Quality of Life Research最新文献

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Patients' experiences with the routine use of a clinical feedback system prior to consultations in ostomy care: a qualitative study.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-15 DOI: 10.1007/s11136-025-03916-z
Lill Anette Juvik, John Roger Andersen, Kisten Lerum Indrebø, Anne Marie Sandvoll
{"title":"Patients' experiences with the routine use of a clinical feedback system prior to consultations in ostomy care: a qualitative study.","authors":"Lill Anette Juvik, John Roger Andersen, Kisten Lerum Indrebø, Anne Marie Sandvoll","doi":"10.1007/s11136-025-03916-z","DOIUrl":"https://doi.org/10.1007/s11136-025-03916-z","url":null,"abstract":"<p><strong>Purpose: </strong>Ostomy surgery involves significant bodily changes, and the adjustment process encompasses a broad spectrum of physical and psychosocial challenges. A clinical feedback system (CFS) has been developed to collect patient-reported outcomes as part of routine outpatient follow-up, reviewed by stoma care nurses, to better address patients' needs during their adjustment process. The intervention appears promising; however, empirical evidence supporting its benefits remains limited. Thus, we explored patients' experiences with the routine use of the CFS prior to consultations in ostomy care.</p><p><strong>Methods: </strong>A qualitative design involved 27 semi-structured individual interviews with patients using CFS as part of routine care. The data were analysed using Braun and Clarke's reflexive approach to thematic analysis.</p><p><strong>Results: </strong>The overarching theme CFS-a tool with potential and multiple mechanisms of action was developed with three themes: (1) Grasping the purpose can be challenging, (2) Preparatory learning-triggering reflection and self-awareness, and (3) Means of communication and potential for being understood. Engaging with the CFS had personal utility value with many dimensions, varying in strength and significance for each patient. Even though not everyone grasped the purpose of its use, it was part of a preparatory learning process for consultations and the adjustment process itself. It triggered reflection and self-awareness and served as a means of communication with potential for follow-up.</p><p><strong>Conclusion: </strong>Although the CFS appears promising, future research should focus on identifying the most effective methods for educating patients on its use.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143426032","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
Evaluating the content validity of the EQ-5D-Y for Chinese children and adolescents.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-13 DOI: 10.1007/s11136-025-03917-y
Yifan Ding, Guangjie Zhang, Zhihao Yang, Yue Sun, Anle Shen, Zhuxin Mao, Pei Wang, Jan Busschbach
{"title":"Evaluating the content validity of the EQ-5D-Y for Chinese children and adolescents.","authors":"Yifan Ding, Guangjie Zhang, Zhihao Yang, Yue Sun, Anle Shen, Zhuxin Mao, Pei Wang, Jan Busschbach","doi":"10.1007/s11136-025-03917-y","DOIUrl":"10.1007/s11136-025-03917-y","url":null,"abstract":"<p><strong>Purpose: </strong>Health-related quality of life (HRQoL) is key for assessing healthcare outcomes in children and adolescents. The EQ-5D-Y-3 L, adapted from the adult version, is widely used to measure HRQoL among 8-18 year-olds. Despite its effectiveness, concerns about its content validity persist, particularly in Chinese populations. This study evaluates the EQ-5D-Y's content validity in China, focusing on the comprehensiveness, relevance, and comprehensibility of its dimensions among both healthy and diseased children.</p><p><strong>Methods: </strong>A qualitative study was conducted with 30 participants (15 healthy, 15 diseased) aged 8-18 in Shanghai, China. The interviews explored participants' perspectives on the EQ-5D-Y's five dimensions, guided by the World Health Organization's (WHO) definition of health. Data were analyzed using a framework approach, with response challenges identified through an adapted model of response issues.</p><p><strong>Results: </strong>A total of 126 codes were generated, with 87 retained and categorized into three themes: physical (n = 16), mental (n = 30), and social health (n = 4). While responses reflected all five EQ-5D-Y dimensions, social health was notably mentioned as crucial but was absent in the EQ-5D-Y. Participants suggested enhancements in mental health coverage and more specific examples for the current dimensions.</p><p><strong>Conclusion: </strong>The EQ-5D-Y is relevant for assessing HRQoL in Chinese children and adolescents but requires improvements, especially in incorporating social health. Enhancing question clarity and specificity could also improve its effectiveness. These findings guide potential refinements to better capture the health experiences of children.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143410142","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
Identifying potential action points for reducing kinesiophobia among atrial fibrillation patients: a network and DAG analysis.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-10 DOI: 10.1007/s11136-025-03897-z
Limei Chen, Xinyu Gou, Shenglan Yang, Hui Dong, Fengwei Dong, Jing Wu
{"title":"Identifying potential action points for reducing kinesiophobia among atrial fibrillation patients: a network and DAG analysis.","authors":"Limei Chen, Xinyu Gou, Shenglan Yang, Hui Dong, Fengwei Dong, Jing Wu","doi":"10.1007/s11136-025-03897-z","DOIUrl":"https://doi.org/10.1007/s11136-025-03897-z","url":null,"abstract":"<p><strong>Purpose: </strong>Kinesiophobia is prevalent among patients with atrial fibrillation (AF), leading to a notable decrease in exercise tolerance and quality of life (QoL). AF-related kinesiophobia encompasses a complex cascade reaction, influenced by psycho-physiological and behavioral factors. To investigate the complex interconnections associated with kinesiophobia among AF patients and identify potential intervention points for its management.</p><p><strong>Methods: </strong>From June 2021 to November 2022, we collected data through paper surveys, using convenience sampling to invite patients with AF. 541 AF patients were included in this study. Data were collected using Tampa Scale for Kinesiophobia Heart (TSK-SV Heart), the Atrial Fibrillation Effect on Quality-of-Life (AFEQT), the Brief Illness Perception Questionnaire (BIPQ), and Medical Coping Modes Questionnaire (MCMQ), respectively. Network analysis and directed acyclic graphs (DAG) were used to visualize the intricate relationships of the factors.</p><p><strong>Results: </strong>The network structure identifies \"Avoidance of Exercise\" as a central node, which, alongside \"Illness Perception\" and \"Resignation,\" acting as bridges that link and activate other factors of AF-related kinesiophobia. The DAG suggests that AF symptoms, located upstream, may act as a trigger, initiating a cascade effect impacting illness perception and coping styles.</p><p><strong>Conclusions: </strong>\"AF symptoms,\" along with psychological factors such as \"illness perception,\" and \"coping styles,\" may serve as potential action points to reduce AF-related kinesiophobia and ultimately improve the overall QoL for AF patients.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143382985","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
Strategies to promote the completion of patient-reported outcome measures by culturally and linguistically diverse and Indigenous Peoples in clinical care settings: A systematic review.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-08 DOI: 10.1007/s11136-025-03913-2
Jessica Nikolovski, Bora Kim, Rachael L Morton, Rebecca Mercieca-Bebber, Jean-Frédéric Levesque, Melissa Tinsley, Kim Sutherland, Brad Rossiter, Margaret Fagan, Gill Hartas, Claudia Rutherford
{"title":"Strategies to promote the completion of patient-reported outcome measures by culturally and linguistically diverse and Indigenous Peoples in clinical care settings: A systematic review.","authors":"Jessica Nikolovski, Bora Kim, Rachael L Morton, Rebecca Mercieca-Bebber, Jean-Frédéric Levesque, Melissa Tinsley, Kim Sutherland, Brad Rossiter, Margaret Fagan, Gill Hartas, Claudia Rutherford","doi":"10.1007/s11136-025-03913-2","DOIUrl":"https://doi.org/10.1007/s11136-025-03913-2","url":null,"abstract":"<p><strong>Purpose: </strong>There is evidence of low completion of patient-reported outcome measures (PROMs) by people from culturally and linguistically diverse (CALD) backgrounds and Indigenous Peoples with chronic health conditions. We aimed to systematically identify ways to support and promote PROM completion by CALD communities and Indigenous Peoples in clinical care settings.</p><p><strong>Methods: </strong>We searched Medline, Embase, Scopus, Web of Science Core Collections and CINAHL databases from 1 January 2000 to 19 September 2024. Primary studies were included if they focused on ways to support and promote PROM completion in the care of CALD and Indigenous populations in clinical care settings. The quality of the included papers was appraised independently by two reviewers, using the Critical Appraisal Skills Programme (CASP) and Mixed Methods Appraisal Tool (MMAT). Data were analysed thematically. PROSPERO registration: CRD42023469317.</p><p><strong>Results: </strong>Of 13,450 title/abstracts retrieved, five papers met eligibility. Strategies to promote PROM completion by Indigenous Peoples included (1) providing training to patients about what PROMs are (2) offering verbal modes of completion and (3) community consultation during design, development, and implementation of PROMs to ensure culturally appropriate and sensitive PROMs are used. Strategies to promote completion by people who are CALD included (1) providing information about how to use electronic PROMs, (2) facilitating self-completion, (3) offering different modes of completion (paper-based, digital), (4) increasing availability of culturally and linguistically appropriate PROM translations, and (5) system-wide financial and administrative support to use translated PROMs.</p><p><strong>Conclusion: </strong>Few studies reported strategies to support the completion of PROMs by people from CALD backgrounds and/or Indigenous Peoples. Adequate training, planning (including community consultation), resourcing, and financial support are required to encourage people who are CALD and Indigenous Peoples to participate in PROM initiatives globally.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374292","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
Staying active, staying sharp: the relationship between physical activity and health-related quality of life for people living with cognitive impairment.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-08 DOI: 10.1007/s11136-025-03910-5
Rezwanul Haque, Khorshed Alam, Jeff Gow, Christine Neville, Syed Afroz Keramat
{"title":"Staying active, staying sharp: the relationship between physical activity and health-related quality of life for people living with cognitive impairment.","authors":"Rezwanul Haque, Khorshed Alam, Jeff Gow, Christine Neville, Syed Afroz Keramat","doi":"10.1007/s11136-025-03910-5","DOIUrl":"https://doi.org/10.1007/s11136-025-03910-5","url":null,"abstract":"<p><strong>Background: </strong>Physical inactivity is a major global health concern and has been identified as a risk factor for cognitive impairment. In Australia, the long-term relationship between physical activity and health-related quality of life (HRQoL) in individuals with cognitive impairment remains under researched. This study aims to address this knowledge gap by using data from a population-based longitudinal study.</p><p><strong>Methods: </strong>We used data from two waves (wave 12 [2012] and wave 16 [2016]) of the Household, Income and Labour Dynamics in Australia (HILDA) Survey. Our final analytic sample consisted of 1,168 person-year observations from 985 unique individuals. To investigate the association between physical activity and HRQoL, we employed random-effects Generalized Least Squares (GLS) model.</p><p><strong>Results: </strong>We found that participants engaging in physical activity, < 1 to 3 times per week, showed significant positive associations with the Physical Component Summary (PCS) score [β = 4.41, Standard Error (SE) = 0.68], Mental Component Summary (MCS) score (β = 2.55, SE = 0.74), and SF-6D utility value (β = 0.05, SE = 0.007) compared to those who did not perform any physical activity. Similarly, participants who engaged in physical activity more than three times per week to every day had notably higher scores in PCS (β = 7.28, SE = 0.82), MCS (β = 4.10, SE = 0.84), and SF-6D utility values (β = 0.07, SE = 0.009).</p><p><strong>Conclusion: </strong>There is clear evidence that performing physical activity is positively associated with improved HRQoL in people with cognitive impairment. Our findings underscore the critical role of public health initiatives, such as health education and community-based programs, in promoting physical activity to enhance the HRQoL of older Australians living with cognitive impairment.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374291","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
Proceedings of the Patient Reported Outcome Measures (PROMs) Research Conference, Sheffield 2023 : 22nd June 2023, University of Sheffield, Sheffield, UK.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-07 DOI: 10.1007/s11136-024-03887-7
{"title":"Proceedings of the Patient Reported Outcome Measures (PROMs) Research Conference, Sheffield 2023 : 22nd June 2023, University of Sheffield, Sheffield, UK.","authors":"","doi":"10.1007/s11136-024-03887-7","DOIUrl":"https://doi.org/10.1007/s11136-024-03887-7","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365472","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
Socio-demographic disparities in health-related quality of life in hypertensive patients in Bangladesh: a comprehensive survey analysis.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-06 DOI: 10.1007/s11136-025-03912-3
Md Mizanur Rahman, Md Nesar Uddin Sorkar, Ryota Nakamura, Md Monirul Islam, Md Ashraful Alam, Syed Khurram Azmat, Motohiro Sato
{"title":"Socio-demographic disparities in health-related quality of life in hypertensive patients in Bangladesh: a comprehensive survey analysis.","authors":"Md Mizanur Rahman, Md Nesar Uddin Sorkar, Ryota Nakamura, Md Monirul Islam, Md Ashraful Alam, Syed Khurram Azmat, Motohiro Sato","doi":"10.1007/s11136-025-03912-3","DOIUrl":"https://doi.org/10.1007/s11136-025-03912-3","url":null,"abstract":"<p><strong>Purpose: </strong>Hypertension is a major health concern in Bangladesh. Assessing the health-related quality of life (HRQoL) among hypertensive patients in Bangladesh can highlight the broad impacts of the condition on morbidity and mortality. Such insights are essential for developing targeted healthcare and prevention strategies to reduce complications, including heart disease, stroke, and kidney failure.</p><p><strong>Methods: </strong>In this cross-sectional study, 5,086 hypertensive patients aged between 18 and 80 were recruited from 75 pharmacies in Bangladesh. We assessed the participants' health using the EQ-5D-5 L descriptive system and the EQ-VAS. Utility scores were calculated using the Indian EQ-5D-5 L value set. Regression models were employed to identify factors associated with overall HRQoL and individual health dimensions.</p><p><strong>Results: </strong>Study participants were mean aged 52 years old, with average systolic and diastolic blood pressures of 140.79 mmHg and 85.98 mmHg, respectively. The average EQ-index and EQ-VAS score were 0.83 and 67.47, respectively. 39% reported difficulties with self-care, 43.5% had mobility problems, 80.6% had pain, and 61.2% had anxiety. HRQoL scores decreased significantly with age, according to the multilevel model. Higher education levels, however, were associated with better HRQoL scores. Male respondents reported fewer problems with mobility, self-care, activity, pain, and anxiety. A decrease in HRQoL scores was observed among older individuals, those without formal education, those in lower quintiles, those unemployed, and those with poor blood pressure control, obesity, or fasting glucose.</p><p><strong>Conclusion: </strong>Study findings indicate disparities in HRQoL based on age, gender, education, and socioeconomic status, highlighting the need for targeted policy interventions.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143256422","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 mere-measurement effect of patient-reported outcomes: a systematic review and meta-analysis.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-05 DOI: 10.1007/s11136-025-03909-y
Preston A Long, Anouk S Huberts, Anouk Neureiter di Torrero, Lisa R Otto, Alizé A Rogge, Valentin Ritschl, Tanja A Stamm
{"title":"The mere-measurement effect of patient-reported outcomes: a systematic review and meta-analysis.","authors":"Preston A Long, Anouk S Huberts, Anouk Neureiter di Torrero, Lisa R Otto, Alizé A Rogge, Valentin Ritschl, Tanja A Stamm","doi":"10.1007/s11136-025-03909-y","DOIUrl":"https://doi.org/10.1007/s11136-025-03909-y","url":null,"abstract":"<p><strong>Purpose: </strong>The mere-measurement effect is the phenomenon in which subjects exposed to measurements have their perceptions and/or behaviors on the inquired topic affected simply through the act of responding. Patient-reported outcomes (PROs) are increasingly used to assess patient perspective and quality of life in clinical trials and different health care settings. This systematic literature review aims to assess what is currently known about the mere-measurement effect of PROs.</p><p><strong>Methods: </strong>A systematic literature review and meta-analysis was conducted. We included studies that provided evidence on perceptual or behavioral changes in patients as a result of exposure to questionnaire items assessing PROs. All adult participants were included regardless of demographics. Any study design was considered eligible for inclusion. The databases MEDLINE [PubMed], CINAHL [Ebsco], Web of Science and ScienceDirect were searched.</p><p><strong>Results: </strong>The search resulted in 636 articles which led to a final extraction of nine. Overall, seven of the nine articles reported a significant main effect, i.e. presence of the mere-measurement effect. For the meta-analysis, thirteen different interventions were included. There was a one-directional, positive and significant overall risk ratio of 1.17 [CI95% 1.04;1.30].</p><p><strong>Conclusion: </strong>This systematic review found significant potential for the mere-measurement effect to shape respondents' behaviors or perceptions for the better, opening the door to the possibility of engineering PROs to serve as a subtle intervention. Future considerations and directions for research are discussed.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190249","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 among positive child health measures in the environmental influences on child health outcomes (ECHO) cohort.
IF 3.3 3区 医学
Quality of Life Research Pub 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":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Health-related quality of life in parents of long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study - Parents. 儿童癌症长期幸存者父母的健康相关生活质量:瑞士儿童癌症幸存者研究--父母的报告。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-02-04 DOI: 10.1007/s11136-025-03892-4
Sonja Kälin, Julia Baenziger, Luzius Mader, Erika Harju, Fabienne Gumy-Pause, Felix Niggli, Grit Sommer, Gisela Michel, Katharina Roser
{"title":"Health-related quality of life in parents of long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study - Parents.","authors":"Sonja Kälin, Julia Baenziger, Luzius Mader, Erika Harju, Fabienne Gumy-Pause, Felix Niggli, Grit Sommer, Gisela Michel, Katharina Roser","doi":"10.1007/s11136-025-03892-4","DOIUrl":"10.1007/s11136-025-03892-4","url":null,"abstract":"<p><strong>Purpose: </strong>Having a child with cancer can profoundly impact parents' health-related quality of life (HRQOL). However, there is a lack of knowledge about the long-term effects of childhood cancer on parents' well-being. The current study aimed to (1) describe the HRQOL of parents of long-term childhood cancer survivors (CCS) and compare it with that of parents from the general population in Switzerland, and (2) investigate sociodemographic and cancer-related determinants of lower HRQOL in parents of CCS.</p><p><strong>Methods: </strong>In this cross-sectional study, a total of 751 parents of CCS (mean time since diagnosis = 23.7 years, SD = 6.7 years) and 454 parents from the general population reported their HRQOL by completing the Short Form-36 (SF-36v2). Sociodemographic and cancer-related characteristics were also collected.</p><p><strong>Results: </strong>Multilevel regression analyses showed that parents of CCS and parents from the general population had similar physical and mental HRQOL. When comparing mothers and fathers separately, there were no differences between the samples, except for higher HRQOL in the domain of physical functioning in mothers of CCS. Cancer-related characteristics were not associated with HRQOL in parents of CCS. Several sociodemographic characteristics such as being female, being from the French or Italian-speaking part of Switzerland, having a lower education, having a chronic condition, and having a migration background were associated with lower HRQOL.</p><p><strong>Conclusion: </strong>Parents of CCS are doing well a long time after their child's cancer diagnosis. Nevertheless, tailored support should be provided for at-risk demographic groups.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190237","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
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