Health-related Quality Of Life Measures Research Articles

A psychometric investigation of health-related quality of life measures for paediatric neurodevelopment assessment: Reliability and concurrent validity of the PEDS-QL, CHU-9D, and the EQ-5D-Y.

There is a need for tools that can provide a brief assessment of functioning for children with neurodevelopmental conditions, including health-related quality of life (HR-QoL). This study evaluated the psychometric properties of three commonly used and well known HR-QoL measures in a cohort of children presenting to clinical developmental assessment services. The most common diagnoses received in these assessment services were autism spectrum disorders. Findings showed good internal consistency for the PedsQL and the CHU-9D, but not the EQ-5D-Y. This research also found that the CHU-9D, EQ-5D-Y, and PedsQL correlated with relevant functioning domains assessed by the VABS-III. Overall, the measures showed that children with neurodevelopmental conditions experienced poor HR-QoL. The majority of children (>86%) met cut-off criteria for significant health concerns on the PedsQL. On the EQ-5D-Y and CHU-9D, they showed reduced HR-QoL particularly on domains relating to school and homework, being able to join in activities, looking after self, and doing usual activities. This study supports the use of the CHU-9D and PedsQL in this population to assess and potentially track HR-QoL in a broad neurodevelopment paediatric population.

Quality of Life in Patients With Chronic Limb-Threatening Ischemia Treated With Revascularization.

In the BEST-CLI trial (Best Endovascular Versus Best Surgical Therapy for Patients With Chronic Limb-Threatening Ischemia), a prespecified secondary objective was to assess the effects of revascularization strategy on health-related quality of life (HRQoL). Patients with chronic limb-threatening ischemia were randomized to surgical bypass (Bypass) or endovascular intervention (Endo) in 2 parallel trials. Cohort 1 included patients with single-segment great saphenous vein; cohort 2 included those lacking suitable single-segment great saphenous vein. HRQoL was assessed over the trial duration using Vascular Quality-of-Life (VascuQoL), European Quality-of-Life-5D (EQ-5D), the Short Form-12 (SF-12) Physical Component Summary (SF-12 PCS), SF-12 Mental Component Summary (SF-12 MCS), Utility Index Score (SF-6D R2), and numeric rating scales of pain. HRQoL was summarized by cohort and compared within and between groups using mixed-model linear regression. A total of 1193 and 335 patients in cohorts 1 and 2 with a mean follow-up of 2.9 and 2.0 years, respectively, were analyzed. In cohort 1, HRQoL significantly improved from baseline to follow-up for both groups across all measures. For example, mean (SD) VascuQoL scores were 3.0 (1.3) and 3.0 (1.2) for Bypass and Endo at baseline and 4.7 (1.4) and 4.8 (1.5) over follow-up. There were significant group differences favoring Endo when assessed with VascuQoL (difference, -0.14 [95% CI, -0.25 to -0.02]; P=0.02), SF-12 MCS (difference, -1.03 [95% CI, -1.89 to -0.18]; P=0.02), SF-6D R2 (difference, -0.01 [95% CI, -0.02 to -0.001]; P=0.03), numeric rating scale pain at present (difference, 0.26 [95% CI, 0.03 to 0.49]; P=0.03), usual level during previous week (difference, 0.26 [95% CI, 0.04 to 0.48]; P=0.02), and worst level during previous week (difference, 0.29 [95% CI, 0.02 to 0.56]; P=0.04). There was no difference between treatment arms on the basis of EQ-5D (difference, -0.01 [95% CI, -0.03 to 0.004]; P=0.12) or SF-12 PCS (difference, -0.41 [95% CI, -1.2 to 0.37]; P=0.31). In cohort 2, HRQoL also significantly improved from baseline to the end of follow-up for both groups based on all measures, but there were no differences between Bypass and Endo on any measure. Among patients with chronic limb-threatening ischemia deemed eligible for either Bypass or Endo, revascularization resulted in significant and clinically meaningful improvements in HRQoL. In patients with an available single-segment great saphenous vein for bypass, but not among those without one, Endo was statistically superior on some HRQoL measures; however, these differences were below the threshold of clinically meaningful difference.

Exploratory and confirmatory factor analysis of emPHasis-10: The health-related quality-of-life measure in pulmonary hypertension.

The emPHasis-10 is a health-related quality of life (HRQoL) unidimensional measure developed specifically for adults with pulmonary hypertension. The tool has excellent psychometric properties and is well used in research and clinical settings. Its factor structure has not been examined, which may help to identity a complimentary approach to using the measure to examine patient functioning. We performed an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) on a data set collected from 263 adults with PH recruited from a community setting. The EFA suggested the emPHasis-10 consists of three underlying latent variables, which based on the loading of items, were termed "fatigue" (Items 3, 4, and 5), "independence" (Items 7, 8, 9, and 10), and "breathlessness" (Items 1, 2, and 6). All factors were found to have good internal consistency. "Independence" accounted for most of the variance (29%), followed by "breathlessness" (22%) and "fatigue" (19%). The CFA looked to confirm the fit of a three-factor model. A higher-order model was found to be the best fit consisting of HRQoL as a superordinate factor, for which the association between this factor and the 10 items was mediated through the three latent factors. Further analyses were performed testing the validity of the latent variables revealing all were significantly correlated with self-reported measures of depression, anxiety, health-anxiety, and dyspnea. Our analyses support the emPHasis-10 as a measure of HRQoL, while also proposing the clinical utility of examining the three emergent factors, which could be used to glean additional insight into the respondent's functioning and inform care.

Defining Trajectories of Linguistic, Cognitive-Communicative, and Quality of Life Outcomes in Aphasia: Longitudinal Observational Study Protocol

ObjectiveTo describe the trajectories of linguistic, cognitive-communicative, and health-related quality of life (HRQOL) outcomes after stroke in persons with aphasia. DesignLongitudinal observational study from inpatient rehabilitation to 18 months after stroke. SettingFour US mid-west inpatient rehabilitation facilities (IRFs). ParticipantsWe plan to recruit 400 adult (older than 21 years) English speakers who meet the following inclusion criteria: (1) Diagnosis of aphasia after a left-hemisphere infarct confirmed by CT scan or magnetic resonance imaging (MRI); (2) first admission for inpatient rehabilitation due to a neurologic event; and (3) sufficient cognitive capacity to provide informed consent and participate in testing. Exclusion criteria include any neurologic condition other than stroke that could affect language, cognition or speech, such as Parkinson's disease, Alzheimer's disease, traumatic brain injury, or the presence of right-hemisphere lesions. InterventionsNot applicable. Main Outcome MeasuresSubjects are administered a test battery of linguistic, cognitive-communicative, and HRQOL measures. Linguistic measures include the Western Aphasia Battery-Revised and the Apraxia of Speech Rating Scale. Cognitive-communicative measures include the Communication Participation Item Bank, Connor's Continuous Performance Test-3, the Communication Confidence Rating Scale for Aphasia, the Communication Effectiveness Index, the Neurological Quality of Life measurement system (Neuro-QoL) Communication short form, and the Neuro-QoL Cognitive Function short form. HRQOL measures include the 39-item Stroke & Aphasia Quality of Life Scale, Neuro-QoL Fatigue, Sleep Disturbance, Depression, Ability to Participate in Social Roles & Activities, and Satisfaction with Social Roles & Activities tests, and the Patient-Reported Outcome Measurement and Information System 10-item Global Health short form. The test battery is administered initially during inpatient rehabilitation, and at 3-, 6-, 12-, and 18-months post-IRF discharge. Biomarker samples are collected via saliva samples at admission and a subgroup of participants also undergo resting state fMRI scans. ResultsNot applicable. ConclusionsThis longitudinal observational study will develop trajectory models for recovery of clinically relevant linguistic, cognitive-communicative, and quality of life outcomes over 18 months after inpatient rehabilitation. Models will identify individual differences in the patterns of recovery based on variations in personal, genetic, imaging, and therapy characteristics. The resulting models will provide an unparalleled representation of recovery from aphasia resulting from stroke. This improved understanding of recovery will enable clinicians to better tailor and plan rehabilitation therapies to individual patient's needs.

Construct validity of EQ-5D-5L among patients with inflammatory bowel disease—a study based on real-world data from the Swedish Inflammatory Bowel Disease Registry

ObjectivesThe Swedish Inflammatory Bowel Disease Registry (SWIBREG) includes approximately 84% of all patients with inflammatory bowel disease (IBD) treated with immunomodulators, biologics or surgery in Sweden. Data on health-related quality of life (HRQoL) have been collected using EQ-5D-5L in the registry since 2012. Nevertheless, there are few studies assessing the validity of EQ-5D-5L in this patient population. Thus, the aim of this study was to assess the construct validity of EQ-5D-5L amongst patients with IBD (ulcerative colitis and Crohn’s disease).MethodsIndividual-level data on EQ-5D-5L and other disease-specific measures were extracted from SWIBREG. Known-groups validity was assessed by analysing whether the EQ-5D-5L captured expected differences between patient groups with different activity levels of the disease. Convergent validity was assessed by analysing whether the reported problems in the dimensions of EQ-5D-5L, EQ VAS, and the EQ-5D-5L index value correlated, as hypothesized, with the four dimensions in the Short Health Scale, a symptom index question, and the Physician Global Assessment (PGA) score.ResultsIn total, 9769 patients with IBD were included in the study. Patients with active IBD reported more health problems in the EQ-5D-5L descriptive system than patients being in remission. The effect sizes for the differences in reported problems between patients with active and inactive disease were at least small (≥0.1) or medium (≥0.3) in all dimensions except self-care. Differences in the mean EQ-5D-5L index and EQ-VAS score between patients with active and inactive disease were statistically significant (p < 0.001) and larger than pre-defined cut-offs for minimally important differences (>0.08 for the index and >11.0 for EQ-VAS). The analysis of convergent validity showed that EQ-5D-5L results correlated as expected with the disease-specific measures in 16 of the 21 analyses. In total, 22 (79%) of the 28 hypotheses were supported.ConclusionThe findings support the construct validity of EQ-5D-5L amongst patients with IBD and contribute to the scarce literature on the validity of the five-level version of EQ-5D in this patient population. These findings have important implications for the choice of HRQoL measure in routine health care registries like SWIBREG as well as for future clinical or health economic studies considering using EQ-5D-5L as a measure of HRQoL.

Methods for Including Adverse Events in Economic Evaluations: Suggestions for Improvement

ObjectiveInclusion of relevant effectiveness and safety outcomes in economic evaluation of health technologies is required to aid efficient healthcare decisions. Our objective was to identify the key issues related to the inclusion of adverse events (AEs) in economic evaluation and explore perspectives for good practice recommendations to handle these issues. MethodsWe focused on the frequently encountered methodological issues related to the integration of AEs in economic evaluations of health technologies. We distinguished the following elements: the incorporation of AEs in decision models, the terminology of AEs, the estimation of AEs consequences in terms of quality of life (QoL) and costs, and the exploration of the uncertainty related to the impact of AEs on the economic results. ResultsWe illustrated and discussed each of the identified issues by giving health technology assessment examples. We focused on the extent to which the integration of AEs in decision models can be improved by dealing with the lack of relevant real-world safety data, estimating the consequences of AEs (eg, for costs and QoL loss), exploring the impacts of AEs that are not adequately captured in current measurement of health-related QoL, and identifying the need for development of a good terminology of relevant types of AEs to be incorporated in economic evaluation. ConclusionBased on a reflection the key methodological issues related to the incorporation of adverse drug events in economic evaluations, we suggested several recommendations to serve a starting point for health technology assessment agencies and researchers to develop good research practices in this field.

Relative importance of selected predictors of health-related quality-of-life (HRQOL) among U.S. adults.

Many factors have been associated with health-related quality of life (HRQOL), and researchers often have tried to rank these contributing factors. Variable importance quantifies the net independentcontribution of each individual predictor in a set of predictors to the prediction accuracy of the outcome. This study assessed relative importance (RI) of selected contributing factors to respondents' physically unhealthy days (PUD), mentally unhealthy days (MUD), activity limitation days (ALD), and EuroQol EQ-5D index derived from the Healthy Days measures (dEQ-5D). Using data from the 2021 Behavioral Risk Factor Surveillance Systems (BRFSS), we estimated the RI of seven socio-demographics and seventeen chronic conditions and risk behaviors. Avariable's importance was measured asthe average increase in the coefficient of determination after adding the variable to all possible sub-models. After controlling for socio-demographics, arthritis and no physical activity were the most important variables for PUD with a RI of 10.5 and 10.4, respectively, followed by depression (RI = 8.5) and COPD (RI = 8.3). Depression was the most important variable for MUD with RI = 23.0 while all other 16 predictors had a RI < 7.0. Similar results were observed for ALD and dEQ-5D: depression was the most important predictor (RI = 16.3 and 15.2, respectively), followed by no physical activity, arthritis, and COPD (RI ranging from 7.1 to 9.2). This study quantified and ranked selected contributing factors of HRQOL. Results of this analysis also can be used to validate HRQOL measures based on domain knowledge of HRQOL.

Assessing the diversity and determinants of health-related quality of life measures in patients with acute heart failure.

Heart failure with reduced ejection fraction (HFrEF) significantly impacts health-related quality of life (HR-QoL). Existing HR-QoL questionnaires can show inconsistencies, potentially misrepresenting patient self-reports. This study examines the variation in HR-QoL measurement tools for HFrEF patients, identifying related determinants. We retrospectively analysed 134 hospitalized patients with acute decompensated HFrEF at a Taiwanese tertiary centre's Heart Failure Post-Acute-Care (HF-PAC) programme. Participants completed the EuroQol-5 dimension (EQ-5D) questionnaire, the EQ-5D visual analogue scale (VAS), and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). Utility values were obtained from the EQ-5D questionnaire. Demographic features were depicted using descriptive statistics, while multivariate regression was used to ascertain relationships between HR-QoL measurements and determinants. Average scores for EQ-5D, MLHFQ, EQ-5D utility, and VAS were 6.1±1.6, 21.8±21.3, 81.7±27.0, and 59.5±14.6, respectively. Significant correlations were observed among the three tools. The New York Heart Association functional class showed a notable association with all tool scores. Other associations encompassed EQ-5D with coronary artery disease, mineralocorticoid receptor antagonists, and the 6min walk test; EQ-5D VAS with chronic kidney disease; and MLHFQ with age. This study illuminates the variance in HR-QoL measurement tools for Taiwanese HFrEF patients. Using a range of these tools is beneficial in unveiling diverse determinants and approaching comprehensive patient-centred care. However, for a more precise HR-QoL assessment in Taiwanese HFrEF patients, recalibrating the EQ-5D-derived utility scores might be necessary, emphasizing the importance of patient-specific considerations within the HF-PAC programme.

Examining Associations Between Baseline Health-Related Quality of Life and Depression and Physical Functioning Improvement Following Pulmonary Rehabilitation.

This study examined whether health-related quality of life (HRQL) and depression assessed prior to pulmonary rehabilitation (PR) participation (ie, at baseline) predicted change in 6-min walk distance (6MWD) from baseline to end of PR. Patients with pulmonary disease were consecutively referred/enrolled in a PR program from 2009-2022 (N = 503). Baseline 6MWD was assessed along with self-report measures of HRQL (St George's Respiratory Questionnaire [SGRQ]) and depression (Geriatric Depression Scale [GDS]). The SGRQ total score was used to assess overall HRQL, and SGRQ subscales assessed pulmonary symptoms, activity limitations, and psychosocial impacts of pulmonary disease. Multiple linear regression was used to examine whether baseline SGRQ scores and depression predicted Δ6MWD. Baseline SGRQ total score ( F(1,389) = 8.4, P = .004) and activity limitations ( F(1,388) = 4.8, P = .03) predicted Δ6MWD. Patients with an SGRQ activity limitation score ≤ 25th percentile showed the most 6MWD improvement (mean = 79.7 m, SE = 6.7), and significantly more improvement than participants scoring between the 50-75th percentiles (mean = 54.4 m, SE = 6.0) or >75th percentile (mean = 48.7 m, SE = 7.5). Patients scoring between the 25-50th percentiles (mean = 70.2 m, SE = 6.1) did not differ significantly from other groups. The SGRQ symptoms and impacts subscales were unrelated to Δ6MWD ( F(1,388) = 1.2-1.9, P > .05), as was depression ( F(1,311) = 0.0, P >.85). Patients with greater HRQL at baseline may experience greater physical functioning improvement following PR. Additional support for patients with lower HRQL (eg, adjunctive self-management interventions) may enhance PR outcomes, particularly for patients who report greater activity limitations. Alternatively, early referral to PR (ie, when less symptomatic) may also benefit physical function outcomes.

Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions.

Measuring health-related quality of life (HRQoL) of children with suspected genetic conditions is important for understanding the effect of interventions such as genomic sequencing (GS). The Pediatric Quality of Life Inventory (PedsQL) is a widely used generic measure of HRQoL in pediatric patients, but its psychometric properties have not yet been evaluated in children undergoing diagnostic GS. In this cross-sectional study, we surveyed caregivers at the time of their child's enrollment into GS research studies as part of the Clinical Sequencing Evidence Generating Research (CSER)consortium. To evaluate structural validity of the PedsQL 4.0 Generic Core Scales and PedsQL Infant Scales parent proxy-report versions, we performed a confirmatory factor analysis of the hypothesized factor structure. To evaluate convergent validity, we examined correlations between caregivers' reports of their child's health, assessed using the EQ VAS, and PedsQL scores by child age. We conducted linear regression analyses to examine whether age moderated the association between caregiver-reported child health and PedsQL scores. We assessed reliability using Cronbach's alpha. We analyzed data for 766 patients across all PedsQL age group versions (1-12months through 13-18years). Model fit failed to meet criteria for good fit, even after modification. Neither age group (categorical) nor age (continuous) significantly moderated associations between PedsQL scores and caregiver-reported child health. Cronbach's alphas indicated satisfactory internal consistency for most PedsQL scales. The PedsQL Generic Core Scales and Infant Scales may be appropriate to measure HRQoL in pediatric patients with suspected genetic conditions across a wide age range. While we found evidence of acceptable internal consistency and preliminary convergent validity in this sample, there were some potential problems with structural validity and reliability that require further attention.

Use of the Patient Generated Index to Identify Physical Health Challenges among People Living with HIV: A Cross-sectional Study

Many people living with HIV experience physical health challenges including mobility problems, pain, and fatigue. Purpose: To estimate how many people living with HIV identify physical health challenges as important using the patient generated index (PGI). Secondary Objectives: a. Identify factors associated with reporting physical health challenges; b. Identify relationships between reporting physical health challenges and standardized health-related quality of life (HRQOL) items; and c. Estimate the extent to which reporting a physical health challenge explains downstream HRQOL outcomes. Methods: Cross-sectional data came from a large Canadian cohort. We administered the PGI and three standardized HRQOL measures. PGI text threads were coded according to the World Health Organization's International Classification of Functioning, Disability, and Health. Regression, discriminant analysis, and chi-square tests were used. Results: Of 865 participants, 248 [28.7%; 95% CI (25.7%, 31.8%)] reported a physical health challenge on the PGI. Participants with better pain (OR: 0.81, 95% CI: 0.71, 0.90) and vitality (OR: 0.71, 95%CI: 0.63, 0.80) by 20 points had lower odds of reporting a physical health challenge. Those who reported a physical health challenge had significantly lower HRQOL on some standardized items. Conclusion: The PGI is well-suited to identify the physical challenges of people living with HIV.

Health-related quality of life measures provide information on the contributors, components, and consequences of frailty in HIV: a systematic mapping review.

Frailty in HIV is extensively explored in epidemiological and clinical studies; it is infrequently assessed as an outcome in routine care. The focus on health-related quality of life (HRQL) measures in HIV presents a unique opportunity to understand frailty at a larger scale. The objective was to identify the extent to which generic and HIV-related HRQL measures capture information relevant to frailty. A systematic mapping review using directed and summative content analyseswas conducted. An online search in PubMed/Medline identified publications on frailty indices and generic and HIV-related HRQL measures. Directed content analysis involved identifying contributors, components, and consequences of frailty from thefrailty indices based on the International Classification of Functioning, Disability, and Health framework. Summative content analysis summarized the resultsnumerically. Electronic and hand search identified 447 review publications for frailty indices; nine reviews that included a total of 135 unique frailty indices. The search for generic and HIV-related HRQL measures identified 2008 records; five reviews that identified 35 HRQL measures (HIV-specific: 17; generic: 18). Of the 135 frailty indices, 88 cover more than one frailty dimension and 47 cover only physical frailty. Contributors to frailty, like sensory symptoms and nutrition, are extensively covered. Components of frailty such as physical capacity, cognitive ability, and mood are also extensively covered. Consequences of frailty namely self-rated health, falls, hospitalization, and health services utilization are incomprehensively covered. HRQL measures are informative for contributing factors, components of frailty, and a consequence of frailty. HRQL items and measures show a strong potential to operationalize multidimensional frailty and physical frailty. The study suggests that these measures, connected to evidence-based interventions, could be pivotal in directing resources toward vulnerable populations to mitigate the onset of frailty.

Predictors of Psychological Well-Being and Quality of Life in Patients with Hypertension: A Longitudinal Study.

Previous research has highlighted the positive impact of greater health-related quality of life (Hr-QoL) and subjective well-being (SWB) on chronic diseases' severity and progression. There is a paucity of studies investigating the long-term trajectories of these variables among hypertensive patients. The present study aims to investigate the relationships between psychological variables (Type A and D personality, locus of control-LoC, self-esteem, and trait anxiety) with SWB and Hr-QoL in patients with hypertension and comorbid metabolic syndrome. A total of 185 volunteer patients (130 males, 70.3%; mean age 54 ± 10.93) were enrolled. Patients filled out measures of Hr-QoL and SWB, LoC, and self-esteem at three time points-Type A and D behaviors and anxiety measures only at baseline. Analyses were run through two-level hierarchical mixed models with repeated measures (Level 1) nested within participants (Level 2), controlling for sociodemographic and clinical confounders. Neither Hr-QoL nor SWB changed over time. Patients with greater self-esteem and internal LoC (and lower external LoC) increased their SWB and Hr-QoL up to 1-year follow-up. A greater Type A behavior and trait anxiety at baseline predicted a longitudinal increase in most of the dependent variables. Results suggest that it could be useful to tailor interventions targeting specific variables to increase Hr-QoL and SWB among hypertensive patients.

Cross-sectional, comparative study of health-related quality of life across the adult lifespan in multiple sclerosis

Purpose This study examines the independent and interactive effects of age and multiple sclerosis (MS) on health-related quality of life (HRQOL). Materials and methods The sample included persons with MS (n = 207) and healthy controls (HCs; n = 99) divided into three age groups (young, middle-aged, and older adults) who completed a battery of questionnaires, including the 36-item Short-Form Health Survey (SF-36) as a measure of HRQOL. The SF-36 yielded scores for the Physical Component Summary (PCS) (i.e. physical HRQOL) and Mental Component Summary (MCS) (i.e. mental HRQOL). The data were analyzed using two-way MANOVA. Results There was no interaction between age and disease status on HRQOL, but there were significant main effects of age and disease status on HRQOL. HRQOL was significantly lower in participants with MS than HCs, regardless of age. Physical HRQOL was lower, whereas mental HRQOL was higher across age groups. Conclusion The findings suggest that future research should develop behavioral and rehabilitation approaches that are applicable for improving HRQOL across the lifespan in persons with MS, particularly for physical HRQOL in older adults with MS.

Health-related quality of life measures in patients undergoing decompressive craniectomy for severe traumatic brain injury: a 6-year follow-up analysis

Purpose We aimed to assess the long-term neurological outcomes and the functionality and QoL in patients undergoing decompressive craniectomy for severe traumatic brain injury, respectively. Materials and methods Among the 120 patients who underwent decompressive craniectomy for severe TBI between 2002 and 2007, 101 were included based on the inclusion criteria. Long-term follow-up results (minimum 3 years) were available for 22 patients. The outcomes were assessed using the Glasgow Outcome Scale (GOS) and the functionality and HRQoL were assessed using the Short Form-36 (SF-36) (v2) and Quality of Life After Brain Injury (QoLIBRI) questionnaires. Results Among the patients with severe TBI, 62 (61.4%) died and 39 (38.6%) were discharged to either home or a physical therapy facility. Eleven of the thirty-nine patients could not be reached and were excluded from the final analysis. The mean GOS of the remaining 28 patients was 4.14 ± 0.8 after 6.46 ± 1.64 years of follow-up. The HRQoL was assessed in 22 of the 28 patients. The HRQoL scores were lower in patients with TBI than in healthy controls. Furthermore, there was a significant difference in the HRQoL scores in patients with improved GOS scores than in those with unimproved GOS scores. Conclusions Health-related outcome scores could help clinicians understand the requirements of survivors of severe TBI to create a realistic rehabilitation target for them. QoLIBRI served as a good way of communication in these subjects.

Health-related quality of life and DNA methylation-based aging biomarkers among survivors of childhood cancer.

Childhood cancer survivors are at high risk for morbidity and mortality and poor patient-reported outcomes, typically health-related quality of life (HRQOL). However, associations between DNA methylation-based aging biomarkers and HRQOL have not been evaluated. DNA methylation was generated with Infinium EPIC BeadChip on blood-derived DNA (median for age at blood draw = 34.5 years, range = 18.5-66.6 years), and HRQOL was assessed with age at survey (mean = 32.3 years, range = 18.4-64.5 years) from 2206 survivors in the St Jude Lifetime Cohort. DNA methylation-based aging biomarkers, including epigenetic age using multiple clocks (eg, GrimAge) and others (eg, DNAmB2M: beta-2-microglobulin; DNAmADM: adrenomedullin), were derived from the DNAm Age Calculator (https://dnamage.genetics.ucla.edu). HRQOL was assessed using the Medical Outcomes Study 36-Item Short-Form Health Survey to capture 8 domains and physical and mental component summaries. General linear models evaluated associations between HRQOL and epigenetic age acceleration (EAA; eg, EAA_GrimAge) or other age-adjusted DNA methylation-based biomarkers (eg, ageadj_DNAmB2M) after adjusting for age at blood draw, sex, cancer treatments, and DNA methylation-based surrogate for smoking pack-years. All P values were 2-sided. Worse HRQOL was associated with greater EAA_GrimAge (physical component summaries: β = -0.18 years, 95% confidence interval [CI] = -0.251 to -0.11 years; P = 1.85 × 10-5; and 4 individual HRQOL domains), followed by ageadj_DNAmB2M (physical component summaries: β = -0.08 years, 95% CI = -0.124 to -0.037 years; P = .003; and 3 individual HRQOL domains) and ageadj_DNAmADM (physical component summaries: β = -0.082 years, 95% CI = -0.125 to -0.039 years; P = .002; and 2 HRQOL domains). EAA_Hannum (Hannum clock) was not associated with any HRQOL. Overall and domain-specific measures of HRQOL are associated with DNA methylation measures of biological aging. Future longitudinal studies should test biological aging as a potential mechanism underlying the association between poor HRQOL and increased risk of clinically assessed adverse health outcomes.

Frailty, Seasonal Sensitivity and Health-related Quality of Life in Older People Living in High Southern Latitudes: a Bayesian Analysis.

In older people, a notable research gap exists regarding the intricate dynamics between frailty, seasonal sensitivity, and health-related quality of life (HRQoL). This study aimed to determine the association between frailty, seasonal sensitivity, and HRQoL in older people from high southern latitudes. A cross-sectional observational study was conducted. Frailty, seasonal sensitivity, and HRQoL measurements were self-reported by participants through questionnaires. A total of 118 older people were recruited from a local community. The participants were selected through intentional non-probabilistic sampling. The adjusted models showed a trend where lower education was associated with a higher risk of frailty (BF = 0.218). For frailty and HRQoL, we observed a trend suggesting that HRQoL decreases with increasing severity of frailty (BF = 1.76). In addition, we observed a linear effect based on the severity of seasonal sensitivity, meaning that older people with higher perceived severity report a proportional decrease in HRQoL (BF = 6.66). Sociodemographic factors, such as lower education levels, have increased the risk of frailty. At the same time, frailty and seasonal sensitivity perceived severity were associated with a lower HRQoL in older people.

Relationships between disease severity, psychological stress, and health-related quality of life among patients with acute coronary syndrome: mediation of illness perception.

Patients with acute coronary syndrome (ACS) often experience reduced health-related quality of life (HRQOL), which may be attributable to the disease severity and psychological stress. While illness perception is speculated to be a potential pathway underlying these relationships, evidence supporting this mechanism remains limited. This study aimed to investigate the relationships between disease severity, psychological stress, and HRQOL and whether these relationships are mediated by illness perception in patients with ACS. Data were collected from June to July 2019 and June to September 2020 in the cardiology departments of four public hospitals in China. Eligible patients completed measures of disease severity, psychological stress, illness perception, HRQOL, and socio-demographic and clinical characteristics. Data were analysed employing hierarchical multiple regression and structural equation modelling. This study included 405 participants (mean age 60.63 years, 67.4% male). After controlling for socio-demographic and clinical covariates, higher levels of disease severity (β = 0.115, P = 0.024) and psychological stress (β = -0.209, P＜0.001) were associated with poorer HRQOL; however, the relationships became non-significant after adding illness perception into the regression model. Structural equation modelling analysis suggested that illness perception played a mediating role between disease severity, psychological stress, and HRQOL, accounting for 45.95% and 65.79% of the total effects, respectively. This study found that illness perception mediated the relationships between disease severity, psychological stress, and HRQOL among patients with ACS. Improving patients' HRQOL should consider its important influencing factors with a focus on promoting positive illness perception.

Clinical outcomes measurement in pediatric lower limb prosthetics: A scoping review.

This study aimed to identify clinical measures that have been used to evaluate function, health related quality of life (HRQoL), and/or satisfaction in children who use lower limb prostheses (LLP). The data reported on psychometric properties for children who use LLP were collected for each measure. First, PubMed, CINAHL, and Web of Science databases were searched using broad search terms to identify standardized outcome measures of function, HRQoL, and/or satisfaction with treatment used in pediatric LLP research published in 2001 or after. For each of the eligible measures found, a second search was performed to identify psychometric properties (e.g., validity, reliability) assessed with children who use LLP. Forty-four standardized outcome measures were identified from 41 pediatric LLP research articles. Five measures (i.e., Gait Outcomes Assessment for Lower Limb Differences, Functional Mobility Assessment, Child Amputee Prosthetics Project- Prosthesis Satisfaction Inventory, Child Amputee Prosthetics Project- Functional Scale Index, and Lower Limb Function Questionnaire) had data on psychometric properties for children who use LLP. Few studies report psychometric data for assessing the overall HRQoL, function, and/or satisfaction for children who use LLP. Further research is needed to validate or create new outcome measures that assess the HRQoL, satisfaction, and/or function of children who use LLP.

Child and family health-related quality of life and participation outcomes and goals after acquired brain injury: a cross-sectional survey

ABSTRACT Objective To explore longer-term health-related quality of life (HRQoL) and participation outcomes and goals of children and young people (CYP) with acquired brain injuries (ABI) and their families in a region of the UK and the impact of the COVID-19 pandemic. Methods Cross-sectional survey of (5-18 CYP) and their parent-carers 12–43 months following ABI. Included measures of HRQoL, participation, family function and parental wellbeing and demographic and free text questions. Results Ninety-five responses (30% response) were received. 67% of CYP were at risk of impaired HRQoL, 72% had severely impaired participation. 53% of parent-carers reported reduced HRQoL and family functioning, 37% of parent-carers screened positive for anxiety/depression. Relationships exist between CYP participation and HRQoL and parental HRQoL and family functioning. Goals were overwhelmingly activity and participation focused. Participants described the global impact of an ABI on the CYP and family as well as the additional impact of the COVID-19 pandemic on CYP and family wellbeing. Conclusion ABI significantly impacts CYP participation and both CYP and parent-carer wellbeing in the long-term, potentially further impacted by the COVID-19 pandemic. Rehabilitation interventions should address both participation and the psychological wellbeing of CYP with ABI and their parent-carers.