Quality of Life Research最新文献

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.

Purpose: Unlike previous reviews on quality of life (QoL) and substance use disorders (SUD), this scoping review focuses on QoL within the context of SUD treatment and active substance misuse. This review delineates and describes QoL measures, assesses their application, and explores the influence of demographics on QoL outcomes.

Methods: Five databases were searched (EMBASE, Web of Science, PsycINFO, PubMed, and Scopus) using keywords related to QoL, clinician-verified SUD, and SUD treatment. All studies were published in English before June 1st, 2025. Two reviewers screened abstracts and full text for eligibility and study elements. The first author extracted data regarding methodology, substance use, treatment, and QoL measures. The PRISMA-ScR checklist guided this study and the reporting process for rigor and transparency.

Results: Of the 11,078 initially identified articles, 108 were extracted for analysis. QoL measures accounted for multiple domains (e.g., physical, psychological, social, environmental, independence, security, and spiritual). Studies included male and female participants, all over the age of 18. Results found that many studies under-reported race, ethnicity, and cultural contexts, as well as high variability in the definition of QoL domains and standardization across treatment locations and geographic regions. Studies from Asia primarily showed preference for the WHOQOL-BREF measure compared to North America and Europe, which showed varied preference for measures. The most common QoL domains assessed were psychological, physical, and social.

Conclusion: This review highlights the need to operationalize QoL domains and assessment approaches in SUD treatment research to facilitate meaningful comparisons and enhance our understanding of treatment effectiveness.

Objectives: Very preterm (VP, < 32 weeks gestation) birth and very low birth weight (VLBW, < 1500 g) are distinct but overlapping risk factors with different clinical implications. We aimed to investigate the separate and combined impacts of being born VP and/or VLBW on health-related quality of life in early and mid-adulthood.

Methods: We analyzed data from the Dutch Project on Preterm and Small-for-gestational-age infants (POPS), a national prospective cohort of individuals born in 1983. Participants were categorized into three groups: (1) VP & VLBW, (2) VP-only, and (3) VLBW-only. We used the Health Utilities Index Mark 3 at ages 19 and 28, and the Short Form 6-Dimension at age 35 to assess multi-attribute utility (MAU) scores and domain-level functioning. Adjusted linear regression models were used, controlling for covariates and employing inverse probability weighting to account for attrition.

Results: Overall MAU scores did not consistently differ between the exposure groups and the VP & VLBW reference group at any time point. However, specific domain-level differences emerged in early adulthood. At 19 years, the VLBW-only group reported significantly better speech functioning (β = 0.11, p = 0.01). At 28 years, the VP-only group had better hearing (β = 0.05, p = 0.04), while the VLBW-only group had worse ambulation (β =  - 0.12, p < 0.01). By 35 years, these inter-group differences were no longer statistically significant. Female sex was a consistent predictor of poorer outcomes in several domains by age 35. Attrition-weighted models produced nearly identical results.

Conclusions: VP and VLBW are not interchangeable risk categories. While overall HRQoL scores converged by mid-adulthood, distinct domain-specific and sex-based disparities were evident earlier in life. Our findings highlight the need for tailored interventions over a homogenous approach. Future research with consistent measures is required to confirm if this convergence persists over the life course.

Purpose: Systematic reviews of outcome measurement instruments (OMIs) are an important tool to guide the selection of OMIs for research and clinical practice. However, presenting the large amount of complex data pertaining both to the quality of each study (i.e., risk of bias) as well as the quality of the instrument (i.e., measurement properties), along with the underpinning certainty of evidence, is challenging. Here, we aim to provide guidance on optimizing data presentation in OMI systematic reviews, specifically focusing on patient-reported outcome measures (PROMs).

Methods: A multidisciplinary team of experts in OMI systematic reviews, research reporting, and data visualization built on existing table templates from OMERACT and the COSMIN initiative, to align with reporting items in a recently developed reporting guideline for systematic reviews of OMIs: PRISMA-COSMIN for OMIs 2024. To enhance clarity and usability, we applied data visualization principles by reducing non-essential elements and improving interpretability through structured layouts and concise explanatory text.

Results: We present eight templates for reporting PROM systematic review results: three pertain to PROM characteristics, two to studies' characteristics, two to the evaluation of measurement properties, and one to the summary of findings. We also provide recommendations on whether to include these templates in the review's main manuscript or in the supplementary materials. Word versions of these templates can be downloaded from www.prisma-cosmin.ca and www.cosmin.nl .

Conclusion: Templates complementing the PRISMA-COSMIN for OMIs 2024 reporting guidance can be used to standardize and enhance the clarity and usefulness of OMI systematic reviews focusing on PROMs. They comprise a comprehensive set of tools to effectively report OMI systematic reviews, in service of end-users who are selecting OMIs.

Background: 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).

Methods: 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.

Results: 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.

Discussion: 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.

Purpose: To investigate health-related quality of life (HRQoL) after atrial fibrillation (AF) detected by screening compared with conventional AF diagnosis.

Methods: 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.

Results: 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.

Conclusion: 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.

Trial registration: The LOOP study is registered at ClinicalTrials.gov, identifier: NCT02036450.

Purpose: Little is known about the health-related quality of life (HRQOL) of single-person households. We evaluated the physical and mental health impairment associated with household arrangements.

Methods: We conducted a cross-sectional analysis of 2014-2023 Behavioral Risk Factor Surveillance System (BRFSS) data. We included individuals aged ≥ 18 years and categorized household living arrangements into single-person, two or more adults, single-parent with children, parents with children, and others. Study outcomes included physically and mentally unhealthy days for measuring HRQOL using the Healthy Days Measures. Survey logistic regression models were used to estimate HRQOL for each household living arrangement, controlling for sociodemographic and clinical variables.

Results: Among 1,532,179 individuals, 23.2% and 10.5% were single-person households and parents with children households, respectively. Single-person households had a significantly lower physical (adjusted odds ratio [aOR] 1.25, 95% confidence interval [CI] 1.18-1.33) and mental health (aOR 1.33, 95% CI 1.25-1.41) compared to parents with children. For physical health, compared to parents with children, single female households showed higher aOR (aOR 1.36, 95% CI 1.25-1.48) than single male households (aOR 1.10, 95% CI 1.00-1.21); particularly, single female households aged ≤ 44 years showed higher OR for physical health (aOR 1.43, 95% CI 1.21-1.69). Mental health was significantly reduced in both male (aOR 1.32, 95% CI 1.20-1.46) and female (aOR 1.30, 95% CI 1.21-1.40) single households.

Conclusions: Single-person households had poorer physical and mental health, especially the physical health of young single women, highlighting the need for further longitudinal research to explore potential causal relationships.

Purpose: The purpose of this study was to understand health-related quality of life (HRQOL) factors for adults who experience major extremity trauma, including limb preservation and amputation, to guide the selection and creation of patient-reported outcome (PRO) measures.

Methods: A thematic content qualitative analysis was used to study service members (SMs) with a history of major extremity trauma and clinical providers with expertise in limb trauma, limb loss, and limb preservation/reconstruction. Focus groups were conducted at three Military Treatment Facilities and one Department of Veterans Affairs Medical Center.

Results: Fifty-six SMs and 34 clinicians participated. Thirty-six percent of focus group comments were coded under Physical Health, 31% Emotional Health, and 28% Social Participation. These results were largely consistent across clinicians and SMs, and clinical subgroups, with a few exceptions such as the relevance of fine motor tasks and prosthetic devices for SMs with upper extremity injury/limb loss, and orthotic devices for SMs with limb preservation/reconstruction.

Conclusion: Many HRQOL topics identified are shared with existing general PRO measures-including pain, physical function, anxiety, depression, anger, positive affect and well-being, fatigue, social participation, and loneliness-as well as rehabilitation-focused PRO measures-such as resilience, grief/loss, stigma, self-esteem, mobility, fine motor functioning, self-care, and independence. This qualitative research can be used to inform domains of HRQOL in need of new PRO measures for this population, including satisfaction with orthosis/prosthesis, satisfaction with physical abilities/athleticism, body image, future outlook, and vocational impact.