Quality of Life Research最新文献

Purpose: This study assessed patient-reported health-related quality of life (QOL) in a real-world cohort of patients with ischemic stroke and estimated utility-weighted modified Rankin Scale (UW-mRS) scores.

Methods: We included 1452 patients with ischemic stroke (median age: 75 [67-83] years; 41.0% female) from a multicenter hospital-based stroke registry in Japan. QOL was evaluated using the EQ-5D-5L with Japanese-specific utility values. Both EQ-5D utility values and mRS scores were assessed after completion of acute treatment. UW-mRS scores were estimated using ordinary least squares (OLS) and Tobit regression models.

Results: The mean (SD) EQ-5D utility value was 0.68 (0.27). Higher mRS scores were associated with greater severity and frequency of problems across EQ-5D domains, with a marked decline observed between mRS scores 3 and 4. UW-mRS scores estimated by OLS were: mRS 0: 0.90, mRS 1: 0.85, mRS 2: 0.74, mRS 3: 0.62, mRS 4: 0.41, and mRS 5: 0.28. The Tobit model yielded slightly higher values for mRS 1-3. UW-mRS estimates remained largely consistent across other regression models (fractional logit/probit, beta regression, and two-part models). However, UW-mRS values differed between early (≤ 14 days from onset) and late (> 14 days) assessments and varied considerably when utility values were calculated using tariffs from other countries or with the EQ-5D-3L crosswalk.

Conclusion: In this real-world, consecutive cohort of hospitalized Japanese patients with ischemic stroke, utility values were estimated using the EQ-5D-5L, and the UW-mRS was characterized as a practical tool for deriving utility values from mRS scores.

Purpose: This study aimed to address an evidentiary gap by exploring caregivers' lived experiences of spontaneous preterm birth (sPTB) resulting from spontaneous preterm labor (sPTL) and characterize the most relevant health-related quality of life (HRQoL) impacts. Insights were used to develop a conceptual model.

Methods: Qualitative concept elicitation interviews were conducted with 24 primary caregivers in the United States, diagnosed with sPTB between 23 and 36 weeks' gestational age (GA) resulting from sPTL. Interview transcripts were thematically analyzed.

Results: During pregnancy, caregivers commonly reported physical and emotional changes, and limited awareness of sPTL. Many did not recognize their signs and symptoms of sPTL onset as indicative of labor, and described a lack of choice regarding sPTL treatment. Caregivers consistently described neonatal outcomes as central to maternal HRQoL. Those who gave birth at lower GAs typically reported more frequent short-term and longer-term neonatal health or developmental problems, longer NICU stays, and worse NICU experiences. Maternal HRQoL impacts persisted well beyond the neonatal period, with emotional wellbeing remaining the most impacted domain in both the short-term (from delivery to 28 days following caregivers' estimated date of delivery [EDD]) and longer-term (from 28 days to two years post-EDD).

Conclusion: This study centralizes the caregiver perspective, which is imperative to improving maternal outcomes. Caregivers' experiences (particularly of neonatal outcomes such as length of NICU stay) are integral to shaping maternal HRQoL. Increased awareness of sPTL signs and symptoms, and enhanced sPTL management strategies, are needed to improve both maternal and neonatal outcomes.

Objective: The spillover effects of health issues are widespread, may be especially for vulnerable groups who are more dependent on their families. While the importance of spillovers in resource allocation decisions is increasingly recognized, the empirical evidence in China is generally limited. This study aimed to estimate the health spillover effects among household members of adolescents (8-17 years) and elderly individuals (≥ 60 years) with health issues in China.

Methods: Data were obtained from the 2023 Health Service Survey conducted in Tianjin, one of China's four municipalities. Health issues included diagnosed chronic disease, illness within two weeks, unintentional injuries or any hospitalizations in the past year. The absolute spillover effects were evaluated by comparing EQ-5D-5L utility values between household members exposed/unexposed to adolescent/elder individuals with health issues. The relative spillover effects were estimated using the ordinary least square regression (OLS) model.

Results: More household members exposed to adolescents with health issues reported anxiety/depression problems than those unexposed (8.6% vs. 3.1%, p < 0.05), though no significant utility difference was found (adjusted Coef. = 0.055, p > 0.1, SE = 0.291). Exposure to elderly individuals with health issues was associated with increased reports of pain/discomfort (20.7% vs. 14.7%, p < 0.05) and anxiety/depression (8.8% vs. 4.6%, p < 0.05), with a significant spillover effect of 0.044 (p < 0.05, SE = 0.022).

Conclusions: Focusing on adolescents and the elderly with health issues, this study offers population-based evidence of health spillover effects within Chinese households. These findings support the existence of spillover effects in the Chinese context and offer benchmark estimates to inform public health policy.

Purpose: Regular and flexible assessments of patients' physical status remain a significant challenge in clinical care and treatment. Whether measurement items in established Patient-reported outcome (PRO) questionnaires can be used independently to assess physical status remains unclear. This study aimed to evaluate the clinimetric validity of the independent use of a single-item walking measure.

Methods: Participants were recruited from a prospective cohort of patients undergoing lung surgery. On postoperative days 1 and 2 (POD 1 and 2), the patients' physical condition was assessed using the Perioperative Symptom Assessment for Lung surgery (PSA-Lung) and the single-item walking measure (SI-walking) derived from these questionnaire. A one-hour washout period separated the assessments. The objective measure of Timed Up and Go Test (TUGT) was performed on POD2.

Results: Of the 214 patients, 181 and 117 completed PSA-Lung and SI-walking on POD1 and POD2, respectively. The mean SI-walking score was higher than the mean PSA-Lung walking (MI-walking) score (4.44 ± 2.38 vs 3.64 ± 2.66, P < 0.001, Cohen's d effect size [ES] = 0.26). TUGT was completed by 111 patients with an average time of 15.17 ± 4.01 s. TUGT had a greater correlation with SI-walking (R_SI = 0.61, P < 0.001) than with MI-walking (R_MI = 0.31, P = 0.001) scores. ES regarding changes in walking function between POD1 and POD2 were higher with SI-walking (5.14 ± 2.37 vs 3.35 ± 1.97, P < 0.001, ES = 0.81) than with MI-walking (4.15 ± 2.77 vs 2.85 ± 2.28, P < 0.001, ES = 0.50). SI-walking (P = 0.002) was better than MI-walking (P = 0.116) in distinguishing hospitalization length.

Conclusions: The SI-walking scale demonstrates validity for measuring physical status. The independent use of a single-item walking measure from an established PRO questionnaire is valid in patients after thoracic surgery.

Purpose: Health-Related Quality of Life (HRQoL) is an important outcome in health services research, but the suitability of generic HRQoL instrument for mental health populations is debated. This study investigates how clinical mental health dimensions (Norse Feedback, NF) supplement the generic HRQoL instruments (EuroQol five-dimensions five-level, EQ-5D-5 L) to explain their subjective well-being, defined by self-rated health (EuroQol Visual Analogue Scale, EQ-VAS) and life satisfaction.

Methods: In a cross-sectional study, 307 adults in specialized mental health treatment in Norway completed the EQ-5D-5 L and the modified NF. We compared a baseline regression model using only EQ-5D-5 L dimensions with a comprehensive model using factors derived from an Exploratory Factor Analysis of all 33 combined dimensions: 5 from EQ-5D-5 L and 28 from NF.

Results: Factor analysis yielded five factors, two of which ('Behavioral problems/externalizing' and 'Social/life stability') consisted exclusively of clinical dimensions not captured by the EQ-5D-5L. A comprehensive model using these factor scores significantly improved explanatory power over a baseline EQ-5D-5L model. The adjusted R² increased by 8.4% points for EQ-VAS (from 23.5 to 31.9%) and by 17.3% points for life satisfaction (from 41.1% to 58.4%). The dominant 'Psychological distress' factor was key to this improvement, integrating the single EQ-5D-5L 'Anxiety/depression' dimension with eleven clinical dimensions like Internal avoidance and Hopelessness.

Conclusion: While the EQ-5D-5 L is valuable, its assessment of well-being in this population is significantly enhanced by incorporating some clinical dimensions. Particularly, mental health-specific dimensions such as Internal avoidance, Intrusive memories, Self-contempt and Hopelessness played crucial roles to understand the gap between generic HRQoL and their sense of overall well-being.

Purpose: This study investigated the relationships between socioeconomic status (SES), housing conditions, BMI z-score, food availability and consumption, food insecurity, and health-related quality of life (HRQoL) in schoolchildren aged 5 to 10 years living in rural riverine communities.

Methods: This school-based cross-sectional study included 128 parent-child dyads living in rural riverside in the city of Coari, Amazonas, Brazil. SES, housing conditions, household food availability, consumption of ultra-processed foods and food insecurity data were gathered from children's parents. Children's nutritional status (BMI z-scores), diet quality and HRQoL [Kiddo-KINDL] were also assessed. Direct and indirect relationships between variables were examined through structural equation modelling.

Results: Food insecurity was directly linked to poorer HRQoL. Worse socioeconomic status, lower availability of food at household, and poorer child's diet quality were directly linked to food insecurity. Greater household food availability, higher children's BMI z-score, and worse diet quality were directly linked to higher socioeconomic status. Availability of food at home was directly associated with higher consumption of ultra-processed foods, which, in turn, was directly associated with poorer diet quality. Food insecurity mediated the indirect associations of socioeconomic status, availability of food at household, consumption of ultra-processed foods, and diet quality with HRQoL.

Conclusion: The present findings elucidate the complex pathways between socioeconomic inequalities, food access and availability, diet quality, and children's quality of life.

Background: Managing health-related quality of life (HRQoL) in patients with metastatic breast cancer (MBC) is crucial due to the physical, emotional, and social burdens of disease and its treatments. This study examined the HRQoL of patients with MBC and compared the patients' perspectives of two validated tools-the Functional Assessment of Cancer Therapy - Breast (FACT-B) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire QLQ-C30 with its breast cancer-specific module QLQ-BR42 (EORTC) to determine which is most suitable for assessing HRQoL in patients with MBC.

Methods: A qualitative study design was used to explore patients' HRQoL and their perspectives on the two questionnaires, FACT-B versus EORTC, focusing on what matters most to the patients. Individual interviews were conducted between September and December 2024 at the Department of Oncology, Odense University Hospital, Denmark. Thematic analysis was selected to extract and analyze data.

Results: Fifteen women with MBC were included. Median age was 62 years (range 28-79), and the median duration of the interviews was 21 min (range 13-32 min). The analysis identified three main themes: (1) Living with metastatic disease, when incurable cancer is a life condition, (2) Design of the questionnaires, 3) Content of the questionnaires. Participants described impaired HRQoL, as they were hindered in living an everyday life, felt lonely at times, engaged in protective buffering, and lived in fear of the next scan. Overall, the participants found the design of the two questionnaires acceptable; neither was preferred over the other. However, regarding the content, the participants expressed a clear preference for FACT-B over the EORTC, primarily due to its greater relevance to their current situation, reflecting everyday life and need for support.

Conclusions: Participants in this study reported impaired HRQoL, marked by disrupted daily life, loneliness, protective buffering, and scanxiety. They preferred the FACT-B over the EORTC questionnaire for measuring HRQoL because of its focus on personal and emotional aspects, which reflected their lived experiences. However, further research is warranted to validate these findings in more diverse populations in the metastatic breast cancer context.

Background: Children with cardiac channelopathies face significant challenges, including exposure to medical trauma, complex genetic testing options, activity restrictions, lifelong surveillance, and increased risk of sudden death. This study assessed parental perceptions of child health-related quality of life (HRQOL) and unmet cardiac care needs, as well as predictors of traumatic stress among parents of children with a cardiac channelopathy.

Methods: Parents of children diagnosed with Long QT Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia, or Brugada Syndrome were invited to participate in a cross-sectional study. Sixty-eight parents from 45 families (response rate: 75%) completed measures assessing child HRQOL, unmet cardiac care needs, and parent symptoms of traumatic stress, anxiety, and depression.

Results: Prior to attending their first multidisciplinary arrhythmia clinic, parents reported an average of 12 unmet needs. Half of mothers (50%) and 38% of fathers indicated their child was at-risk in terms of emotional functioning. Having a cardiac implantable electronic device, lower social support, and greater parental psychological stress predicted lower child HRQOL. Child out-of-hospital cardiac arrest was the strongest predictor of parent post-traumatic stress.

Conclusions: Psychosocial screening and access to integrated, trauma-informed, family-centered psychological care should form part of best practice recommendations for children with cardiac channelopathies.