Health and Quality of Life Outcomes最新文献

Background: Health-related quality of life (HRQoL) is a crucial patient-centred outcome for developing policy. However, there is a lack of appropriate HRQoL measures for young children (0-5-years), who are particularly vulnerable to respiratory illnesses like pulmonary tuberculosis (PTB) and other respiratory infections, especially in low- and middle-income countries (LMICs). We aimed to develop a disease-specific HRQoL item bank for young children with acute and chronic respiratory illnesses.

Methods: An exploratory sequential design with three phases was used to develop a HRQoL item bank. The content validity of the item bank was evaluated by local and international experts specialising in HRQoL and child health. The group included paediatric pulmonologists, researchers with expertise in respiratory illnesses, and experts in scale development. Cognitive interviews with 37 caregivers of children with TB, pneumonia, adenovirus respiratory infection, other lower respiratory tract infections, reactive airway disease, and protracted bronchitis in Cape Town, South Africa, and consultations with 22 stakeholders were conducted for final revisions. The item bank was progressively refined at each phase of the study.

Findings: The Delphi experts recommended dividing the item bank into two age groups (0-2-years and 3-5-years) and using a 5-point Likert scale. Overall, 41 items (42%) met the predetermined > 70% threshold for inclusion in the item bank. Cognitive interviews confirmed that the domains were relevant. Minor modifications were made to five items in cohort 1 (0-2-years) and seven in cohort 2 (3-5-years), with 8 items (13%) and 14 items (22%) excluded. Phase 3 consultations emphasised the importance of including all seven domains and expanding the items to cover early childhood development, play, social interactions, and care routines. The final item bank includes versions for both age groups and incorporates these refinements.

Conclusion: An item bank was developed as a first step to develop a comprehensive disease-specific HRQoL tool for young children with respiratory illnesses in an LMIC. Input from caregivers and content experts was crucial in creating two HRQoL item banks tailored to the developmental differences between 0 and 2 and 3-5-year age groups. Their contributions ensured the tool effectively captures age-appropriate aspects of HRQoL. Future studies should focus on assessing the validity and reliability of these item banks.

Background: Transfusion-dependent β-thalassemia (TDT) is a severe inherited disorder. Without regular treatment, patients with TDT experience complications that can significantly shorten life expectancy and severely impact both their quality of life and that of their families. The condition has attracted significant attention in global health discussions. Due to the challenges of blood supply shortages, the high costs of iron chelation therapy, and hematopoietic stem cell transplantation (HSCT), TDT presents a serious health risk to patients and imposes a substantial burden on families and society. However, research on the health-related quality of life (HRQoL) of thalassemia patients in China remains limited. This study evaluated the factors affecting the HRQoL of these patients, with the goal of developing strategies to improve their quality of life.

Methods: In this cross-sectional study, children with TDT were recruited from five treatment centers in Guangxi, a province with a high prevalence of thalassemia in China. Structured questionnaires were employed to gather relevant data on sociodemographic variables, disease characteristics, treatments, and associated costs. The HRQoL was assessed using the Transfusion-Dependent Quality of Life (TranQoL) questionnaire, with a proxy version for patients aged 0-11 years and a child version for those aged 12-18 years.

Results: The study included 418 participants, yielding an overall TranQoL score of 60.6 ± 16.3 among thalassemia patients. Multiple linear regression analysis revealed a negative correlation (P < 0.05) between overall TranQoL scores and several factors: increasing patient age, the presence of multiple thalassemia patients within a family, and undergoing HSCT. Conversely, adherence to regular treatment was positively correlated with higher TranQoL scores (P < 0.05).

Conclusion: The study demonstrates that HRQoL among Chinese patients with TDT is at a low level. Age, treatment adherence, family support, and socioeconomic status were identified as key determinants influencing HRQoL. It is essential to further enhance and optimize health insurance policies and medical services to support comprehensive treatment strategies for these patients.

Aims: The primary aim of this study was to characterize the health-related quality of life (HRQoL) and identify the associated factors among children aged 2 to 18 in China diagnosed with idiopathic nephrotic syndrome (INS). Additionally, the study aimed to evaluate the HRQoL and caregiving burden of their caregivers and investigate the correlation between the HRQoL of the children and that of their caregivers.

Methods: This study recruited 181 children diagnosed with INS from Children's Hospital, Zhejiang University School of Medicine in China. The proxy-reported PedsQL Generic Core Module (PedsQL™ 4.0 GCM) was used to measure the HRQoL of children, and the EuroQol five-dimensional questionnaire, five-level version (EQ-5D-5L) was applied to measure caregivers' HRQoL. Differences in scale scores and total scores of PedsQL™ 4.0 GCM were assessed using t-tests and one-way ANOVA. Multivariate linear regression analysis was used to identify the factors associated with children's HRQoL. Pearson correlation analysis evaluated the correlation between children's HRQoL and caregiver's HRQoL.

Results: HRQoL of Children with INS declines with increasing age, and children aged 5-18 had lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total PedsQL™ 4.0 GCM score compared to healthy children. Various factors, including the mother filling out the questionnaire, the father being unemployed, and the use of other medications except for steroids, were associated with worse HRQoL of children (p values < 0.05). Additionally, a correlation exists between children's HRQoL and their caregivers' HRQoL.

Conclusion: This study evaluated the HRQoL of children aged 2-18 years diagnosed with INS in China, along with the HRQoL of their caregivers. Multiple factors potentially influence the HRQoL of children. A significant correlation was observed between the HRQoL of children and their caregivers, who frequently experienced varying levels of caregiving burden. Therefore, it is recommended that healthcare professionals prioritize optimizing HRQoL for children with INS and their caregivers.

Background: Mental health encompasses more than just the absence of mental disorders. Thus, a Mental Health Surveillance (MHS) and reporting system for Germany should monitor mental well-being in addition to psychopathology to capture a more complete picture of population mental health. The Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) is an internationally established inventory for the integrated assessment of different aspects of mental well-being (i.e., hedonic and eudaimonic) in population samples that has not yet been validated for Germany.

Methods: Using data from a cross-sectional online survey of a convenience sample of N = 1.048 adults aged 18-79 years (51% female) living in Germany, the factorial structure, measurement invariance (age, sex) and psychometric properties of the WEMWBS in its long (14 items) and short (7 items) versions were analyzed. Additionally, correlations to relevant factors (e.g., health-related quality of life, psychological distress) were investigated as indicators of criterion validity.

Results: Means of model fit indices did not confirm a unidimensional factor structure for either version. The three-factor-correlative models showed moderate to good fit while the bifactor model with one general mental well-being factor and three grouping factors fitted the data best. The full range of possible responses was used for all items, and the distribution of both scales was approximately normal. Moreover, the results revealed measurement invariance across sex and age groups. Initial evidence of criterion validity was obtained. Internal consistencies were α = 0.95 and α = 0.89, respectively. Average mental well-being was comparable to that of other European countries at 3.74 for the long version and 3.84 for the short version. While there were no differences by sex, comparisons between age groups revealed higher mental well-being among the older age groups.

Conclusions: Both versions of the WEMWBS showed sound psychometric characteristics in the present German sample. The findings indicate that the instrument is suitable for measuring mental well-being at the population level due to its distributional properties. These results are promising, suggesting that the scale is suitable for use in a national MHS that aims to capture positive mental health in the population as a foundation for prevention and promotion efforts within public mental health.

Objective: As the ageing process in China further accelerates and the average life expectancy increases, chronic disease prevalence and multimorbidity rates are constantly rising, especially among elderly individuals. However, few previous studies have explored the impacts of chronic diseases and multimorbidity on health-related quality of life (HRQoL). This study aimed to investigate this association among community-dwelling elderly individuals in China.

Methods: A cross-sectional study was conducted in communities in three cities (Suzhou, Qingdao, and Guangzhou). The basic characteristics, chronic diseases and HRQoL of participants were collected, and HRQoL was measured by the EuroQol 5-Dimensions 3-Level version (EQ-5D-3L). Logistic regression, Tobit regression and generalized linear models were used to assess the impacts of chronic diseases and multimorbidity on HRQoL.

Results: Approximately 83.2 percent of the 1,218 respondents had chronic conditions, with 30 percent having multimorbidity. After controlling for sociodemographic and health behaviour factors, patients with stroke were more likely to report problems in all five dimensions of the EQ-5D and had a lower EQ-5D utility index (UI) (b = -0.342) than patients with other chronic conditions. Patients with chronic pulmonary obstruction had a lower EuroQol Visual Analog Scale (EQ-VAS) (b = -11.169) than patients with other chronic conditions. Furthermore, patients with multimorbidity had worse HRQoL (P < 0.001).

Conclusions: Both chronic condition probability and multimorbidity rates were high among Chinese community-dwelling elderly individuals. Different disease types had varying degrees of impact on HRQoL, and patients with multimorbidity had worse HRQoL. This study proposes that the government enhance the quality of life of community-dwelling elderly individuals with multimorbidity by establishing long-term care insurance and expanding comprehensive community-based home health care services.

Background: While general self-efficacy is known to relate to achievement in many areas, it has rarely been evaluated in individuals with low vision. Here we explore the psychometric properties and targeting of the New General Self Efficacy Scale (NGSES) using Rasch analysis in data collected from older adult clinical trial participants with low vision.

Methods: Participants (n = 121) completed pre-intervention telephone questionnaires (i.e., NGSES, Activity Inventory (AI), Beck Depression Inventory (BDI), SF-36, and the Telephone Interview for Cognitive Status (TICS). Rasch analysis using the Method of Successive Dichotomizations (MSD) was applied to NGSES, AI, and BDI datasets to estimate person and item measures, and ordered rating category thresholds. NGSES infit mean square statistics and standard errors were analyzed to test whether data fit Rasch model requirements, and targeting was assessed by comparing distributions of person and item measures. Multiple linear regression evaluated the influence of participant characteristics on NGSES person measures.

Results: There was a significant difference (p = 0.01) in the distributions of NGSES person measures (mean = 0.85, range -2.1-3.2) and item measures (mean = 0, range -1.0-0.72). Infit mean square statistics and standard errors for item and person measures conformed to expectations of the Rasch model. Greater NGSES person measure was related to lower BDI person measure (β = -0.48, p < 0.0005, 95% CI -0.67--0.28) and higher AI person measure (β = 0.11, p = 0.047, 95% CI 0.0013 - 0.22) after controlling for cognitive status (TICS). Other variables including SF-36, visual acuity, and patient demographics were not related to NGSES person measure.

Conclusions: While NGSES person measures estimated from a low vision patient population conformed to basic Rasch model requirements, the significant differences in the person and item measure distributions indicate poor NGSES targeting, specifically a ceiling effect. Therefore, there is limited discrimination between persons at the upper end of the scale. While further work can evaluate how self-efficacy may be associated with other factors in the low vision patient population, the ceiling effect found in this study cautions interpretation of NGSES results for those with high general self-efficacy.

Trial registration: Pre-registered on clinicaltrials.gov, identifier NCT04926974.

Background: Financial toxicity describes the impairment of financial wellbeing in patients due to the burden of cancer diagnosis and care. The COST: A Functional Assessment of Chronic Illness Therapy Measure of Financial Toxicity (FACIT-COST) is the most widely used cancer-specific measure of subjective financial toxicity, having been validated in multiple languages, but not in Indonesian. This study aimed to validate the Indonesian version of FACIT-COST in a breast cancer sample.

Methods: A single-center prospective cohort study was performed in Indonesia. Female breast cancer patients aged ≥ 18 undergoing treatment at baseline were invited to participate and followed for up to six months. The survey included the official Indonesian version of FACIT-COST (v2) which was administered to the patients by interviewers. Clinical information (e.g., metastasis status, disease duration) was provided based on medical records. The following measurement properties of FACIT-COST were tested: distributional characteristics, structural validity (principal component [PCA] and confirmatory factor analyses [CFA]), internal consistency reliability (Cronbach's alpha and McDonald's omega), known-groups validity (Mann-Whitney U or Kruskal-Wallis H test), test-retest reliability, and responsiveness to change.

Results: Overall, 300 female patients participated at baseline. No patients reported the best or worst possible FACIT-COST total scores. The PCA proposed a two-factor model structure for the instrument, which was confirmed by the CFA (RMSEA = 0.042, SRMR = 0.049, CFI = 0.99, TLI = 0.99). The internal consistency reliability of the two factors was considered adequate (Cronbach's alpha = 0.774-0.882, McDonald's omega = 0.786-0.888). The FACIT-COST total score significantly discriminated across the following known-groups: age, education, residential setting, income, employment, metastasis status, number of symptoms, and financial coping strategies. The FACIT-COST demonstrated excellent test-retest reliability (intraclass correlation coefficient = 0.96) and satisfactory responsiveness to change (standardized response mean and effect size ranges=|0.39| to |0.92|).

Conclusions: This is the first study to validate the FACIT-COST in patients with breast cancer and to present the measurement properties of the Indonesian version of FACIT-COST. The Indonesian FACIT-COST demonstrates acceptable psychometric performance and shows potential as a valid measure of subjective financial toxicity. The instrument may serve as a valuable tool for informing health policies that focus on providing resource support to improve cancer care in Indonesia.

Background: Chronic low back pain (CLBP), a significant cause of disability, is expected to increase with aging. Short Form 36 (SF-36) indicated higher baseline component scores predict CLBP disability at shorter follow-ups, with unexplored five-year associations. The study aimed to test the associations of the physical and mental subscales of the SF-36 at baseline with disability at the five-year follow-up point among patients with CLBP.

Methods: Patients aged between 20 and 65 years with CLBP were enrolled at baseline and followed at the five-year point. The Oswestry Disability Index (ODI), the physical functioning (PF) subscale of the SF-36, and self-reported total months of disability (TMOD) over the past five years were used as the indices of disability. The four physical and mental subscales of the SF-36 were used as independent factors, respectively. Multiple linear regression was used to compare the associations of the physical and mental subscales at baseline with disability at follow-up.

Results: Two hundred twenty-five patients with CLBP were enrolled at baseline and 111 participated in followed at the five-year point. Among the SF-36 subscales, the scores of bodily pain (BP), vitality (VT), and social functioning (SocF) at baseline were significantly correlated with the three indices of disability at follow-up. After controlling for demographic and clinical variables, BP and VT at baseline were most strongly associated with the ODI and TMOD at follow-up among the four physical and mental subscales, respectively. PF at baseline was most strongly associated with itself at follow-up among the four physical subscales.

Conclusion: Our results demonstrated that both the physical and mental subscales of the SF-36 at baseline could predict disability at the five-year follow-up point among patients with CLBP. The BP and VT subscales were independent factors associated with disability among the physical and mental subscales, respectively.

Background: The EORTC Quality of Life Group has developed a questionnaire to evaluate cancer patients' perception of their communication with healthcare professionals (HCPs): the EORTC QLQ-COMU26. In this study we test the validity and reliability of this novel measure in an international and culturally diverse sample of cancer patients.

Methods: Cancer patients completed the following EORTC questionnaires at two time points (before and during treatment): the QLQ-COMU26 (including a debriefing questionnaire), the QLQ-C30, and specific IN-PATSAT32 scales. These data were used to assess: the cross-cultural applicability, acceptability, scale structure, reliability, convergent/divergent validity, known-groups validity, and responsiveness to change of the QLQ-COMU26.

Results: Data were collected from 498 patients with various cancer diagnoses in 10 European countries, Japan, Jordan and India (overall 5 cultural regions). At most, only 3% of patients identified an item as confusing and 0.6% as upsetting, which indicates that the questionnaire was clear and did not trigger negative emotional responses. Confirmatory factor analysis and multi-trait scaling confirmed the hypothesised QLQ-COMU26 scale structure comprising six multi-item scales and four single items (RMSEA = 0.025). Reliability was good for all scales (internal consistency > 0.70; test-retest reliability > 0.85). Convergent validity was supported by correlations of ≥ 0.50 with related scales of the IN-PATSAT32 and correlations < 0.30 with unrelated QLQ-C30 scales. Known-groups validity was shown according to sex, education, levels of anxiety and depression, satisfaction with communication, disease stage and treatment intention, professional evaluated, and having a companion during the visit. The QLQ-COMU26 captured changes over time in groups that were defined based on changes in the item of satisfaction with communication.

Conclusion: The EORTC QLQ-COMU26 is a reliable and valid measure of patients' perceptions of their communication with HCPs. The EORTC QLQ-COMU26 can be used in daily clinical practice and research and in various cancer patient groups from different cultures. This questionnaire can help to improve communication between patients and healthcare professionals.

Background: We aimed to investigate the longitudinal impact of COVID-19 and the effects of clinical and psychosocial factors, accounting for post-COVID conditions (PCC), on the mental and physical aspect of health-related quality of life (HRQoL) of patients diagnosed with COVID-19.

Methods: Data from the Nivel Corona Cohort were used, which includes individuals with an established SARS-CoV-2 infection that received four questionnaires over a year's time with questions regarding HRQoL (SF-12), symptoms and social characteristics. PCC was determined based on questionnaire data. Data on medical history and healthcare utilization were obtained from electronic health records from general practice. A repeated measures linear mixed model was used to explore associations between clinical and social characteristics, and the course of mental and physical HRQoL after a SARS-CoV-2 infection, taking PCC into account.

Results: One hundred fifty-eight individuals of whom it was possible to determine whether they had PCC or not were included in this study. Seventy-six (48.1%) developed PCC, which was associated with a persistent reduction in both physical and mental HRQoL. Hospitalization during the acute phase of the infection had a negative impact on the physical HRQoL, which decreased over time. Females, people older than 53, and those with increased resilience and mental HRQoL before infection were more likely to report a more positive mental HRQoL over time.

Conclusion: The negative association PCC has with both mental and physical HRQoL for at least six months, calls for more research to support patients with PCC.