reported outcome measures used following hip or knee arthroplasty: a scoping review. 患者参与髋关节或膝关节置换术后患者报告的结果测量的发展:一项范围审查。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-01-27 DOI: 10.1007/s11136-025-03899-x
Motahareh Karimijashni, Shokoofih Abbasalipour, Marie Westby, Tim Ramsay, Paul E Beaulé, Stéphane Poitras
{"title":"Patient involvement in the development of patient-reported outcome measures used following hip or knee arthroplasty: a scoping review.","authors":"Motahareh Karimijashni, Shokoofih Abbasalipour, Marie Westby, Tim Ramsay, Paul E Beaulé, Stéphane Poitras","doi":"10.1007/s11136-025-03899-x","DOIUrl":"10.1007/s11136-025-03899-x","url":null,"abstract":"<p><strong>Purpose: </strong>Involving patients in developing patient-reported outcome measures (PROMs) is essential for accurately capturing their perspectives. However, understanding how patients were involved in developing PROMs used after hip or knee arthroplasty is limited. This scoping review aimed to evaluate whether patients were involved in the development of these PROMs and how they were involved.</p><p><strong>Methods: </strong>Two independent reviewers documented patient involvement in item development and comprehensibility testing for 50 PROMs used after hip or knee arthroplasty. Trends in patient involvement over time were analyzed using binary logistic regression.</p><p><strong>Results: </strong>There was no documentation of patient involvement in a collaborative role during the PROM development processes. Regarding the consultative role, of these 26 PROMs, they contributed to item development in 13 PROMs (26%) and comprehensibility testing in four PROMs (8%) and both item development and comprehensibility testing in nine PROMs (18%). Patients who underwent arthroplasty were involved in one or both phases in ten PROMs (20%), while patients with other lower extremity conditions were involved in 16 PROMs (32%). Patients who underwent arthroplasty contributed to both phases in five PROMs: Oxford Knee Score-Activity and Participation Questionnaire, Patient's Knee Implant Performance Questionnaire, Patient-Reported Outcomes Measurement Information System R-Plus-Osteoarthritis of the Knee, Oxford Arthroplasty Early Recovery Score and Oxford Arthroplasty Early Change Score. In addition, our analysis revealed no significant change in patient involvement in a consultative role during either item development or comprehensibility evaluation over time since 1982, when the first PROM included in this review was developed (p = 0.21).</p><p><strong>Conclusions: </strong>Almost half of PROMs used after arthroplasty did not involve patients in their development, highlighting the need to address this gap in development of PROMs. There is also a need to analyze PROMs to ensure they accurately reflect the outcomes that matter to patients.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1195-1209"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143047663","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}
引用次数: 0
Self-compassion, mindfulness, and emotion regulation predict multiple dimensions of quality of life in US post-9/11 veterans. 自我同情、正念和情绪调节可以预测9/11后美国退伍军人生活质量的多个维度。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-01-30 DOI: 10.1007/s11136-025-03908-z
Marcus G Wild, John David Coppin, Corina Mendoza, Allison Metts, Rahel Pearson, Suzannah K Creech
{"title":"Self-compassion, mindfulness, and emotion regulation predict multiple dimensions of quality of life in US post-9/11 veterans.","authors":"Marcus G Wild, John David Coppin, Corina Mendoza, Allison Metts, Rahel Pearson, Suzannah K Creech","doi":"10.1007/s11136-025-03908-z","DOIUrl":"10.1007/s11136-025-03908-z","url":null,"abstract":"<p><strong>Purpose: </strong>Quality of life (QoL), defined by satisfaction, capacity for activities, and functional role performance, is an outcome of interest for both medical and psychological interventions. Among US veterans, QoL is lower than the general population and is associated with mortality and suicide. Third-wave psychosocial interventions (e.g., Acceptance and Commitment Therapy) emphasize QoL as the primary outcome of interest, and specific third-wave intervention targets (e.g., self-compassion, mindfulness, emotion regulation) may contribute to the satisfaction, capacity, and functional domains of QoL of veterans. To evaluate the longitudinal associations of self-compassion, mindfulness, and emotional regulation with three domains of QoL (psychosocial satisfaction, psychosocial capacity, and psychosocial relationship functioning) in US veterans.</p><p><strong>Methods: </strong>351 US combat-deployed veterans self-reported measures of QoL, self-compassion, mindfulness, and emotional regulation at four timepoints across 24 months. Bayesian multivariate multilevel models were fit to the QoL outcomes.</p><p><strong>Results: </strong>Results indicated that all three domains of QoL remained relatively stable over the course of the study period. Increased psychosocial satisfaction and psychosocial capacity were both associated with increased mindfulness and emotion regulation, whereas self-compassion was only related to greater psychosocial capacity for male veterans. Increased functional role performances in romantic and family relationships were associated with increased emotion regulation, with romantic relationship functioning also being associated with increased mindfulness and family relationship functioning with increased self-compassion.</p><p><strong>Conclusion: </strong>These results suggest that mechanisms of third-wave interventions have an impact on QoL among US veterans and that veteran QoL may be improved by broader integration of mindfulness and emotion regulation-based interventions.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1433-1442"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143067511","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}
引用次数: 0
Associations between 24-h movement behaviors and health-related quality of life(HRQoL) in preschool children: a cross-sectional study. 学龄前儿童24小时运动行为与健康相关生活质量(HRQoL)之间的关系:一项横断面研究
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-02-26 DOI: 10.1007/s11136-024-03883-x
Haowen Zhang, Zhaoxu Lu, Ting Zhang, Jin Guo, Yihua Bao, Fang Wang, Haoyang Sun, Hongyan Guan, Jian Wu
{"title":"Associations between 24-h movement behaviors and health-related quality of life(HRQoL) in preschool children: a cross-sectional study.","authors":"Haowen Zhang, Zhaoxu Lu, Ting Zhang, Jin Guo, Yihua Bao, Fang Wang, Haoyang Sun, Hongyan Guan, Jian Wu","doi":"10.1007/s11136-024-03883-x","DOIUrl":"10.1007/s11136-024-03883-x","url":null,"abstract":"<p><strong>Purpose: </strong>To investigate the association between preschool children's 24-h movement behaviors and health-related quality of life (HRQoL), exploring the impact of time reallocation among these behaviors and examining gender differences.</p><p><strong>Methods: </strong>This study analysed HRQoL and 24-h movement behaviors of 349 preschool children in three kindergartens in Beijing, China, selected through convenience sampling using a cross-sectional study design. A t-test and multivariate analysis of variance methods were used to investigate gender differences. The study examined the relationship between 24-h movement behaviors and HRQoL using component data analysis and component isochronic substitution model methods, with an investigation into gender differences in the overall association.</p><p><strong>Results: </strong>The study found a negative correlation between sedentary behavior (SB) and overall HRQoL score (γ = - 11.92, p < 0.05) in the entire sample, particularly affecting physical health score (γ = - 14.39, p < 0.01). Among boys, SB was negatively correlated with the HRQoL total score (γ = - 15.83, p < 0.05), while sleep was positively correlated with psychosocial health scores (γ = 17.814, p = 0.01). However, there was no significant association found between 24-h movement behaviors and HRQoL in girls. When using the component isochronic substitution model, reallocating 30 min from sedentary behavior to sleep increased the total HRQoL score of preschool children by 0.865 points (95% CI 0.071, 1.658). In contrast, reallocating 30 min from sleep to sedentary behavior resulted in a decrease of 0.850 points (95% CI - 1.638, - 0.062) in the total HRQoL score.</p><p><strong>Conclusions: </strong>To improve preschool children's HRQoL, it is recommended to reduce their sedentary behavior time and increase their sleep time. Public health policymakers should consider this when developing 24-h movement behavior guidelines for preschoolers.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1407-1418"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064471/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143516497","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}
引用次数: 0
Quality of life outcomes in colorectal cancer survivors: insights from an observational study at a tertiary cancer center. 结直肠癌幸存者的生活质量:来自三级癌症中心观察性研究的见解
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-02-18 DOI: 10.1007/s11136-025-03918-x
Pola Marchewczyk, Beatriz Costeira, Francisca Brito da Silva, Daniela Cavadas, Nuno Abecasis, Manuel Limbert, João Maciel
{"title":"Quality of life outcomes in colorectal cancer survivors: insights from an observational study at a tertiary cancer center.","authors":"Pola Marchewczyk, Beatriz Costeira, Francisca Brito da Silva, Daniela Cavadas, Nuno Abecasis, Manuel Limbert, João Maciel","doi":"10.1007/s11136-025-03918-x","DOIUrl":"10.1007/s11136-025-03918-x","url":null,"abstract":"<p><strong>Purpose: </strong>Colorectal cancer (CRC) significantly impacts the quality of life (QoL) of survivors, yet detailed assessments of long-term QoL are sparse. This study evaluates QoL among CRC survivors, examining the influence of different treatments and patient characteristics on outcomes.</p><p><strong>Methods: </strong>We conducted a cross-sectional study at a tertiary cancer center in Portugal, enrolling CRC patients who underwent curative surgery from 2013 to 2022. QoL was assessed using the EORTC QLQ-C30 and QLQ-CR29 at 1-, 3-, 5-, and 10-year follow-up intervals. Subgroup analyses were performed based on tumor location, radiotherapy administration, chemotherapy administration, presence of a stoma, and time since treatment, with sociodemographic and clinical factors examined on univariate and multivariate analysis.</p><p><strong>Results: </strong>Of the 825 eligible patients, 324 were invited and 179 participated (response rate: 55.2%). Overall, patients reported high global QoL and functional scores with low symptom scores, comparable to those of the general population. However, rectal cancer survivors experienced poorer outcomes in role and social functioning, body image, and symptom management. Those receiving radiotherapy or chemotherapy reported more symptoms, with chemotherapy recipients showing lower functional scores. Patients with a stoma had significantly lower QoL across functional and symptom scales. Long-term survivors reported decreased physical functioning. Multivariate analysis identified female gender, open surgery, and chemotherapy as factors associated with reduced QoL.</p><p><strong>Conclusion: </strong>This study highlights significant disparities in QoL outcomes between CRC survivors, with QoL influenced by gender, cancer location, radiotherapy or chemotherapy, stoma presence, and survivorship duration, underscoring the need for personalized support programs and tailored care plans.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1501-1514"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064581/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143449962","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}
引用次数: 0
Associations among positive child health measures in the environmental influences on child health outcomes (ECHO) cohort. 环境对儿童健康结果的影响(ECHO)队列中积极儿童健康措施之间的关联
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-02-04 DOI: 10.1007/s11136-025-03900-7
Genevieve L Taylor, Mohamad Burjak, Debashree Ray, Courtney K Blackwell, Hudson P Santos, Jody Ganiban, Anne L Dunlop, Amy J Elliott, Judy L Aschner, Annemarie Stroustrup, Traci A Bekelman, Charles Barone, Carlos A Camargo, Cindy T McEvoy, Irene Tung, Julie B Schweitzer, Julie Herbstman, Robert O Wright, Rosalind J Wright, Aderonke A Akinkugbe, Rachel S Kelly, Tina V Hartert, Barron L Patterson, Casper Bendixsen, Andrea E Cassidy-Bushrow, T Michael O'Shea, Rebecca C Fry
{"title":"Associations among positive child health measures in the environmental influences on child health outcomes (ECHO) cohort.","authors":"Genevieve L Taylor, Mohamad Burjak, Debashree Ray, Courtney K Blackwell, Hudson P Santos, Jody Ganiban, Anne L Dunlop, Amy J Elliott, Judy L Aschner, Annemarie Stroustrup, Traci A Bekelman, Charles Barone, Carlos A Camargo, Cindy T McEvoy, Irene Tung, Julie B Schweitzer, Julie Herbstman, Robert O Wright, Rosalind J Wright, Aderonke A Akinkugbe, Rachel S Kelly, Tina V Hartert, Barron L Patterson, Casper Bendixsen, Andrea E Cassidy-Bushrow, T Michael O'Shea, Rebecca C Fry","doi":"10.1007/s11136-025-03900-7","DOIUrl":"10.1007/s11136-025-03900-7","url":null,"abstract":"<p><strong>Purpose: </strong>Effective measurement of positive child health is critical in improving public health. A proposed measure of positive health, a positive child health index (PCHI), is based on how many of 11 specific physical, developmental, and mental health conditions a child has (ranging from 0 to 11). Accepted measures of positive health, Patient-Reported Outcome Measurement Information System (PROMIS®) measures of global health, meaning and purpose, and life satisfaction, are based on child and caregiver perceptions.</p><p><strong>Methods: </strong>The sample comprised 3713 children aged 5 to 17 years from the NIH Environmental influences on Child Health Outcomes (ECHO) Cohort with data to calculate PCHI and at least 1 child- or caregiver-reported PROMIS measure. Linear regressions were performed to test the associations between each PROMIS measure T-score and the PCHI, adjusting for gestational age, child sex, child age, and maternal factors (age, education, income).</p><p><strong>Results: </strong>The PROMIS measure associated most strongly with PCHI was caregiver-reported global health, followed by child-reported global health. Caregiver-reported life satisfaction and child-reported meaning and purpose were higher for children with a PCHI = 0 compared with children with 3 or more health conditions but not when compared with children with only 1 or 2 conditions. Among children with 4 or more conditions, girls reported lower global health than boys. Sex differences were not found for caregiver-reported measures.</p><p><strong>Conclusion: </strong>PROMIS measures and PCHI offer complementary information on positive child health. PROMIS measures are intended as measures of a person's perception of their health, whereas PCHI reflects a cumulative impact of chronic health conditions from the perspective of health care systems. Both viewpoints are informative in public health promotion.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1277-1289"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12096410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190234","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}
引用次数: 0
Understanding the unique patient-causal singularism and patient reported outcomes. 理解独特的患者-因果单一性和患者报告的结果。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-01-29 DOI: 10.1007/s11136-025-03905-2
K A Meadows, M Reaney
{"title":"Understanding the unique patient-causal singularism and patient reported outcomes.","authors":"K A Meadows, M Reaney","doi":"10.1007/s11136-025-03905-2","DOIUrl":"10.1007/s11136-025-03905-2","url":null,"abstract":"<p><p>Patient reported outcome measures (PROMs) now play a significant role in randomized control trials (RCTs) providing the basis for efficacy or safety endpoints. Most PROM data is quantitative and is summarized at the group level. Whilst PROM data is informative in providing the aggregated patient perspective on disease and interventions, it provides little information about the patients' individual experiences. For this, qualitative 'case study' research is needed. However, qualitative case-study research has traditionally not been considered as robust for establishing causal inference due to its singular nature and lack of quantifiable findings. The focus of this paper was to advance a proposal as to how to produce a single mixed-methods case analysis of an individual's experiences with treatment from PROM and narrative data that can be used in causal inference research; so-called \"Causal singularism\".</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1221-1231"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143067513","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}
引用次数: 0
The Multimorbidity Questionnaire (MMQ1): English translation and validation of a Danish patient reported outcome measure for quality of life in people with multiple long-term conditions in a cross-sectional survey. 多病问卷(MMQ1):在一项横断面调查中,对一名丹麦患者报告的多种长期疾病患者生活质量的结果测量进行了英语翻译和验证。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-05-01 Epub Date: 2025-01-23 DOI: 10.1007/s11136-025-03901-6
Kieran Sweeney, Kristine Bissenbakker, Volkert Siersma, Alexandra Jønsson, Eddie Donaghy, David Henderson, Stewart W Mercer, John Brandt Brodersen
{"title":"The Multimorbidity Questionnaire (MMQ1): English translation and validation of a Danish patient reported outcome measure for quality of life in people with multiple long-term conditions in a cross-sectional survey.","authors":"Kieran Sweeney, Kristine Bissenbakker, Volkert Siersma, Alexandra Jønsson, Eddie Donaghy, David Henderson, Stewart W Mercer, John Brandt Brodersen","doi":"10.1007/s11136-025-03901-6","DOIUrl":"10.1007/s11136-025-03901-6","url":null,"abstract":"<p><strong>Purpose: </strong>MMQ1 is a Danish-language patient-reported outcome measure (PROM) for quality of life (QOL) in people with multiple long-term conditions (MLTC). It measures needs-based QOL across six scales: Physical ability, Concerns and worries, Limitations in daily life, Social life, Personal finances and Self-image. There is currently no such measure available in English. This study aimed to translate and validate MMQ1 for use in the United Kingdom.</p><p><strong>Methods: </strong>Translation used a two-panel method (expert panel: n = 5; and lay panel: n = 6). Content validity was assessed via cognitive interviews (n = 6). A postal survey of 2,753 patients with MLTC recruited through eight GP practices in Scotland included EQ-5D-5L and ICE-CAP as comparator measures alongside MMQ1. Classical test theory psychometric analysis of survey responses followed the International Society for Quality of Life Research minimum reporting standards.</p><p><strong>Results: </strong>Translation resulted in an English-language MMQ1 with good face validity. Cognitive interviews established good content validity. 597 survey responses were received (response rate 22%). Good internal consistency reliability and concurrent validity were demonstrated. Confirmatory factor analysis showed acceptable fit to the six-scales of MMQ1. Five of the six scales also demonstrated good discriminative ability for detecting clinically meaningful differences in QOL. However, inter-item and inter-scale correlations suggested item redundancy and scale overlap.</p><p><strong>Conclusion: </strong>The English-language MMQ1 demonstrated adequate psychometric properties using classical test theory. Further validation using Rasch analysis is planned, and may help optimise and abbreviate the measure. This PROM has the potential to improve the measurement of QOL in MLTC research, including trials.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1291-1304"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064619/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143024354","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}
引用次数: 0
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