Quality of Life Research最新文献

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A patient first perspective of sleep disturbance across therapeutic areas: a systematic literature review of qualitative studies.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-11 DOI: 10.1007/s11136-025-03932-z
Kyle Riedmann, Sean Gay, Sarah Averill Lott, Jonathan Berent, Derek L Buhl, Joseph M Dzierzewski, Nina Shaafi Kabiri, Frank Kramer, Michael Kremliovsky, Christian Seitz, Dries Testelmans, Kevin Thomas, Herman de Vries, Piper Fromy
{"title":"A patient first perspective of sleep disturbance across therapeutic areas: a systematic literature review of qualitative studies.","authors":"Kyle Riedmann, Sean Gay, Sarah Averill Lott, Jonathan Berent, Derek L Buhl, Joseph M Dzierzewski, Nina Shaafi Kabiri, Frank Kramer, Michael Kremliovsky, Christian Seitz, Dries Testelmans, Kevin Thomas, Herman de Vries, Piper Fromy","doi":"10.1007/s11136-025-03932-z","DOIUrl":"https://doi.org/10.1007/s11136-025-03932-z","url":null,"abstract":"<p><strong>Background: </strong>Sleep, a vital pillar of health, impacts daily functioning and overall quality of life. Despite extensive research on sleep disturbances within specific therapeutic areas (TAs), there's limited understanding of how these disturbances affect patients across multiple TAs. This systematic literature review adopts a patient-centered approach to explore the meaningful aspects of health and concepts of interest relating to sleep and sleep disturbances across a variety of TAs, utilizing qualitative research to bridge the gap between patient experiences and clinical measures.</p><p><strong>Methods: </strong>A systematic search was conducted in Embase and PubMed for qualitative studies on sleep within selected TAs, using a pre-registered strategy. Initial screenings based on titles and abstracts were followed by full-text reviews and quality appraisal using the CASP checklist.</p><p><strong>Results: </strong>From 4331 unique publications, 52 full-text articles were analyzed across 11 TAs. Thematic analysis highlighted issues within the sleep window, and proximal and distal impacts of sleep disturbances. Using thematic analysis a conceptual model was developed, illustrating a multitude of sleep disturbances from a patient-first perspective, which emphasized sleep quality's role in daily functionality.</p><p><strong>Discussion: </strong>This review emphasizes the importance of incorporating patient perspectives into sleep research and clinical practice. By presenting a holistic conceptual model, it provides a foundation for developing outcome measures that reflect meaningful aspects of patients' sleep experiences. This patient-centered approach highlights the need for novel methodologies in sleep research, beyond traditional clinical outcome assessments, to capture the full spectrum of sleep disturbances' impacts on patients' lives across various TAs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606094","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
Correction: Understanding the impact of early onset colorectal cancer on quality of life: a qualitative analysis of online forum data. 更正:了解早期结直肠癌对生活质量的影响:在线论坛数据的定性分析。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-08 DOI: 10.1007/s11136-025-03938-7
Alice Spencer, Christopher Bedding, Emma Nicklin, Hélène Flint, Alexandra Gilbert
{"title":"Correction: Understanding the impact of early onset colorectal cancer on quality of life: a qualitative analysis of online forum data.","authors":"Alice Spencer, Christopher Bedding, Emma Nicklin, Hélène Flint, Alexandra Gilbert","doi":"10.1007/s11136-025-03938-7","DOIUrl":"10.1007/s11136-025-03938-7","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143582358","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
Effect of impairment on health-related quality of life in people with multiple sclerosis: association of functional systems and EQ-5D-5L index values in a cross-sectional study.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-06 DOI: 10.1007/s11136-025-03928-9
Richard Schmidt, Andreas Starke, Natalie Bednarz, Florian Then Bergh
{"title":"Effect of impairment on health-related quality of life in people with multiple sclerosis: association of functional systems and EQ-5D-5L index values in a cross-sectional study.","authors":"Richard Schmidt, Andreas Starke, Natalie Bednarz, Florian Then Bergh","doi":"10.1007/s11136-025-03928-9","DOIUrl":"https://doi.org/10.1007/s11136-025-03928-9","url":null,"abstract":"<p><strong>Introduction: </strong>Multiple sclerosis (MS) results in physical and cognitive impairments that negatively affect health-related quality of life (HRQoL). It is unknown to what extent the impact of MS-related impairments on HRQoL are reflected in the association of Expanded Disability Status Scale (EDSS) Functional Systems (FS) scores and EQ-5D-5L index values.</p><p><strong>Methods: </strong>This cross-sectional, single-center cohort study recruited people with MS (pwMS) attending an outpatient clinic at a German university hospital. Impairment was assessed via FS scores during routine visits. HRQoL was measured with EQ-5D-5L index values. The association of each FS score with EQ-5D-5L index values and the additive effect of all FS on EQ-5D-5L index values was modeled with multivariate linear regression (MLR).</p><p><strong>Results: </strong>Analyzing 115 participants, unadjusted MLR of single FS revealed that brainstem, pyramidal, cerebellar, sensory, and cerebral/cognitive dysfunctions were significantly associated with lower HRQoL. In MLR of all FS adjusted for covariates, a one standard deviation decrease in cognitive function was significantly associated with a 6% reduction in HRQoL.</p><p><strong>Conclusion: </strong>Dysfunctions in FS contribute to a decrease in HRQoL. Cognitive dysfunction was identified to maintain negative association with HRQoL after adjustment for covariates, and routinely assessed FS scores appeared useful indicators to identify pwMS who may benefit from comprehensive cognitive evaluations. This study adds to the growing body of evidence emphasizing the crucial role of cognitive function in HRQoL of pwMS and highlights the need for effective screening and therapeutic strategies.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567972","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
Development of self-report measures of physical, mental, and emotional fatigability: the michigan fatigability index (MIFI).
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-06 DOI: 10.1007/s11136-025-03934-x
Anna L Kratz, Noelle E Carlozzi, Susan L Murphy, Tiffany J Braley, Daniel Whibley, David A Williams, Nora E Fritz, Michael Kallen
{"title":"Development of self-report measures of physical, mental, and emotional fatigability: the michigan fatigability index (MIFI).","authors":"Anna L Kratz, Noelle E Carlozzi, Susan L Murphy, Tiffany J Braley, Daniel Whibley, David A Williams, Nora E Fritz, Michael Kallen","doi":"10.1007/s11136-025-03934-x","DOIUrl":"https://doi.org/10.1007/s11136-025-03934-x","url":null,"abstract":"<p><strong>Purpose: </strong>To develop item banks and static short-forms for a patient reported outcome measure of perceived physical, mental, and emotional fatigability-the Michigan Fatigability Index (MIFI).</p><p><strong>Methods: </strong>Building on earlier qualitative work, this study utilized cognitive interviews in samples representing the general adult population across the lifespan, people with multiple sclerosis (MS), or people with fibromyalgia (FM) to develop initial item pools. A nationwide cross-sectional survey study in MS and FM samples was used to field test items to develop item banks.</p><p><strong>Results: </strong>Exploratory and confirmatory factors analyses indicated single underlying dimensions for each of the MIFI subdomains, and a graded response model (GRM) supported item fit of 42, 28, and 23 items to the physical, mental, and emotional fatigability items banks, respectively. Differential item functioning was not detected for age, condition (FM vs. MS), education level, ethnicity, race, or sex. Expert review and GRM calibration data was used to inform the selection of three 6-item short forms that assess physical, mental, and emotional fatigability and to program associated computer adaptive tests.</p><p><strong>Conclusion: </strong>The MIFI shows initial evidence of good psychometric properties. Users can administer the MIFI as a static short form and efforts are underway to provide access to the measure as a computer adaptive test. T-Score scale conversion allows comparison of individual scores to a normative clinical sample with a wide range of fatigability.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143573696","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 social needs mitigate ethnoracial inequities in patient-reported mental health.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-05 DOI: 10.1007/s11136-025-03935-w
Manraj N Kaur, Chengbo Zeng, Sri Harshini Malapati, Nadine J McCleary, Peter Meyers, Allison S Bryant, Andrea L Pusic, Maria O Edelen
{"title":"Health-related social needs mitigate ethnoracial inequities in patient-reported mental health.","authors":"Manraj N Kaur, Chengbo Zeng, Sri Harshini Malapati, Nadine J McCleary, Peter Meyers, Allison S Bryant, Andrea L Pusic, Maria O Edelen","doi":"10.1007/s11136-025-03935-w","DOIUrl":"https://doi.org/10.1007/s11136-025-03935-w","url":null,"abstract":"<p><strong>Purpose: </strong>To characterize the relationship between ethnoracial identity, health-related social needs (HRSNs), and mental health (MH), and to examine the mediating role of HRSNs on the relationship between MH and ethnoracial identity.</p><p><strong>Methods: </strong>Data from 30,437 adults who were seeking care within Mass General Brigham integrated health system in United States and had completed PROMIS Global Health within three years of their most recent HRSNs screening between March 1, 2018 and January 31, 2023 were included. The presence and magnitude of PROMIS Global MH score differences for six ethnoracial groups (White non-Hispanic, White Hispanic, Black (Hispanic and non-Hispanic), Asian non-Hispanic, Other non-Hispanic and Other Hispanic (includes Asian Hispanic) was assessed. Regression-based mediation analyses were used to examine mediating role of four HRSNs (food insecurity, housing instability, transportation barriers and inability to pay for housing utilities) on relationship between ethnoracial identity and MH.</p><p><strong>Results: </strong>Compared to White Non-Hispanic patients, ethnoracial minorities had worse MH, after adjusting for age, sex, education, employment, marital status, comorbidities, and insurance type. This relationship remained statistically significant (p < 0.001) for White Hispanic, Asian non-Hispanic and Other non-Hispanic patients, where HRSNs mediated 57%, 88% and 70% of the relationship between ethnoracial identity and MH respectively. For Blacks and Other Hispanic patients, HRSNs fully mediated this relationship.</p><p><strong>Conclusion: </strong>Disparities in MH may be driven by structural racism and experiences of racism that result in differentials in HRSNs, rather than ethnoracial identity. Efforts directed at measuring and addressing the HRSNs, in addition to structural factors are critical to achieving MH equity.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143557823","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
Young children (6-7 years) can meaningfully participate in cognitive interviews assessing comprehensibility in health-related quality of life domains: a qualitative study.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-05 DOI: 10.1007/s11136-025-03940-z
Victoria Gale, Philip A Powell, Jill Carlton
{"title":"Young children (6-7 years) can meaningfully participate in cognitive interviews assessing comprehensibility in health-related quality of life domains: a qualitative study.","authors":"Victoria Gale, Philip A Powell, Jill Carlton","doi":"10.1007/s11136-025-03940-z","DOIUrl":"https://doi.org/10.1007/s11136-025-03940-z","url":null,"abstract":"<p><strong>Purpose: </strong>Establishing the comprehensibility of patient reported outcome measures (PROMs) in quality of life research is essential. Cognitive interviews are recommended as a 'gold standard' for evaluating comprehensibility among adult populations but are not routinely used with young children (≤ 7 years). The current study therefore aimed to evaluate the feasibility of cognitive interviewing using traditional and adapted methods with children aged 6-7 years to evaluate PROM item comprehensibility.</p><p><strong>Methods: </strong>Fourteen children (6-7 years) with a range of diagnosed health conditions participated in individual cognitive interviews. Each child answered six mock PROM items (physical, psychological, and social health-related quality of life domains) and concurrent verbal probes were used to evaluate item comprehensibility. Interviews were audio recorded and transcribed verbatim. Transcripts were analysed using a novel Comprehensibility Continuum which coded the extent of alignment between children's explanations of items and intended meanings.</p><p><strong>Results: </strong>Cognitive interviews were successful; extent of comprehensibility could be determined for 83/84 (99%) item discussions. Most items were comprehensible, with children describing the intended item meaning for 74/84 (88%) items evidenced by contextual examples and/or de-contextual definitions in children's responses to verbal probes. Three items ('walk', 'sad', and 'made fun of') were identified as requiring further testing and/or refinement, where a lower percentage of discussions contained evidence of intended item meaning.</p><p><strong>Conclusion: </strong>Despite previous uncertainty, this study demonstrates how methodological challenges can be addressed to enable young children's participation in cognitive interviews evaluating item comprehensibility, ultimately contributing to the accurate measurement of young children's health outcomes in healthcare and research.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567973","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
Understanding the health-related quality of life impacts of caring for children and adolescents with rare progressive life-limiting conditions: key challenges and future research priorities. 了解照顾患有罕见渐进性局限生命疾病的儿童和青少年对健康相关生活质量的影响:主要挑战和未来研究重点。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-04 DOI: 10.1007/s11136-025-03937-8
Philip A Powell, Jill Carlton, Tessa Peasgood, Fleur Chandler, Josie Godfrey, Emily Reuben
{"title":"Understanding the health-related quality of life impacts of caring for children and adolescents with rare progressive life-limiting conditions: key challenges and future research priorities.","authors":"Philip A Powell, Jill Carlton, Tessa Peasgood, Fleur Chandler, Josie Godfrey, Emily Reuben","doi":"10.1007/s11136-025-03937-8","DOIUrl":"https://doi.org/10.1007/s11136-025-03937-8","url":null,"abstract":"<p><p>The inclusion of health-related quality of life (HRQoL) impacts on informal carers in health technology assessments (HTAs) is lacking due, primarily, to a deficiency in evidence and methodological issues on how informal carer HRQoL is captured and incorporated into economic models. These issues are magnified in areas of significant burden, such as caring for children and adolescents with rare, progressive, life-limiting conditions. In this commentary we outline key challenges in measuring, and incorporating in HTA submissions, informal carer HRQoL data in rare, progressive, paediatric, life-limiting conditions and identify future research priorities in this space. We argue that: (i) a generic model of carer HRQoL is likely inadequate to characterise the HRQoL impacts in this population; (ii) the underlying evidence-base is underdeveloped, including understanding commonalities across conditions, impact beyond the primary carer, and differences over time; and (iii) methodological challenges in modelling informal carer HRQoL in cost-effectiveness analysis are inhibiting progress. A research agenda is proposed that addresses these challenges by focusing first on in-depth qualitative research to develop an appropriate, content valid 'disease-group-specific' model for understanding informal carer HRQoL in rare, progressive, paediatric, life-limiting conditions. This model can be used to inform the appropriate measurement of carer HRQoL in this population, which, alongside methodological research on addressing modelling challenges, can help to facilitate the recommended inclusion of informal carer HRQoL data in HTA submissions for children and adolescents living with rare, progressive, life-limiting conditions.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143543179","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 among extrapulmonary tuberculosis patients and inequalities by disease manifestations: a longitudinal study analysing the impact of TB treatment. 肺外结核患者的健康相关生活质量和疾病表现的不平等:一项分析结核病治疗影响的纵向研究。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-01 Epub Date: 2024-12-05 DOI: 10.1007/s11136-024-03860-4
Shoaib Hassan, Manju Raj Purohit, Mala Kanthali, Reza Yaesoubi, Swapnil Jain, Tehmina Mustafa
{"title":"Health-related quality of life among extrapulmonary tuberculosis patients and inequalities by disease manifestations: a longitudinal study analysing the impact of TB treatment.","authors":"Shoaib Hassan, Manju Raj Purohit, Mala Kanthali, Reza Yaesoubi, Swapnil Jain, Tehmina Mustafa","doi":"10.1007/s11136-024-03860-4","DOIUrl":"10.1007/s11136-024-03860-4","url":null,"abstract":"<p><strong>Background: </strong>To understand the impact of extrapulmonary tuberculosis (EPTB) and its treatment on quality of life, we analysed patient-reported outcome measures (PROMs) among presumptive ETPB patients.</p><p><strong>Methods: </strong>EuroQol's five-dimensional three-level (EQ-5D-3L) questionnaire and the Visual Analogue Scale (EQ-VAS) were used to measure PROMs by 274 presumptive EPTB patients at pre- and post-treatment stages. The patients were categorised as TB and non-TB by using a composite reference standard. Following the EuroQol suggested analysis methods, we calculated the health utility summary measure at the pre- and post-treatment stages. The health state density curve and index were used to analyse inequality in reported health profiles. We investigated factors associated with EPTB patients' health utility through multivariable regression at the pre-treatment stage.</p><p><strong>Results: </strong>The analysis of PROMs showed both physical (mobility, self-care, usual activities) and psychological (pain, discomfort, anxiety & depression) health affected by all EPTB manifestations (lymphadenitis, pleuritis, meningitis and others). Moreover, we found inequality in reported health profiles across disease manifestations at pre- and post-treatment stages. Post-treatment, we found improvement in PROMs and no reports of extreme-level health problems. However, some problems persisted across all dimensions of EPTB manifestations. We found 100% improvement in pleuritis and meningitis manifestations. Socioeconomic status, type of health facility attended, and patients' working capacity were associated with health utility.</p><p><strong>Conclusion: </strong>Despite post-treatment improvement in health, inequality of reported health states by EPTB manifestations persisted, though decreased. This highlights that holistic patient- and health system-level interventions addressing the impact of illness should consider EPTB by its manifestations, not as a single disease entity.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"683-700"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11920340/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786736","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
Enabling six- to ten-year-old children to self-report their wellbeing and quality of life: development and psychometric investigation of an age-adapted and video-assisted version of the KIDSCREEN-27.
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-01 DOI: 10.1007/s11136-025-03939-6
Mette Kurtzhals, Paulina Sander Melby, Peter Elsborg, Peter Bentsen, Caroline Eckert, Malte Nejst Larsen, Glen Nielsen
{"title":"Enabling six- to ten-year-old children to self-report their wellbeing and quality of life: development and psychometric investigation of an age-adapted and video-assisted version of the KIDSCREEN-27.","authors":"Mette Kurtzhals, Paulina Sander Melby, Peter Elsborg, Peter Bentsen, Caroline Eckert, Malte Nejst Larsen, Glen Nielsen","doi":"10.1007/s11136-025-03939-6","DOIUrl":"https://doi.org/10.1007/s11136-025-03939-6","url":null,"abstract":"<p><strong>Purpose: </strong>Identifying the underlying factors that contribute to poor wellbeing and developing strategies for early intervention are essential for promoting overall wellbeing. Many important aspects of wellbeing and quality of life are subjective experiences and therefore require self-report. The KIDSCREEN-27 questionnaire is widely used for this purpose. However, the self-report versions have mainly been validated for children aged 12 to 18 years. This study aims to develop a video-assisted format the KIDSCREEN-27 that enable self-report of wellbeing by children aged six to ten years and to test its psychometric properties.</p><p><strong>Methods: </strong>The Danish-translated version KIDSCREEN-27 was slightly adapted in wording and items (N=12) and a video-format, including audio, illustrations, and smiley-supported scales, was developed, and tested. Next, a psychometric investigation of this version (KIDSCREEN-VIDEO) was conducted on 788 Danish children aged six to ten years (49.8% girls).</p><p><strong>Results: </strong>Confirmatory factor analysis showed an acceptable to good model-fit: X<sup>2</sup> = 727.053; df = 242; P <0.001; root mean squared error of approximation=0.05; the comparative fit index = 0.98; and the Tucker-Lewis index = 0.98, and factor loadings ranged from 0.40 to 0.88. Cronbach's alpha values ranged from 0.65 to 0.89, suggesting acceptable to good internal reliability of the scales. Linear mixed model analyses, and Pearson's r correlation coefficients showed positive associations with the global and physical self-worth scales, indicating convergent validity. The test for measurement invariance indicated the model fit for the five-factor model was consistent across sex and age groups.</p><p><strong>Conclusion: </strong>Based on our results, the KIDSCREEN-VIDEO provides a promising self-reported measure for wellbeing among children aged six to ten.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143537642","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
Patients' experience on waiting for spinal arthrodesis: a qualitative study. 腰椎融合术患者等待经验的定性研究。
IF 3.3 3区 医学
Quality of Life Research Pub Date : 2025-03-01 Epub Date: 2024-12-08 DOI: 10.1007/s11136-024-03861-3
Paolo Pillastrini, Silvano Ferrari, Angela Albano, Michela Beni, Ilaria Burbello, Laura De Cristofaro, Cristiana Griffoni, Katia Mattarozzi, Giuliana Nervuti, Carla Vanti
{"title":"Patients' experience on waiting for spinal arthrodesis: a qualitative study.","authors":"Paolo Pillastrini, Silvano Ferrari, Angela Albano, Michela Beni, Ilaria Burbello, Laura De Cristofaro, Cristiana Griffoni, Katia Mattarozzi, Giuliana Nervuti, Carla Vanti","doi":"10.1007/s11136-024-03861-3","DOIUrl":"10.1007/s11136-024-03861-3","url":null,"abstract":"<p><strong>Purpose: </strong>A number of studies have explored patients' subjective experience of waiting for spinal surgery, however, they did so through an investigation conducted post-operatively. Thus, the aim of this study was to explore the experience of patients while still on the waitlist for lumbar spinal arthrodesis.</p><p><strong>Methods: </strong>This qualitative study of semi-structured interviews was conducted at an orthopedic research institute in Italy. The interview track was developed by a team of professionals (physiotherapists, orthopedic surgeon, psychologist) and consisted of 40 questions. Fifteen patients, 10 females and 5 males aged between 23 and 80 years, waiting for spinal arthrodesis were interviewed. The interviews were performed, transcribed and analyzed by the multiprofessional team through thematic analysis using a reflexive approach.</p><p><strong>Results: </strong>Five main themes were generated: (1) Impact of persistent pain on patients' physical and psychological functioning; (2) Fear of the unknown and uncertainties; (3) Hope and regaining normality; (4) The impact of the unpredictability of the waiting time; (5) Need for better communication and information on the care pathway. Two minor themes were also produced.</p><p><strong>Conclusions: </strong>These findings highlighted that patients on the waiting list for spinal arthrodesis need more certainty about waiting times, better communication with hospital staff, more thorough information about their care pathway. This could help patients feel more confident and may lead to more adequate expectations before surgery.</p><p><strong>Trial registration: </strong>The study protocol was registered on ClinicalTrials.gov database on 14/03/2022 with ID number NCT06323694.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"833-842"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142795058","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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