Health-related Quality Of Life Domains Research Articles

Predictors of damage accrual and its impact on health-related quality of life of thrombotic antiphospholipid syndrome: Independent validation of the damage index for antiphospholipid syndrome (DIAPS).

We aim to independently assess the validity of the damage index for antiphospholipid syndrome (DIAPS) in thrombotic antiphospholipid syndrome (APS) patients by exploring the prevalence and risk factors of organ damage and evaluating its impact on health-related quality of life (HR-QoL). Cross-sectional study including all thrombotic APS patients (Sydney criteria) attending a Portuguese tertiary centre. Damage was assessed using the DIAPS, and HR-QoL using the 3- and 5-level EuroQol HR-QoL (EQ-D5-3L and 5L), and Visual Analogue Scale (VAS) applied via a phone questionnaire. Spearman's correlation between DIAPS and the HR-QoL scales was performed. Risk factors for damage accrual and HR-QoL impairment were explored using univariate and multivariate logistic regression. Among the 108 patients (female, 65.7%; white, 90.7%; primary APS, 75.9%; median disease duration, 6years), damage (DIAPS≥1) developed in 48.2% of patients (mean ± SD DIAPS, 3.08 ± 1.83). DIAPS's neuropsychiatric domain was the most affected (24.2%), followed by the peripheral vascular domain (20.3%). No clinical, demographic nor laboratory parameters were significantly associated with damage. Regarding HR-QoL, pain/discomfort, anxiety/depression and usual activities domains were the most frequently impaired in both scales. DIAPS's domains correlated similarly with the EQ-5D-3L and 5L scales' individual domains. Female sex, medical disorders, secondary APS and type of presenting thrombosis (arterial) increased the risk of HR-QoL impairment. Total DIAPS was associated with higher odds of mobility, self-care and pain/discomfort impairment in both EQ-5D-3L and 5L scales but lost its independent risk in multivariable analysis. This external validation of DIAPS reinforces the ability of the score to correlate with HR-QoL while also highlighting risk factors for HR-QoL impairment other than damage accrual.

Long-Term Health-Related Quality of Life following Acute Type A Aortic Dissection with a Focus on Male–Female Differences: A Cross Sectional Study

Objectives: Acute type A aortic dissection (ATAAD) is a life-threatening cardiovascular emergency, of which the long-term impact on health-related quality of life (HRQoL) and male–female-specific insights remain inadequately clarified. Methods: Consecutive adult ATAAD patients who underwent surgery were retrospectively included between 2007 and 2017 in four referral centers in the Netherlands, and baseline data were collected. The 36-Item Short-Form (SF-36) Health Survey was sent to all survivors between 2019 and 2021 and compared to validated SF-36 scores of the Dutch general population stratified by age group and sex. Results: In total, 324/555 surviving patients returned the SF-36 questionnaire (response rate 58%), of which 40.0% were female; the median follow-up was 6.5 years (range: 1.7–13.9, IQR: 4.0–9.4) after surgery for ATAAD. In comparison to the general population, ATAAD patients scored significantly lower on 6/8 SF-36 subdomains and higher on bodily pain. Differences in HRQoL domains compared to the sex-matched data were largely comparable between sexes, apart from bodily pain. In the age-matched subgroups impaired HRQoL was most pronounced in younger patients aged 41–60 (5/8 impaired domains). Female ATAAD patients scored significantly worse on 5/8 SF-36 subdomains and the physical component summary (PCS) scores than male patients. Age at ATAAD, female sex, hypertension, COPD, and prior thoracic aortic aneurysm were associated with worse PCS scores. Conclusions: Long-term HRQoL was impaired in both male and female ATAAD patients when compared to the general population. Further studies on the nature of this impairment and on interventions to improve HRQoL after ATAAD are clearly warranted, with special attention to females and younger patients.

Effects of Pilates exercises on health-related quality of life in postmenopausal women: a systematic review and meta-analysis.

To verify the effects of Pilates exercises on health-related quality of life (HRQoL) in postmenopausal women. A systematic search was conducted in the following databases: PubMed, Embase, CENTRAL, CINAHL, Web of Science, LILACS, SportDiscus, Scielo, and PEDro. Randomized clinical trials (RCTs) that intervened with Pilates and had HRQoL as an outcome were eligible. The methodological quality of each RCT was assessed using the PEDro scale and the certainty of the evidence using the GRADE system. Meta-analyses were conducted by standardized mean difference (SMD). Initially, 760 records were located. After screening, 11 RCTs were included in the systematic review. Five studies presented low risk of bias (PEDro score ≥ 6). Evidence of very low to moderate certainty demonstrated significant effects in favor of Pilates exercises vs control groups for five of the nine HRQoL domains analyzed: bodily pain (SMD = 0.96), physical functioning (SMD = 0.85), social functioning (SMD = 0.45), role physical (SMD = 0.79), and role emotional (SMD = 0.61). Subgroup analyzes demonstrated that Pilates had a positive impact on more domains whens administered for ≥ 48 sessions (eight domains) vs < 48 sessions (three domains); and when administered on equipment (seven domains) vs mat (three domains). Pilates exercises, in general, allowed significant effects to improve HRQoL in postmenopausal women, especially when performed on equipment and when administered for at least 48 sessions. However, no analysis showed high certainty of evidence, and more RCTs of high methodological quality are needed to confirm these findings.

Abstract 7441: Health-Related quality of life and DNA methylation-based aging biomarkers among survivors of childhood cancer: Results from the St. Jude Lifetime Cohort

Abstract Background: Childhood cancer survivors often reported poorer health-related quality-of-life (HRQOL) compared to age/sex-matched controls, indicating toxic stress resulting from high burden of treatment-related late effects. This study aimed to investigate cross-sectional associations between poorer HRQOL and epigenetic age acceleration (EAA) using several epigenetic clocks as well as other DNA methylation (DNAm)-based aging biomarkers. Methods: DNAm was generated using the Infinium EPIC BeadChip version 1 with blood-derived DNA (median [min-max] for age at blood draw = 34.5 [18.5-66.6] years) from 2,206 long-term survivors in the St. Jude Lifetime Cohort. DNAm-based aging biomarkers and epigenetic age using multiple clocks (e.g., GrimAge; DNAmB2M: beta-2-microglobulin; DNAmADM: adrenomedullin) were derived from the DNAm Age Calculator (https://dnamage.genetics.ucla.edu). HRQOL was measured using the Medical Outcomes Study 36-Item Short-Form Health Survey which assesses eight domains, and physical (PCS) and mental (MCS) component summaries. General linear models evaluated associations between HRQOL and epigenetic age acceleration (EAA, e.g., EAA_GrimAge) or other DNAm-based biomarkers (e.g., chronological age adjusted residuals of DNAmB2M, which was similar to the approach in which EAA was derived) after adjusting for age, sex and cancer treatment exposures. Results: Worse physical and mental HRQOL was associated with greater EAA_GrimAge (PCS: β [95%CI]=-0.621 [-0.744, -0.499] years, P=2.48 × 10−21; MCS: -0.548 [-0.667, -0.430] years, P=2.82 × 10−18; and all eight individual HRQOL domains), followed by chronological age adjusted residuals of DNAmB2M (PCS: -0.101[-0.144, -0.058], P=2.31 × 10−5; MCS: (-0.053 [-0.094, -0.011], P=0.030; and seven HRQOL domains), and chronological age adjusted residuals of DNAmADM (PCS: -0.096 [-0.139, -0.053], P=5.45 × 10−5; and five HRQOL domains). EAA_Horvath (Horvath clock, the representative 1st generation epigenetic clock) was the least informative biomarker, which was not associated with any HRQOL domains. Conclusions: Worse HRQOL in different domains was associated with EAA_GrimAge and chronological age adjusted residuals of DNAmB2M, although future longitudinal studies are needed to illuminate the cause and consequence relationship between HRQOL and aging biomarkers. Citation Format: Noel-Marie Plonski, Yue Pan, Cheng Chen, Qian Dong, Xijun Zhang, Nan Song, Kyla Shelton, John Easton, Heather Mulder, Jinghui Zhang, Geoffrey Neale, Emily Walker, Hui Wang, Rachel Webster, Tara Brinkman, Kevin R. Krull, Gregory T. Armstrong, Kirsten K. Ness, Melissa M. Hudson, Qin Li, I-Chan Huang, Zhaoming Wang. Health-Related quality of life and DNA methylation-based aging biomarkers among survivors of childhood cancer: Results from the St. Jude Lifetime Cohort [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 7441.

Associations of comorbid depression with cardiovascular-renal events and all-cause mortality accounting for patient reported outcomes in individuals with type 2 diabetes: a 6-year prospective analysis of the Hong Kong Diabetes Register.

Psychosocial status and patient reported outcomes (PRO) [depression and health-related quality-of-life (HRQoL)] are major health determinants. We investigated the association between depression and clinical outcomes in Chinese patients with type 2 diabetes (T2D), adjusted for PRO. Using prospective data from Hong Kong Diabetes Register (2013-2019), we estimated the hazard-ratio (HR, 95%CI) of depression (validated Patient Health Questionnaire 9 (PHQ-9) score≥7) with incident cardiovascular disease (CVD), ischemic heart disease (IHD), chronic kidney disease (CKD: eGFR<60 ml/min/1.73m2) and all-cause mortality in 4525 Chinese patients with T2D adjusted for patient characteristics, renal function, medications, self-care and HRQoL domains (mobility, self-care, usual activities, pain/discomfort, anxiety/depression measured by EQ-5D-3L) in linear-regression models. In this cohort without prior events [mean ± SD age:55.7 ± 10.6, 43.7% women, median (IQR) disease duration of 7.0 (2.0-13.0) years, HbA1c, 7.2% (6.6%-8.20%), 26.4% insulin-treated], 537(11.9%) patients had depressive symptoms and 1923 (42.5%) patients had some problems with HRQoL at baseline. After 5.6(IQR: 4.4-6.2) years, 141 patients (3.1%) died, 533(11.8%) developed CKD and 164(3.6%) developed CVD. In a fully-adjusted model (model 4) including self-care and HRQoL, the aHR of depression was 1.99 (95% confidence interval CI):1.25-3.18) for CVD, 2.29 (1.25-4.21) for IHD. Depression was associated with all-cause mortality in models 1-3 adjusted for demographics, clinical characteristics and self-care, but was attenuated after adjusting for HRQoL (model 4- 1.54; 95%CI: 0.91-2.60), though HR still indicated same direction with important magnitude. Patients who reported having regular exercise (3-4 times per week) had reduced aHR of CKD [0.61 (0.41-0.89)]. Item 4 of PHQ-9 (feeling tired, little energy) was independently associated with all-cause mortality with aHR of 1.66 (1.30-2.12). Depression exhibits significant association with CVD, IHD, and all-cause mortality in patients with diabetes, adjusting for their HRQoL and health behaviors. Despite the association between depression and all-cause mortality attenuated after adjusting for HRQoL, the effect size remains substantial. The feeling of tiredness or having little energy, as assessed by item Q4 of the PHQ-9 questionnaire, was found to be significantly associated with an increased risk of all-cause mortality after covariate adjustments. Our findings emphasize the importance of incorporating psychiatric evaluations into holistic diabetes management.

Abstract 3411: Health-related quality of life trajectories in older breast cancer survivors and noncancerous controls over ten years: SEER-MHOS analysis

Abstract Background: The adverse effects of cancer treatment on health-related quality of life (HRQOL) are the primary concern of older women diagnosed with breast cancer. The interplay of transient and progressive functional impairments caused by cancer therapies alongside the accelerated physical declines associated with the normal aging process are all negatively correlated to HRQL, yet it remains unclear whether this is an effect of cancer or solely aging; therefore, this study examined HRQL trajectory over ten years after diagnosis between cancer cases and controls. Methods: The cancer group included 1467 women (age ≥ 65) diagnosed with primary breast cancer in 1998 - 2012, registered in the Surveillance, Epidemiology, End Results (SEER) cancer registry, and completed Medical Health Outcomes (MHO) surveys before and after cancer diagnosis. Propensity score-matched controls were randomly selected with a 1:1 ratio. Participants reported their HRQOL using SF-36/VR-12. It was summarized into two summary scores (Physical Component Summary [PCS] and mental component summary [MCS]) and eight domain scores (physical functioning [PF], role limitation due to physical health [RP], bodily pain [BP], general health [GH], vitality [VT], social functioning [SF], mental health [MH], and role limitation due to emotional problem [RE]). Hierarchical linear modeling was utilized to assess the main effects of time and group and the interaction effect between time and group on HRQOL trajectory. Results: At diagnosis, cases fared worse than controls for all HRQOL domains and summary scores. Over the ten years, PCS, PF, GH, RP, SF, and VT worsened over time (all P for time &amp;lt; 0.05), while MCS, MH, and RE remained relatively constant over time (all P for time ≥ 0.05). Older women with breast cancer had lower HRQL over time than controls in PCS, GH, and RP domains, while they showed higher HRQOL than controls post 4 - 7 years in PF, SF, RE, and VT domains (all P for group &amp;lt; 0.05). However, only RE showed a statistically significant interaction effect (P =0.035), improving over time in cases but worsening in controls. Conclusions: This research shows both older women with breast cancer and propensity-matched controls experiencing deterioration of HRQOL, particularly physical health domains, over ten years after baseline, with cases’ HRQOL kept lower than controls over time. Needs assessment and more efficient interventions to improve physical health HRQOL among older women are warranted. Citation Format: Eunkyung Lee, Maria Azevedo Daruge, Katia Ferdowsi, Jianbin Zhu. Health-related quality of life trajectories in older breast cancer survivors and noncancerous controls over ten years: SEER-MHOS analysis [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 3411.

Health-Related Quality of Life of Omani Adult Patients with Sickle Cell Disease at the Sultan Qaboos University Hospital

Objectives: The quality of life of Omani adults with sickle cell disease (SCD) is not yet known. This study aimed to determine the health-related quality of life (HRQoL) of adult Omani patients with SCD attending a single tertiary center. Methods: A cross-sectional study was conducted among patients with SCD from June to October 2022 at the Sultan Qaboos University Hospital. A validated Arabic version of the 36-Item Short-Form Health Survey (SF-36) was used to assess HRQoL over eight domains. Results: A total of 235 patients with SCD participated in the study, of which the majority were female (74.9%) and 18–35 years of age (64.6%). The lowest HRQoL was reported for the domain of role limitations due to physical health (median score: 25.0; interquartile range [IQR]: 35.0), while the highest was seen for role limitations due to emotional problems (median score: 66.7, IQR: 100.0). Frequent SCD-related emergency department visits/hospital admissions and the adverse effect of SCD on patients’ social lives had a significant negative impact on SF-36 scores for all eight HRQoL domains (p ≤0.05). In addition, the impact of SCD on academic performance and a history of having been bullied due to SCD had a significant negative impact on SF-36 scores for several domains (p ≤0.05). Conclusion: Omani adult patients with SCD reported relatively poor HRQoL in several domains, with various factors found to have significant associations with poorer HRQoL. Healthcare providers and policy-makers should consider offering additional clinical, educational, and financial support to patients to enhance their HRQoL.&#x0D; Keywords: Sickle Cell Disease; Health-Related Quality of Life; Adults; Oman

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 (DNAm)-based aging biomarkers and HRQOL have not been evaluated. DNAm was generated with Infinium EPIC BeadChip on blood-derived DNA (median[range] for age at blood draw = 34.5[18.5-66.6] years) and HRQOL was assessed with age at survey (32.3[18.4-64.5] years) from 2,206 survivors in the St Jude Lifetime Cohort. DNAm-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 eight domains, and physical and mental component summaries (PCS and MCS). General linear models evaluated associations between HRQOL and epigenetic age acceleration (EAA, eg, EAA_GrimAge) or other age-adjusted DNAm-based biomarkers (eg, ageadj_DNAmB2M) after adjusting for age at blood draw, sex, cancer treatments, and DNAm-based surrogate for smoking pack-years. All P values were 2-sided. Worse HRQOL was associated with greater EAA_GrimAge (PCS β[95%CI]=-0.18[-0.251,-0.11] years, P = 1.85 × 10-5; and four individual HRQOL domains), followed by ageadj_DNAmB2M (PCS: -0.08[-0.124,-0.037], P = .003; and three individual HRQOL domains), and ageadj_DNAmADM (PCS: -0.082[-0.125,-0.039], P = .002; and two HRQOL domains). EAA_Hannum (Hannum clock) was not associated with any HRQOL. Overall and domain-specific measures of HRQOL are associated with DNAm 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.

Health-related quality of life among patients with esophageal, gastric, and colorectal cancer at Kenyatta National Hospital.

Despite the advancement of modern treatment approaches, several studies indicated a diminished health-related quality of life (HRQoL) in patients with gastrointestinal cancer. However, there is insufficient data about the HRQoL of gastrointestinal cancer patients in Kenya. The study aimed to investigate HRQoL and its determinants in gastrointestinal cancer patients at Kenyatta National Hospital. A cross-sectional study was employed among 160 esophageal, 103 gastric, and 96 colorectal cancer patients. The patient list, identified by unique hospital identification numbers, was obtained from records. Eligibility was assessed based on predetermined criteria, and the hospital identification numbers were reshuffled. Study participants were then randomly selected daily during the data collection period. Data were collected using a researcher-administered European Organization for Research and Treatment of Cancer quality of life questionnaire. The data entry and analysis were carried out using Statistical Package for the Social Sciences 26.0 statistical software. A bivariate and multivariate binary logistic regression analysis was employed to investigate determinants of HRQoL at a 0.05 level of significance. Most esophageal (N = 118, 73.7%), gastric (N = 75, 72.8%), and colorectal (N = 72, 75%) cancer patients had poor overall HRQoL. In the social (p = .04) and cognitive (p = .02) domain of HRQoL, esophageal cancer patients had a significantly lower mean score as compared to gastric cancer patients. Colorectal cancer patients had the highest mean score in physical functioning (p = .01) as compared with gastric cancer patients. Nonetheless, gastric cancer patients had the highest mean score in emotional functioning domains of quality of life as compared to esophageal (p = .04) and colorectal (p < .001) cancer patients The study revealed a low mean HRQoL score in the majority of the symptom domains of quality of life. A statistically significant difference in all domains of HRQoL was not observed in various treatment modalities of gastrointestinal cancer. Advanced-stage (stages III and IV) and co-morbidities were significant determinants of poor HRQoL. The overall HRQoL of gastrointestinal cancer patients was poor. Advanced-stage cancer and co-morbidities were significant determinants of poor HRQoL. Therefore, intensification of routine monitoring of the disease and the treatments should be actively implemented to improve the HRQoL.

Recent Advancements in the Atopic Dermatitis Mechanism.

Atopic dermatitis (AD) is a recurrent, chronic, inflammatory, itchy skin disorder that affects up to 20% of the pediatric population and 10% of the adult population worldwide. Onset typically occurs early in life, and although cardinal disease features are similar across all ages, different age groups and ethnicities present distinct clinical characteristics. The disease imposes a significant burden in all health-related quality of life domains, both in children and adults, and a substantial economic cost both at individual and national levels. The pathophysiology of AD includes a complex and multifaceted interplay between the impaired dysfunctional epidermal barrier, genetic predisposition, and environmental contributors, such as chemical and/or biological pollutants and allergens, in the context of dysregulated TH2 and TH17 skewed immune response. Regarding the genetic component, the loss of function mutations encoding structural proteins such as filaggrin, a fundamental epidermal protein, and the more recently identified variations in the epidermal differentiation complex are well-established determinants resulting in an impaired skin barrier in AD. More recently, epigenetic factors have facilitated AD development, including the dysbiotic skin microbiome and the effect of the external exposome, combined with dietary disorders. Notably, the interleukin (IL)-31 network, comprising several cell types, including macrophages, basophils, and the generated cytokines involved in the pathogenesis of itch in AD, has recently been explored. Unraveling the specific AD endotypes, highlighting the implicated molecular pathogenetic mechanisms of clinically relevant AD phenotypes, has emerged as a crucial step toward targeted therapies for personalized treatment in AD patients. This review aims to present state-of-the-art knowledge regarding the multifactorial and interactive pathophysiological mechanisms in AD.

HIV, multimorbidity, and health-related quality of life in rural KwaZulu-Natal, South Africa: A population-based study.

Health-related quality of life (HRQoL) assesses the perceived impact of health status across life domains. Although research has explored the relationship between specific conditions, including HIV, and HRQoL in low-resource settings, less attention has been paid to the association between multimorbidity and HRQoL. In a secondary analysis of cross-sectional data from the Vukuzazi ("Wake up and know ourselves" in isiZulu) study, which identified the prevalence and overlap of non-communicable and infectious diseases in the uMkhanyakunde district of KwaZulu-Natal, we (1) evaluated the impact of multimorbidity on HRQoL; (2) determined the relative associations among infectious diseases, non-communicable diseases (NCDs), and HRQoL; and (3) examined the effects of controlled versus non-controlled disease on HRQoL. HRQoL was measured using the EQ-5D-3L, which assesses overall perceived health, five specific domains (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression), and three levels of problems (no problems, some problems, and extreme problems). Six diseases and disease states were included in this analysis: HIV, diabetes, stroke, heart attack, high blood pressure, and TB. After examining the degree to which number of conditions affects HRQoL, we estimated the effect of joint associations among combinations of diseases, each HRQoL domain, and overall health. Then, in one set of ridge regression models, we assessed the relative impact of HIV, diabetes, stroke, heart attack, high blood pressure, and tuberculosis on the HRQoL domains; in a second set of models, the contribution of treatment (controlled vs. uncontrolled disease) was added. A total of 14,008 individuals were included in this analysis. Having more conditions adversely affected perceived health (r = -0.060, p<0.001, 95% CI: -0.073 to -0.046) and all HRQoL domains. Infectious conditions were related to better perceived health (r = 0.051, p<0.001, 95% CI: 0.037 to 0.064) and better HRQoL, whereas non-communicable diseases (NCDs) were associated with worse perceived health (r = -0.124, p<0.001, -95% CI: 0.137 to -0.110) and lower HRQoL. Particular combinations of NCDs were detrimental to perceived health, whereas HIV, which was characterized by access to care and suppressed viral load in the large majority of those affected, was counterintuitively associated with better perceived health. With respect to disease control, unique combinations of uncontrolled NCDs were significantly related to worse perceived health, and controlled HIV was associated with better perceived health. The presence of controlled and uncontrolled NCDs was associated with poor perceived health and worse HRQoL, whereas the presence of controlled HIV was associated with improved HRQoL. HIV disease control may be critical for HRQoL among people with HIV, and incorporating NCD prevention and attention to multimorbidity into healthcare strategies may improve HRQoL.

Abstract WP246: CHA 2 DS 2 -VASC Score Predicts Outcomes After a Stroke or Transient Ischemic Attack

Introduction: The CHA 2 DS 2 -VASC score is used to predict stroke in people with atrial fibrillation (AF). We determined the utility of this score for predicting outcomes within one-year post-stroke/TIA. Methods: Analysis of adults with acute stroke/TIA (2012-2016) using linked data from the Australian Stroke Clinical Registry and administrative datasets (pharmaceutical, hospital, Medicare), as part of the PRECISE study. CHA 2 DS 2 -VASC score (ranging from 0-9) was estimated based on comorbidities documented in hospital data as of the time of acute stroke/TIA. Outcomes included health-related quality of life (HRQoL) at 90-180 days post-stroke/TIA; and all-cause mortality and hospital readmissions (all-cause, cardiovascular disease) within 1 year post-stroke/TIA. HRQoL was assessed using the EuroQoL 5D-3L visual analogue scale (VAS) score, ranging from 0 (worst health) - 100 (best health), and across health domains (mobility, self-care, usual activities, pain/discomfort, anxiety/depression). Regression models were used to determine associations with outcomes, with risk estimates were expressed per 1-point increase in CHA 2 DS 2 -VASC score, and adjusted for covariates (e.g. use of medications) and interaction with AF history. Results: Of 12,613 eligible participants (median age 74 years; 44% female; 26% AF history), the median CHA 2 DS 2 -VASC score was 4 (i.e., high risk; interquartile range 3-6). In multivariable models, greater CHA 2 DS 2 -VASC score was associated with increased rates of mortality (hazard ratio [HR] 1.28 95% CI 1.23-1.33) in people with AF history only. Regardless of AF history, greater CHA 2 DS 2 -VASC score was associated with reduced VAS scores (by -1.57, 95% CI -1.99, -1.15), and increased odds of reporting problems in each HRQoL domain, ranging from odds ratio of 1.36 (95% CI 1.31-1.41) for mobility to 1.05 (95% CI 1.02-1.09) for anxiety/depression. Greater CHA 2 DS 2 -VASC score was also associated with increased rates of readmission for all causes (HR 1.11, 95% CI 1.08-1.14) or cardiovascular causes (HR 1.10; 95% CI 1.05-1.15). Conclusion: CHA 2 DS 2 -VASC score as of the time of acute stroke/TIA is associated with worse long-term outcomes, including HRQoL, within 1 year, and may be useful for risk stratification post-stroke/TIA.

Impact of community health workers on quality of life in adolescents and young adults with sickle cell disease: The SHIP-HU study.

Health-related quality of life (HRQoL) is an important outcome for patients with sickle cell disease (SCD). It is often poor compared with other chronic medical conditions or measured as a multidomain disease-specific construct. We previously reported outcomes in the Start Healing in Patients with Hydroxyurea (SHIP-HU) randomized controlled trial in adolescents and adults with SCD at six clinical sites. Besides the primary outcomes, we also measured HRQoL as a secondary outcome. Patients in the intervention arm were each assigned community health workers (CHWs) who provided case management services. CHW services were independent of medical management, and medical managers were blinded to the study arm. Patients in the control arm received only standard of care. We hypothesized that having a CHW would improve HRQoL in patients enrolled in SHIP-HU. We did not find significant differences between domains of HRQoL in the two study arms. Possible explanations include selection bias of enrolled versus unenrolled patients, selection bias of sites, medical providers and medical management, enforced blinding, and a lack of cooperation between medical managers and CHWs. The importance of CHWs and HRQoL is nonetheless recognized based on the literature. Future interventions on HRQoL in SCD should consider alternative study designs and multimodal interventions.

Do pre-transplant cultural factors predict health-related quality of life after kidney transplantation?

Post-transplant health-related quality of life (HRQOL) is associated with health outcomes for kidney transplant (KT) recipients. However, pretransplant predictors of improvements in post-transplant HRQOL remain incompletely understood. Namely, important pretransplant cultural factors, such as experience of discrimination, perceived racism in healthcare, or mistrust of the healthcare system, have not been examined as potential HRQOL predictors. Also, few have examined predictors of decline in HRQOL post-transplant. Using data from a prospective cohort study, we examined HRQOL change pre- to post-transplant, and novel cultural predictors of the change. We measured physical, mental, and kidney-specific HRQOL as outcomes, and used cultural factors as predictors, controlling for demographic, clinical, psychosocial, and transplant knowledge covariates. Among 166 KT recipients (57% male; mean age 50.6 years; 61.4%>high school graduates; 80% non-Hispanic White), we found mental and physical, but not kidney-specific, HRQOL significantly improved post-transplant. No culturally related factors outside of medical mistrust significantly predicted change in any HRQOL outcome. Instead, demographic, knowledge, and clinical factors significantly predicted decline in each HRQOL domain: physical HRQOL-older age, more post-KT complications, higher pre-KT physical HRQOL; mental HRQOL-having less information pre-KT, greater pre-KT mental HRQOL; and, kidney-specific HRQOL-poorer kidney functioning post-KT, lower expectations for physical condition to improve, and higher pre-KT kidney-specific HRQOL. Instead of cultural factors, predictors of HRQOL decline included demographic, knowledge, and clinical factors. These findings are useful for identifying patient groups that may be at greater risk of poorer post-transplant outcomes, in order to target individualized support to patients.

Health-Related Quality of Life Assessment for Liver Cirrhosis Patients at a Tertiary Care Hospital in Karachi, Pakistan.

Background The global health challenge of cirrhosis affects millions of individuals. Still, there is a notable lack of research on the health-related quality of life (HRQOL) of cirrhosis patients, especially in specific regions. This study aims to assess the impact of cirrhosis onHRQOL, including factors influencing it in a tertiary care setting in Pakistan. Methodology A cross-sectional study was conducted on a cohort of 115 patients diagnosed with cirrhosis, confirmed on imaging. HRQOL was measured using the short-form 36 (SF-36) survey. Furthermore, socioeconomic factors and self-rated health perceptions regarding HRQOL were recorded. Factors Influencing HRQOL domains in liver cirrhosis patients were also analyzed. Results Among 115 liver cirrhosis patients, 63.5% (N=73) were aged 40-60 years, and 73.9% (N=85) lived primarily in urban areas. HRQOLassessments highlighted moderate disability in physical functioning (62.6 ± 26.5) and notable impacts on mental health, emotional well-being, and bodily pain. Statistical analysis demonstrated the complexity of factors influencing HRQOL. Physical functioning was significantly associated with a higher Child-Turcotte-Pugh class, diabetes mellitus, hypertension, smoking status, and family monthly income (p-value < 0.05). While the duration of liver cirrhosis showed a significant association with bodily pain (p < 0.05). Additionally, residence status with social well-being (p-value = 0.01), and family monthly income with vitality (p-value < 0.05). Conclusion Our study in Pakistan highlights significant impacts on the HRQOLof liver cirrhosis patients, affecting physical function, mental health, emotional well-being, and bodily pain. Factors influencing HRQOL include liver disease severity, comorbidities, and socio-economic status.Recommendations include educational programs and specialized nursing care to address diverse challenges.The findings stress the importance of a personalized approach to patient care, urging urgent, targeted efforts to improve the health-related standard of life for cirrhotic patients.

Epidemiology, treatment patterns, and humanistic and economic burden of biliary tract carcinoma: A systematic and targeted literature review.

443 Background: Patients with biliary tract cancers (BTC) are typically diagnosed at late stage, with limited treatment options. As such, BTC is associated with poor prognosis, high economic burden and reduced health-related quality of life (HRQoL). As the treatment paradigm is evolving, with multiple immunotherapies showing promise, this study aimed to assess the current disease and treatment landscape. Methods: Systematic literature reviews (Embase, MEDLINE, Cochrane, NHS-EED; database inception to Feb 10, 2023) were conducted for HRQoL and economic burden. Targeted literature reviews (Embase, MEDLINE) were conducted for epidemiology (Jan 01 2017–Feb 06 2023) and treatment guidelines/patterns (Jan 01 2012–Feb 06 2023). Conference abstracts were also searched (2019–2022). Eligibility criteria included global studies (English language) in adults with metastatic and/or unresectable BTC. Results: Overall, 264 studies were included (epidemiology=170, treatment guidelines=14, treatment patterns=50, HRQoL=12, economic burden=18). In the US, Europe and Asia, age-standardized incidence rates were 5.04, 8.39–8.78 and 9.1–10.1 (per 100,000 person-years) and prevalence rates were 0.01%, 0.02–0.34% and 0.02–2.61%, respectively. Treatment pattern studies were mainly from Asia, Europe (n=19 each) and North America (n=10). Gemcitabine [gem]-based chemotherapy was most common in 1L BTC (24–100%) and fluorouracil-based regimens were common in 2L+ BTC (12.3–74.3%). Median overall survival (mOS) for gem-based and fluorouracil-based 1L regimens were 7.7–14.8 months and 7–16.7 months, respectively. Disease progression/toxicity frequently led to treatment discontinuation/dose modifications. In the US, use of non-guideline-based regimens increased by line of therapy (LOT). Among the clinical studies (n=5) reporting HRQoL in 1L, n=4 assessed gem-based combinations. BTC impaired HRQoL domains for anxiety, tiredness (EORTC QLQ-BIL21), work productivity, activity impairment (WPAI scale) and depression (PHQ-9). BTC was associated with substantial economic burden. Mean total all-cause healthcare costs per patient per month (PPPM) increased by LOT (US; 1L: $19,589–25,517, 2L: $22,617–29,721, 3L: $23,256–33,534). US healthcare resource utilization in 1L was driven by outpatient visits (98%), emergency department visits (33–80%) and hospitalization (70–80%). Mean hospital stay ranged from 0.6–7 days PPPM. Conclusions: Epidemiology data varied between Western and Asian populations, but gem-based chemotherapy was identified as the standard of care across regions. There is high unmet need in advanced BTC, as existing options are characterized by poor survival outcomes and considerable economic burden. These findings indicate a need for novel approaches for the management of BTC.

Management and use of healthcare resources in patients with chronic lymphocytic leukemia initiating venetoclax in routine clinical practice

Venetoclax is a first-in-class B-cell lymphoma-2 (BCL-2) inhibitor approved as continuous monotherapy and in combination with rituximab as fixed-treatment duration for relapsed and refractory chronic lymphocytic leukemia (R/R CLL). DEVOTE was a 24-week, multicenter observational study (NCT03310190) evaluating the safety, healthcare resource utilization (HCRU) and health-related quality of life (HRQoL) of patients initiating venetoclax for R/R CLL in Canada. Overall, 89 patients received 1 dose of venetoclax; 80% had prior exposure (42% resistant) to ibrutinib. Biochemical tumor lysis syndrome (TLS) occurred in five patients. We observed differences in hospitalization across Canadian provinces including in patients at low risk for TLS with no clear impact on TLS incidence. Additionally, a rapid and sustained improvement in several domains of HRQoL was observed during venetoclax initiation. Early adoption of venetoclax was mainly for R/R CLL patients with few treatment options; nonetheless, acceptable toxicity and a positive impact on HRQoL were observed.

Quality of Life in Patients with Excellent 3-Month Clinical Outcome after First-Ever Ischemic Stroke: A Time to Redefine Excellent Outcome?

Introduction: Ischemic stroke (IS) may have impact on long-term health-related quality of life (HRQoL) even in the patients with good clinical outcome, and tools mostly used for the assessment of outcome may underestimate or not reflect all relevant sequels after IS. We aimed to analyze HRQoL in the patients with excellent outcome after IS. Methods: We analyzed consecutive IS patients enrolled in the prospective FRAILTY study (ClinicalTrials.gov: NCT04839887) with excellent 3-month clinical outcome (score 0–1 in modified Rankin Scale [mRS]). Stroke Impact Scale (SIS) version 3.0 and Hospital Anxiety and Depression Scale (HADS) were used for the HRQoL, anxiety, and depression assessments, and subgroup comparisons were performed according to NIHSS score (0, ≥1), age (50<, ≥50 years), and sex. Results: In total, 158 patients (55.7% men, mean age 60.3 ± 13.4 years) were analyzed, and 72.2% of them had score 0 in mRS. The overall lowest median scores were found in the SIS domain “emotion,” “strength,” and “participation.” Patients with NIHSS ≥1 had lower scores in all SIS domains except “emotions” and “mobility.” Patients ≥50 years had lower score in “mobility” (p = 0.004) and females in domain of “social participation” (p = 0.044). No differences were found among all subgroups in HADS anxiety and depression. Age, NIHSS score, and depression were found negative predictors for the physical domains of HRQoL. Discussion/Conclusions: Despite excellent 3-month clinical outcome after IS, patients had affected substantially their HRQoL, especially those with NIHSS ≥1. Patients ≥50 years had more affected “mobility” and females “social participation.”

A153: The Relationships Between Physical Activity and Health-Related Quality of Life in Parent-Child Dyads with ASD

Purpose: Researchers have found that the core and combined symptoms of autism spectrum disorder (ASD) negatively influence the health-related quality of life (HRQoL) of autistic children and their parents. Although it is supported that participation in physical activity (PA) can enhance the HRQoL and well-being in general, few studies have addressed the relationship between HRQoL with PA in the population with ASD. This study examines how much leisure-time physical activity participation is correlated to HRQoL in parent-child dyads with ASD. Method: Participants were recruited from two Rehabilitation Centers for neurodevelopmental disability children. Eighty-five ASD children and their parents participated in this study. HRQoL for ASD children and their parents was measured with the World Health Organization Quality of Life short form (WHOQoL-26) and the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0, parent-report version) respectively, while leisure-time PA participation of both children and parents was assessed using the Godin Leisure-Time Exercise Questionnaire (GLTEQ). We first confirmed the psychometrics of the WHOQoL-26 and PedQL 4.0 and then analyzed the relationships between different levels of PA and HRQoL in dyads. Results: Descriptive statistics showed that 30.6% of ASD children (Mage=5.25±1.48; 85.9% boys) and 42.4% of their parents (75.3% between 31-40 years; 73 mothers and 12 fathers) were insufficiently active. For parents of children with ASD, the physical domain of HRQoL had a small positive correlation with light PA (r=0.27, p=0.013) while the psychology domain had a small to moderate positive correlation with moderate (r= 0.23, p=0.04), light (r=0.3, p=0.006), and total (r=0.23, p=0.032) PA. Also, the environment domain of HRQoL had a small positive correlation with moderate (r=0.28, p=0.011) and light (r=0.32, p=0.003) PA. Concerning ASD children, the physical domain of HRQoL had a small to moderate positive correlation with moderate (r= 0.24, p= 0.027) and total (r= 0.32, p= 0.004) PA. Furthermore, there were several interrelationships between parent-child dyads’ PA and parent-child dyads’ HRQoL. ASD children’s social domain in HRQoL was correlated to their parents’ light PA (r=0.25, p=0.021) whereas parents’ environment domain was correlated to their children’s mild PA (r=0.24, p=0.03). Conclusion: There are significant relationships between PA and HRQoL for both children with ASD and their parents. Particularly, the parent-child dyads’ HRQoL may benefit from each other’s leisure-time PA involvement. Due to ASD children’s restricted daily PA norm and their parent’s challenging caregiving environment, the designation of effective PA enhancement strategies may enhance the quality of life in both children with ASD and their parents.

Effects of Radio-Taiso on Health-Related Quality of Life in Older Adults with Frailty: A Randomized Controlled Trial.

Radio-Taiso could be a sustainable public health strategy for maintaining quality of life (QoL) in older adults with frailty. This study aimed to investigate whether Radio-Taiso provided greater benefits for health-related quality of life (HR-QoL) and to identify the mechanisms underlying the effectiveness in this population. A 12-week randomized controlled trial enrolled 226 older Japanese adults with pre-frailty or frailty, assessed using the modified frailty phenotype. Participants were randomly allocated to the intervention (Radio-Taiso + nutrition program) or control (nutrition program) groups. The Radio-Taiso program comprised five 60-min group sessions and daily practice at the participants' homes. The primary outcome was the change in the mental domain of HR-QoL, assessed using the SF-36®. The secondary outcomes included six physical fitness items and exercise self-efficacy. Overall, 104 and 105 participants in the intervention and control groups, respectively, were analyzed based on the intention-to-treat principle. The median (interquartile range) daily practice rate of Radio-Taiso was 94.1% (73.2-98.8%). Although general linear models adjusted for baseline values and allocation stratification factors showed that the intervention group obtained greater benefits (adjusted mean differences [95% confidence intervals]) in the up-and-go (0.3 [0.1, 0.6] s), 2-min step-in-place (-3.2 [-6.2, -0.2] steps) tests, and exercise self-efficacy scale (-1.4 [-2.6, -0.1] points) than the control group, there were no group differences in changes in the mental domain score of HR-QoL. Radio-Taiso provided greater benefits for agility/dynamic balance, aerobic endurance, and exercise self-efficacy in older adults with frailty; however, these changes do not improve HR-QoL.