Quality of Life Research最新文献

Purpose: Although caregivers for patients with end-stage liver disease (ESLD) experience adverse physical and psychological outcomes, little is known about how these experiences change over time. The aim of this study was to identify trajectories in physical and psychological outcomes in caregivers for adults with ESLD over the course of 12 months.

Methods: Informal caregivers (age ≥ 18 years) were recruited from liver clinics within two medical centers. Survey data were collected at baseline and every 3 months for 12 months. Caregivers completed the Multidimensional Caregiver Strain Index, Pittsburgh Sleep Quality Index, Patient Health Questionnaire, Mishel Uncertainty in Illness Scale for Family Members, Short Form Health Survey, and Multidimensional Perceived Social Support Scale.

Results: The sample (N = 186, age 56.7 ± 13.2 years) were predominantly female (75.3%) and White (89.2%). Caregiver sleep quality and depressive symptoms did not change, whereas care-related strain (p = 0.001) and uncertainty (p = 0.001) improved significantly over time. Spousal caregivers had significantly worse mental quality of life (QOL) at baseline (p = 0.006) compared to non-spousal caregivers. Spousal caregiver mental QOL improved over time, whereas there was no change in mental QOL of non-spousal caregivers (p = 0.025). Relationship quality and female gender were associated with worsening physical QOL over time (p = 0.011 and p = 0.012, respectively).

Conclusion: To maintain or improve caregivers' abilities to provide care, healthcare professionals should provide resources to caregivers. Future research should include longitudinal, dyadic studies and focus on interventions for improving caregiver physical and mental QOL.

Purpose: There is a growing need to understand how cultural, relational, and contextual factors shape the quality of life (QOL) and well-being of caregivers of children with special health and medical needs in East Asia. Currently, no culturally grounded conceptual framework exists, and the unique demands of caring for developmentally dependent children present distinct challenges. This study aimed to identify key factors influencing caregiver QOL and well-being in this context.

Methods: We conducted a systematic review of qualitative studies examining QOL among caregivers of children with chronic or life-threatening conditions in East Asia. The databases searched included MEDLINE, Cochrane, EMBASE, PsycINFO, CINAHL, and Ichushi (to June 2024). Studies were included if they addressed informal caregiving for children and focused on QOL or well-being in East Asian countries. Existing reviews were used to identify relevant studies, with an additional search conducted for Japan. We applied a framework synthesis approach guided by the EQ-HWB conceptual model. Risk of bias was assessed using the CASP Qualitative Studies Checklist.

Results: Fourteen studies met the inclusion criteria. Ten core themes emerged, including emotions, activity, role, social and family relationships, functioning, financial strain, and parenting. Role, family ties, and parenting were especially prominent in East Asian contexts.

Conclusions: Caregivers' experiences were deeply influenced by cultural factors such as collectivism, traditional norms, and stigma. These findings underscore the importance of culturally sensitive frameworks to assess caregiver QOL and to inform policies and interventions in East Asian health and social systems.

Purpose: To systematically evaluate the measurement properties of Chinese versions of HRQOL scales for stroke and provide evidence-based recommendations for clinical and research use.

Methods: Ten databases (e.g., CNKI, VIP, PubMed, Embase) were searched from inception to September 2024. Studies evaluating the measurement properties of Chinese HRQOL scales for stroke patients were included. Two researchers independently screened, extracted data, and assessed measurement properties and methodological quality using COSMIN standards.

Results: Thirty-seven studies were included, reporting on content validity, structural validity, internal consistency, reliability, hypotheses testing for construct validity, responsiveness, and measurement error. Two tools demonstrated sufficient content validity and at least low-quality evidence of sufficient internal consistency (Category A), while 17 were classified as Category B.

Conclusions: Although diverse, the overall quality of Chinese versions of HRQOL scales is suboptimal, and further studies are needed. MHIEC-ST and SAQOL-39 g are recommended, with further measurement properties studies needed to refine and enhance these tools.

Purpose: The study aimed to assess the interconnection of quality of life (QoL) variables and identify key areas for which interventions could improve QoL among men who have sex with men (MSM) living with HIV on antiretroviral therapy (ART).

Methods: A cross-sectional study was conducted in Jinan of Shandong Province, between October to December 2020. Undirected network analyses were conducted to examine and visualize the interconnections between QoL variables among MSM living with HIV. Centrality indices, including strength, betweenness, closeness, and expected influence (EI), were calculated to quantify the importance of each variable in the network. A network comparison test was used to assess differences between networks of individuals who initiated ART before and after the introduction of "Treat-All" strategy, comparing network structure, edge strength, and global strength.

Results: A total of 584 participants were included, with an average overall QoL score of 87.80±12.75. At the domain level, psychology (EI=1.04) emerged as the most central domain within the QoL network. At the item level, satisfaction with the ability to perform activities of daily living showed the highest EI (1.25), followed by access to information (EI=1.12). No significant differences were observed in network structure (Test statistic M=0.21, P=0.317) and global strength (Test statistic S=0.64, P=0.056) between the networks for men who initiated ART before and after the introduction of "Treat-All" strategy.

Conclusion: Psychological well-being emerged as the most central QoL domain for MSM with HIV on ART, with daily living abilities and information access being key aspects. Thus, HIV care should incorporate interventions improving these and mental health.

Purpose: Typically, cost-effectiveness analyses use societal utility weights for health states. These anticipated utility weights are derived from asking the general population to assess the impacts of hypothetical health states on their quality-of-life. This study evaluates how these weights align with real-world self-reported experienced health statuses.

Methods: We compared the self-reported health statuses of approximately 30,000 Argentine respondents from the nationally representative National Risk Factors Survey to their corresponding derived health-related quality of life (HRQoL) using social utility weights estimated by Augustovski et al. (Value Health 12:587-596, 2009) for this population. Survey weights ensured national representativeness. We modeled the relationship between these derived HRQoL and the probability of self-reported health states (ranging from poor to excellent) using a multinomial logistic regression with various nonlinear specifications, selecting models via AIC and BIC.

Results: The analysis revealed a distinct non-monotonic relationship between HRQOL and probabilities of self-reported "poor" and "good" health statuses. The non-monotonicity was found over the lower range of HRQOL values up to 0.16, where the likelihood of "poor" ("good") health increased as HRQoL increased (decreased). A positive monotonic relationship was found for "very good" and "excellent."

Conclusions: The findings indicate a discrepancy between societal HRQOL weights and patient-reported outcomes at lower health levels. This discrepancy may reflect that the general population underestimates the burden of severe health conditions rather than patient adaptation, as adaptation is unlikely to translate into experiencing good or better health when true health is poor. Our results suggest that the field of cost-effectiveness should consider patients' experienced utility weights.

Introduction: The EuroQol health and well-being instrument (EQ-HWB™) measures quality of life (QoL) outcomes in health, public health, and social care settings. Its conceptual framework is rooted in QoL theory, a multidimensional concept encompassing social, psychological, and physical aspects influenced by cultural factors. The content validity of the EQ-HWB remains unexplored in China. This study addressed this gap through qualitative interviews with Chinese laypeople, uncovering their QoL conceptual framework and comparing it with the EQ-HWB's to evaluate how well it captures its intended outcomes.

Methods: Quota sampling recruited respondents from two regions in China, ensuring diversity in age, gender, education, health conditions, and caregiving experience. Semi-structured qualitative interviews were conducted, transcribed verbatim, and analyzed by two coders using a thematic framework approach. The coders refined codes through consensus, removed irrelevant ones based on set criteria, and organized the remaining codes into sub-themes and themes to develop a Chinese QoL conceptual framework. Lastly, this Chinese QoL framework was compared with the EQ-HWB conceptual framework.

Results: Thirty respondents were recruited and interviewed, achieving data saturation in the last three interviews. From 221 initial codes, 187 were retained to develop a conceptual framework comprising eight themes: feeling and emotion, cognition, self-identity, coping, physical sensation, relationship, activity, and mindset. This framework largely aligned with the EQ-HWB conceptual framework, except for the absence of the 'mindset' theme.

Conclusion: The conceptual framework of the EQ-HWB is well-represented within the QoL framework. The findings support the content validity of the EQ-HWB among laypeople in the Chinese context.

Purpose: Adults with beta-thalassemia major (BTM) and comorbidities may experience poorer quality of life (QoL), while healthy diet are suggested to improve chronic disease management and health outcomes. The purpose of this study was to explore how healthy diet can impact QoL among adults with BTM, and whether healthy diet can buffer the impact of comorbidities on QoL of this population.

Methods: Cross-sectional data of 317 adults (18 years old or older) with BTM in Vietnam was analysed. Healthy eating scores was measured by Healthy Eating Scores-5 scale. Four domains of QoL (physical health, psychological, social relationships, and environment) were assessed using the 26-item Quality of Life scale (WHOQOL-BREF). Multivariable linear regression was used to assess the association of interest and its moderation between healthy eating scores and comorbidity status (yes/no).

Results: Individuals with BTM and comorbidity had significantly a lower QoL score in physical health and social relationships domain than those without comorbidity. This association was inversely moderated by healthy eating scores, specifically in physical health, psychological, and environment domain. As individuals had higher scores in healthy eating, the difference in QoL scores in the three domains above between individuals with and without comorbidities reduced.

Conclusion: Individuals with BTM and comorbidities have a poorer quality of life. However, encouraging a healthy diet could mitigate this risk. Healthcare system should include dietitians and family caregivers in chronic care management for patients with BTM.

Purpose: The EuroQol Health and Wellbeing Short (EQ-HWB-9) is a new, generic 9-item instrument, suitable for evaluating interventions in health and social-care settings for patients and caregivers. The instrument now requires validation across general and caregiver populations. Informal caregiving can be time-intensive and impact caregiver's physical and mental well-being. However, caregiver outcomes are often overlooked in healthcare decisions, which can lead to inefficient resource allocation. We aimed to examine the psychometric performance of the EQ-HWB-9 in a general population dataset, including caregivers of persons with disability/chronic illness.

Methods: Using general population samples, stratified by age, gender, region, ancestry, and income for Australia and New Zealand, we investigated EQ-HWB-9 item distribution and known-group validity (t-tests; Cohen's d for effect size, with sub-group analysis by country, gender and age) across sum-scores and UK pilot preference-weighted scores. Item scores were compared across caregiver groups. Convergent validity was assessed between the EQ-HWB-9 and the Kessler-6 using Spearman's Rho.

Results: The sample included 2542 participants, 2018 from Australia and 524 from New Zealand. Item distribution was similar to previous studies. Known-group validity results aligned to a priori hypotheses for caregiver, mental health, physical health and disability and sleep issues variables. Caregivers had significantly higher scores across each item than their counterparts. Convergent validity conformed to a priori expectations.

Conclusion: The EQ-HWB-9 appears valid in this general population setting. This study helps to build the evidence for the use of the instrument across diverse settings. Australian- and New Zealand-specific value-sets would be a good future addition.

Objective: The EQ-DAPHNIE (EuroQol Data for Assessment of Population Health Needs and Instrument Evaluation) project is a large, multi-country survey initiative designed to generate population norms and enable comparative research using self-reported health measures. This paper describes the quality control processes and summarizes data quality metrics from the United Kingdom (UK) pilot and full implementation across 15 countries.

Methods: Representative samples were recruited via Dynata, an online survey panel provider, using quota sampling by age, sex, income, community setting, and language (where applicable). The UK pilot (n = 3012) informed survey refinements ahead of full rollout (n = 68,411). Quality metrics included completion rates, bot detection, speeding, missing data, outliers, and quota achievement.

Results: Across countries, response rates ranged from 80.1 to 100%, with completion rates varying widely (22.9% in Brazil to 60.8% in Japan; average 42.4%). Bot exclusions averaged 3.0%, peaking in China (11.7%). Speeding was low (0.3% average), and duplicate records were rare. Completion times ranged from 18.3 (France) to 31.4 min (New Zealand). Missing data varied substantially (0.0-48.7%), with Japan and Spain showing the least. Quota fulfillment ranged from 68.7 to 98.6%. Consistency checks showed strong agreement for repeated items-marital status (92.8-98.9%) and age (92.3-98.7%).

Conclusions: The quality control measures implemented throughout the EQ-DAPHNIE project effectively addressed common issues such as bot responses, speeding, and missing data, resulting in generally high-quality and representative datasets. However, variability across countries underscores the need to account for quality indicators when using the data for norm-setting or cross-country comparisons.