Quality of Life ResearchPub Date : 2025-09-01Epub Date: 2025-04-23DOI: 10.1007/s11136-025-03982-3
Joel Sims, Andrew Trigg, Jessica Flynn, Aoife Lydon, Natasha Griffiths, Kim Cocks, Rob Arbuckle
{"title":"A literature review exploring whether meaningful change threshold estimates for patient-reported outcome (PRO) measures vary depending on baseline severity.","authors":"Joel Sims, Andrew Trigg, Jessica Flynn, Aoife Lydon, Natasha Griffiths, Kim Cocks, Rob Arbuckle","doi":"10.1007/s11136-025-03982-3","DOIUrl":"10.1007/s11136-025-03982-3","url":null,"abstract":"<p><strong>Purpose: </strong>Meaningful change thresholds for patient-reported outcome (PRO) measures may differ according to patients' baseline disease severity. This review aimed to explore methods used in the peer-reviewed literature to assess the relationship between baseline severity and meaningful change thresholds and the nature of this relationship.</p><p><strong>Methods: </strong>A structured literature review was conducted to identify relevant abstracts published between 2018-2022 reporting estimation of PRO meaningful change thresholds by baseline disease severity. Methods to estimate thresholds and direction of the relationship with baseline severity were extracted.</p><p><strong>Results: </strong>1029 abstracts were screened and 22 full-text articles were deemed eligible for inclusion in the review. All 22 articles reported meaningful change thresholds that were estimated by baseline severity. Nearly all studies (n = 21) used anchor-based methods and reported thresholds for improvement. Most studies (n = 19) used the baseline score of the PRO being examined to define baseline severity. Baseline severity dependency was often tested by repeating methods within baseline-stratified groups (n = 16). All studies reported at least one PRO score where meaningful change was dependent upon baseline severity. The direction of the relationship for improvement was predominately a larger meaningful change threshold for worse baseline severity (n = 21).</p><p><strong>Conclusion: </strong>Methods used to assess baseline severity dependency for meaningful change thresholds vary, however most studies reviewed concluded that larger thresholds are warranted for worse baseline severity. Future work should explore how to distinguish true baseline severity dependency from statistical artifacts to ensure accurate interpretation of PROs in both clinical trials and clinical practice.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2489-2499"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143995071","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-09-01Epub Date: 2025-05-29DOI: 10.1007/s11136-025-03999-8
Mark A Ferro, Christy K Y Chan, Alex W Luther
{"title":"Equivalence of psychiatric structured interviews and symptom checklists in predicting health-related quality of life in children with chronic physical illness.","authors":"Mark A Ferro, Christy K Y Chan, Alex W Luther","doi":"10.1007/s11136-025-03999-8","DOIUrl":"10.1007/s11136-025-03999-8","url":null,"abstract":"<p><strong>Purpose: </strong>We estimated agreement in classifying psychiatric disorders using a structured interview and symptom checklist, examined associations between psychiatric disorder and health-related quality of life (HRQL) in children with chronic physical illness, and investigated if the instruments were statistically equivalent in predicting HRQL.</p><p><strong>Methods: </strong>We analyzed data from children aged 4-16 years diagnosed with a chronic physical illness. Parents and children completed the Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID; interview), and Emotional Behavioural Scales (EBS; checklist). Two approaches classified psychiatric disorder for the EBS: 1-thresholds based on prevalence (b-EBS); 2-T scores ≥ 70 (t-EBS). Health-related quality of life was measured using the KIDSCREEN-27. Instrument and informant agreement was estimated with kappa (κ). Regression models examined associations between psychiatric disorder at baseline and 24-month HRQL. The method of variance estimates recovery was used to determine whether the instruments were statistically equivalent.</p><p><strong>Results: </strong>Agreement for any psychiatric disorder between the parent-reported MINI-KID and b-EBS was considered substantial (κ = 0.61), but moderate with the t-EBS (κ = 0.51). Fair agreement was found for child reports (κ = 0.28 and κ = 0.29, respectively). Parent-child agreement across instruments was low. No associations between psychiatric disorder measured by the MINI-KID vs. the b-EBS or t-EBS on child HRQL were significantly different for either informant.</p><p><strong>Conclusion: </strong>Agreement between instruments and informants was consistent with previous reports in other samples. Associations between psychiatric disorder and HRQL were not significantly different between the MINI-KID and EBS. Symptom checklists offer a practical opportunity to screen and monitor psychiatric disorder in children with physical illness.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2591-2603"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144174686","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-09-01Epub Date: 2025-06-24DOI: 10.1007/s11136-025-04005-x
Sophia Hu, Amitai S Miller, Michael N Parisi, William R Boysen, Devin Coon, Andrea L Pusic, Manraj N Kaur
{"title":"Collecting patient-reported outcomes data in transgender and gender diverse adults seeking surgery: barriers and facilitators from the patient perspective.","authors":"Sophia Hu, Amitai S Miller, Michael N Parisi, William R Boysen, Devin Coon, Andrea L Pusic, Manraj N Kaur","doi":"10.1007/s11136-025-04005-x","DOIUrl":"10.1007/s11136-025-04005-x","url":null,"abstract":"<p><strong>Purpose: </strong>Patient-reported outcome measures (PROMs) evaluate how patients feel and function. While several prior studies have explored barriers and facilitators to integrating PROM data collection in clinical workflows from patient perspectives, research on this topic remains limited for transgender and gender-diverse (TGD) patients seeking gender-affirming surgery. The objective of this qualitative study was to identify barriers and facilitators to collecting PROM data in TGD patients undergoing surgery from the patient perspective.</p><p><strong>Methods: </strong>Interpretive descriptive approach was used. In-depth semi-structured interviews were conducted with adult TGD patients who were seeking or had undergone gender-affirming surgery at a single academic tertiary center to understand barriers and facilitators to completing PROMs related to their care. All interviews were audio-recorded, transcribed verbatim and analyzed using content analysis.</p><p><strong>Results: </strong>A total of 14 interviews were completed with participants (median age 32.5 years, range 21-60 years), of whom nine were assigned female at birth and five were assigned male at birth. Eight participants identified as men, five identified as women, and one identified as non-binary. Nine participants received masculinizing and five participants received feminizing procedures. Barriers to completing PROMs were organized into four sub-domains of difficulty engaging with content (e.g., uncomfortable questions, unclear or not inclusive questions), mode of administration (e.g., delivery method, location and environment of completion), concerns about privacy and confidentiality (e.g., mistrust of source, data privacy concerns), and fear of negative impact on care (e.g., fear of losing medical care). Facilitators were organized into four subdomains of altruism (e.g., importance of TGD-specific research, desire to give back to prospective patients), belief in research value (e.g., ensure accurate data, sense of social responsibility), desire to improve medical care and programs (e.g., reduce healthcare-related microaggressions), and access to gender-affirming care.</p><p><strong>Conclusion: </strong>Adult TGD patients have multiple barriers and facilitators to completing PROMs. Healthcare providers and systems should address barriers to create safe spaces that ensure sustained engagement of TGD individuals in PROM data collection efforts.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2641-2650"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144476486","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}
Christina Kazzi, Nabil Seery, Sarah Griffith, Robb Wesselingh, Tiffany Rushen, Tracie H Tan, Katherine Y Ko, Liora Ter Horst, Genevieve Skinner, Laurie McLaughlin, Hannah Ford, Catherine Meade, Marie O'Shea, Katherine Buzzard, Mirasol Forcadela, Andrew Duncan, Anneke van der Walt, Wendyl D'Souza, Udaya Senvieratne, Richard Macdonell, Sudarshini Ramanathan, Stefan Blum, Stephen W Reddel, Todd A Hardy, Helmut Butzkueven, Terence J O'Brien, Rubina Alpitsis, Charles B Malpas, Mastura Monif
{"title":"The relationship between patient-reported quality of life and clinician-rated outcome scores in patients with autoimmune encephalitis: a study of the Australian Autoimmune Encephalitis Consortium.","authors":"Christina Kazzi, Nabil Seery, Sarah Griffith, Robb Wesselingh, Tiffany Rushen, Tracie H Tan, Katherine Y Ko, Liora Ter Horst, Genevieve Skinner, Laurie McLaughlin, Hannah Ford, Catherine Meade, Marie O'Shea, Katherine Buzzard, Mirasol Forcadela, Andrew Duncan, Anneke van der Walt, Wendyl D'Souza, Udaya Senvieratne, Richard Macdonell, Sudarshini Ramanathan, Stefan Blum, Stephen W Reddel, Todd A Hardy, Helmut Butzkueven, Terence J O'Brien, Rubina Alpitsis, Charles B Malpas, Mastura Monif","doi":"10.1007/s11136-025-04052-4","DOIUrl":"https://doi.org/10.1007/s11136-025-04052-4","url":null,"abstract":"<p><strong>Background: </strong>Patients with Autoimmune Encephalitis (AE) commonly report poor quality of life. There is a lack of evidence on whether clinician-rated outcome measures adequately capture patient-reported experiences. This study aimed to characterise long-term quality of life in AE patients and examine its relationship with clinician-rated disability (modified Rankin Score, mRS) and symptom severity (Clinical Assessment Scale in Autoimmune Encephalitis, CASE).</p><p><strong>Methods: </strong>Patients with AE were recruited through the Australian Autoimmune Encephalitis Consortium Project. Patients with completed NeuroQoL instruments, as well as CASE and/or mRS scores within 6 months of the NeuroQoL were included.</p><p><strong>Results: </strong>Fifty-four patients with AE (50% female, median age at symptom onset = 49.70 years) completed the NeuroQoL instruments at a median of 50 months (IQR: 18.25-87.50 months) post-disease onset. The median CASE score was 2 (IQR: 0.0-3.0). The median mRS was 1.5 (IQR: 1.0-2.0). In the total AE sample, CASE scores were positively associated with all NeuroQoL domains (r = .42-.53), except Fatigue (r = .28). Total NeuroQoL, Cognitive Function, Satisfaction in Social Roles and Activities, and Stigma T-scores were significantly higher in seropositive AE patients with an mRS > 2 (d = 0.94-1.66). The mRS significantly predicted most NeuroQoL domains in the total AE sample, and the CASE score explained little or no additional variance over and above mRS scores. Similarly, the CASE score was significantly associated with most NeuroQoL domains, with no additional variance explained by mRS scores.</p><p><strong>Discussion: </strong>The relationships between clinician-rated outcomes and domains of quality of life varied from weak to moderate. This highlights the importance of integrating clinical measures and patient-reported outcomes when assessing outcomes post-AE.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966272","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}
Emilie Katrine Kongebro, Christian Kronborg, Ketil Jørgen Haugan, Claus Graff, Søren Højberg, Derk Krieger, Axel Brandes, Lars Køber, Jesper Hastrup Svendsen, Søren Zöga Diederichsen
{"title":"The impact of screening-detected atrial fibrillation and associated outcomes on quality of life.","authors":"Emilie Katrine Kongebro, Christian Kronborg, Ketil Jørgen Haugan, Claus Graff, Søren Højberg, Derk Krieger, Axel Brandes, Lars Køber, Jesper Hastrup Svendsen, Søren Zöga Diederichsen","doi":"10.1007/s11136-025-04047-1","DOIUrl":"https://doi.org/10.1007/s11136-025-04047-1","url":null,"abstract":"<p><strong>Purpose: </strong>To investigate health-related quality of life (HRQoL) after atrial fibrillation (AF) detected by screening compared with conventional AF diagnosis.</p><p><strong>Methods: </strong>We used HRQoL data (EQ-5D-5L) from 6004 persons randomised to AF screening with implantable loop recorder and treatment (n = 1501) or to usual care (n = 4503). Annual assessments yielded individual EQ-5D-5L-index (worst=-0.76 best = 1.00) and EQ-VAS scores (Visual Analogue Scale, 0 = worst, 100 = best). Changes were estimated with linear mixed models from before to after incident AF, stroke, and major bleeding. Interaction analyses assessed differences between the randomisation groups.</p><p><strong>Results: </strong>During three years of follow-up, 693 of 6004 (12%) participants were diagnosed with AF (Screening: 424 of 1501 (28%), usual care: 269 of 4503 (6.0%)), with 636 alive at year three. For participants developing AF, the EQ-5D-5L index score in the screening group declined from 0.87 before to 0.85 after AF (p < 0.001), and from 0.83 before to 0.79 after AF (p < 0.001) in usual care, with less HRQoL decline in the screening group (p = 0.019). For patients developing stroke and major bleeding, the EQ-5D-5L index scores in the screening group declined from 0.82 to 0.78 (p < 0.001) and 0.82 to 0.76 (p < 0.001) before and after diagnosis, and from 0.84 to 0.76 (p < 0.001) and 0.85 to 0.76 (p < 0.001) in usual care, without differences between the randomisation groups. All EQ-VAS analyses yielded very similar results.</p><p><strong>Conclusion: </strong>AF detected through screening had little negative impact on HRQoL compared with AF detected by usual care. Stroke and major bleeding were followed by large HRQoL reductions, regardless of randomisation group.</p><p><strong>Trial registration: </strong>The LOOP study is registered at ClinicalTrials.gov, identifier: NCT02036450.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966325","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}
{"title":"Quality of life of primary caregivers by severity and control of children's asthma: a systematic review and meta-analysis.","authors":"Florian Tomini, Mathura Nagarajah, Sharumilan Ravindran, Borislava Mihaylova","doi":"10.1007/s11136-025-04042-6","DOIUrl":"https://doi.org/10.1007/s11136-025-04042-6","url":null,"abstract":"<p><p>This systematic review and meta-analysis examined how the quality of life (QOL) of primary caregivers of children with asthma varies according to asthma severity and control. We also compared caregiver QOL with that of caregivers of healthy children and explored variation across specific QOL domains. A comprehensive search was conducted in PubMed, Embase, Scopus, and Web of Science from inception to October 2023. Eligible studies reported caregiver QOL in relation to asthma severity, asthma control, or healthy controls. Study quality was assessed using the Newcastle-Ottawa Scale. QOL scores were standardised to a 0-100 scale (0 = lowest, 100 = highest) and synthesised using random-effects meta-analysis. Thirteen studies were included. Caregivers of healthy children had the highest QOL (79.63; 95% CI: 69.51-89.75), while those of children with severe persistent asthma reported lower scores (59.63; 95% CI: 55.26-64.00). QOL was also higher among caregivers of children with good asthma control (76.71; 95% CI: 67.58-85.84) compared to those with poor control (62.48; 95% CI: 50.15-74.81). Emotional well-being and activity limitations were the domains most consistently associated with severity and control levels. Caregiver QOL is associated with asthma severity and control. Our findings underscore the need for consistent symptom monitoring and management, and suggest that caregiver support should be a routine consideration in paediatric asthma care.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966251","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}
Kendyl Carlisle, Rebecca Kowalski, Aprill N Park, Salome Ricci, Kai Sun, Carrie Cunningham, Julia F Slejko, C Daniel Mullins, Yinin Hu
{"title":"Differences in health state valuation for small, low-risk thyroid cancer between general population and cancer survivors: a cross-sectional analysis.","authors":"Kendyl Carlisle, Rebecca Kowalski, Aprill N Park, Salome Ricci, Kai Sun, Carrie Cunningham, Julia F Slejko, C Daniel Mullins, Yinin Hu","doi":"10.1007/s11136-025-04033-7","DOIUrl":"https://doi.org/10.1007/s11136-025-04033-7","url":null,"abstract":"<p><strong>Purpose: </strong>A low-risk cancer characterized by slow growth and excellent prognosis, papillary thyroid microcarcinoma (PTMC) is increasingly managed with less invasive alternatives to surgical resection, including active surveillance and radiofrequency ablation. To inform shared decision-making and comparative-effectiveness models, treatment preferences/quality of life quantified by health utilities must be derived for PTMC. However, there is ambiguity regarding the population from which these should be elicited. We aimed to compare health state utility estimates for PTMC as derived from general population volunteers (GenPop) and thyroid cancer survivors (TCSurv).</p><p><strong>Methods: </strong>GenPop and TCSurv completed a time trade-off task for 10 PTMC health states described by clinical vignettes. Health utilities were compared between groups with univariate and multivariable linear regression, adjusting for age, sex, and income. Subgroup analysis was performed for health states with and without treatment complications.</p><p><strong>Results: </strong>70 GenPop and 72 TCSurv completed the surveys. GenPop reported lower utilities relative to TCSurv for all 10 health states, with an effect size of 0.044 attributed to participant group in the multivariable analysis (p = 0.01). This observation persisted in stratified analysis by treatment complication, with effect sizes 0.047 (p = 0.04) and 0.042 (p < 0.01) for uncomplicated and complicated groups, respectively. Health utilities were lower for complicated scenarios (effect size 0.067, p < 0.001) compared to uncomplicated scenarios.</p><p><strong>Conclusion: </strong>For 10 low-risk thyroid cancer health states, GenPop reported significantly lower health utilities than TCSurv. Health economists and healthcare delivery scientists should be aware of these differences when integrating health utilities into comparative-effectiveness research.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966343","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}
Olayinka I Arimoro, Lisa M Lix, Mark A Ferro, Matthew T James, Scott B Patten, Samuel Wiebe, Colin B Josephson, Tolulope T Sajobi
{"title":"Tree-based item-response theory model for evaluating differential item functioning in patient-reported outcome measures: a web-based R Shiny implementation.","authors":"Olayinka I Arimoro, Lisa M Lix, Mark A Ferro, Matthew T James, Scott B Patten, Samuel Wiebe, Colin B Josephson, Tolulope T Sajobi","doi":"10.1007/s11136-025-04046-2","DOIUrl":"https://doi.org/10.1007/s11136-025-04046-2","url":null,"abstract":"<p><strong>Purpose: </strong>The validity of inferences from patient-reported outcome measure (PROM) scores can be confounded by differential item functioning (DIF). DIF occurs when there is heterogeneity in how patients respond to and interpret questions about their health, despite having the same underlying health status. Ignoring the effects of DIF could lead to inaccurate interpretations and misinformed clinical decisions resulting in compromised healthcare delivery. Tree-based item response theory (IRT) models are recommended as an alternative class of methods for analyzing PROMs because they offer a robust approach for identifying DIF when covariates associated with DIF are unknown a priori.</p><p><strong>Methods: </strong>This paper introduces a web application developed using R Shiny, which enables users to implement tree-based IRT models for DIF assessment in potentially heterogeneous populations. The app provides flexible model specifications, visualization tools, and customizable settings to accommodate various data types and research needs. A practical tutorial is included, guiding users through the application interface, data preparation, model selection, and interpretation of results.</p><p><strong>Results: </strong>The web application (https://ucalgary-pcma-lab.shinyapps.io/tree_based_dif_analysis/) offers interactive data upload in .CSV and .XLSX data formats. Recommendations are provided for selecting model parameters within the app based on the results of previous simulation studies. The web app tests for DIF on dichotomous- and polytomous-scored items. The coefficients, item parameters, and plots provide insights into potential sources of DIF.</p><p><strong>Conclusion: </strong>This web application provides a user-friendly, interactive, innovative, easily accessible, and valuable tool for clinicians, applied health researchers, and analysts seeking to understand sample heterogeneity due to DIF in PROM data.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966287","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}
Zhuxin Mao, Aureliano Paolo Finch, Shenaz Ahmed, Guangjie Zhang, Yifan Ding, Zhihao Yang
{"title":"Exploring subjective constructions of quality of life in patients, carers and the healthy general public: a Q-methodological study.","authors":"Zhuxin Mao, Aureliano Paolo Finch, Shenaz Ahmed, Guangjie Zhang, Yifan Ding, Zhihao Yang","doi":"10.1007/s11136-025-04045-3","DOIUrl":"https://doi.org/10.1007/s11136-025-04045-3","url":null,"abstract":"<p><strong>Purpose: </strong>To explore similarities and differences in perceptions of quality of life (QoL) outcome, among different groups of populations, including patients, informal carers and the healthy general publics.</p><p><strong>Methods: </strong>This study used Q-methodology, which combined both qualitative and quantitative components, to investigate the subjective constructions of QoL across the groups. We developed a list of 35 Q-sample items and collected a total of 151 Q-sort data for use in the standard by-person factor analytic procedure designed for Q-methodology. We also conducted post-sort interviews and obtained qualitative information about why the participants ranked the statements in certain ways.</p><p><strong>Results: </strong>We were able to identify four distinct viewpoints: Factor 1: Eat, sleep and other basic needs; Factor 2: Positive relationships, belongings and well-being; Factor 3: My own physical and mental health first; Factor 4: Physical health is the foundation of well-being. While Factor 4 was equally valued across all three categories of participants, Factor 2, which places a high value on positive relationships, was predominantly represented by carers. In contrast, patients tended to emphasise Factor 3, which focuses on individual feelings-particularly emotional and physical distress. Items related to pain, discomfort, and sleep were consistently identified as the most important across all four identified views.</p><p><strong>Conclusions: </strong>This study presents the similarities and differences of the subjective constructions of QoL across patients, carers and the healthy general publics. It implies the variances of preferences in evaluating QoL, and such variances can consequently affect the measurement and evaluation of QoL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966315","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}
Travis Haber, Alessio Bricca, Michelle Hall, Jan Christian Brønd, Lau Thygesen, Søren T Skou
{"title":"Are physical activity, sleep, and joint pain associated with physical function and quality of life in individuals with multimorbidity? A cross-sectional analysis of the MOBILIZE trial.","authors":"Travis Haber, Alessio Bricca, Michelle Hall, Jan Christian Brønd, Lau Thygesen, Søren T Skou","doi":"10.1007/s11136-025-04044-4","DOIUrl":"https://doi.org/10.1007/s11136-025-04044-4","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-08-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144804635","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}