The CONVINCE randomized trial found positive effects on quality of life for patients with chronic kidney disease treated with hemodiafiltration.

In the CONVINCE trial, the primary analysis demonstrated a survival benefit for patients receiving high-dose hemodiafiltration (HDF) as compared with high-flux hemodialysis (HD). A secondary objective was to evaluate effects on health-related quality of life (HRQoL); assessed in eight domains (physical function, cognitive function, fatigue, sleep disturbance, anxiety, depression, pain interference, social participation) applying instruments from the Patient-Reported Outcome Measurement Information System (PROMIS) before randomization and every three months thereafter. In total 1360 adults with dialysis-dependent chronic kidney disease, eligible to receive high-flux HDF (23 liters or more), were randomized (1:1); 84% response rate to all questionnaires. Both groups reported a continuous deterioration in all HRQoL domains. Overall, raw score changes from baseline were more favorable in the HDF group, resulting in a significant omnibus test after a median observation period of 30 months. Most relevant single raw score differences were reported for cognitive function. Patients receiving HDF reported a decline of -0.95 units (95% confidence interval - 2.23 to +0.34) whereas HD treated patients declined by -3.90 units (-5.28 to - 2.52). A joint model, adjusted for mortality differences, utilizing all quarterly assessments, identified a significantly slower HRQoL decline in physical function, cognitive function, pain interference, and social participation for the HDF group. Their physical health summary score declined -0.46 units/year slower compared to the HD group. Thus, the CONVINCE trial showed a beneficial effect of high-dose hemodiafiltration for survival as well as a moderate positive effect on patients' quality of life, most pronounced with respect to their cognitive function.

The role of hypervigilance in chronic esophageal diseases: a scoping review.

Background: Hypervigilance has emerged as an important construct in esophageal symptom reporting, but a review of the literature does not currently exist. This scoping review aimed to generate a comprehensive overview of the literature on hypervigilance in esophageal diseases and summarize the evidence for each esophageal disease. Methods: Guided by the Joanna Briggs Institute scoping review methodology, articles that were peer-reviewed original studies, published in English, and included adult patients with at least one esophageal disease were included. Articles were retrieved from PubMed and Embase databases and screened first by title and abstract for an initial round of exclusions, and then again by full text for a second round of exclusions. Results: Nineteen studies were included. Studies were categorized by primary diagnosis: achalasia (1, 5%), eosinophilic esophagitis (1, 5%), gastroesophageal reflux disease (GERD) (6, 32%), laryngopharyngeal reflux (3, 16%), non-cardiac chest pain (3, 16%), and multi-disorder samples (5, 26%). Studies primarily evaluated associations between hypervigilance and symptom severity, psychosocial functioning, health-related quality of life, and physiological disease variables. A number of studies also evaluated hypervigilance across esophageal diseases or presentations (e.g., across motility disorders, across GERD phenotypes). Conclusions: The role of hypervigilance in symptom reporting has been investigated in multiple esophageal conditions. Findings suggest potential clinical utility in assessing hypervigilance, such as for disease conceptualization and treatment planning. Future research is needed in larger samples, with consistent measures of hypervigilance, and using data synthesis methodology (i.e., systematic reviews) to better compare and contrast findings across studies.

Madrasa student's health-related quality of life and its associated factors: a cross-sectional study from Bangladesh.

The evidence clearly shows that education greatly impacts people's well-being. Bangladesh has two main education systems-general and traditional religious schooling. The current study aimed to measure the quality of life of madrasa students and find out the factors influencing it. This was a cross-sectional study on a group of madrasa students in the Mirpur area of Dhaka, Bangladesh. Data were collected using two-stage stratified random sampling between April and May 2022. The final sample size was 373. The health-related quality of life (HRQoL) was calculated using the KIDSCREEN-10 index, and the median split was used to categorize the score into 'good' and 'poor' categories. A p < 0.05 was considered statistically significant for all statistical tests. Among the participants, most (56%) reported having a good HRQoL. The median age (IQR) of the participants was 10.0 (8.0-12.0) years. Most of the participants were male (91%) and were not orphans (95%). The current study also found that a higher feeling of safety (AOR 3.7; 95% CI 1.3-10.4; p = 0.016) increased the odds of having good HRQoL. However, having a present illness decreased the odds (AOR 0.6; 95% CI 0.4-0.9; p = 0.10) of having a good HRQoL. The key results show that the majority reported a good HRQoL. Promoting students' physical, mental, and social well-being through health education, anti-bullying initiatives, regular school health screening, and institutional & community involvement can help to improve the overall HRQoL of madrasa students.

The validity of single-item measures of health-related quality of life across groups differing in acute respiratory symptom severity.

PURPOSE: Practical considerations precluding health-related quality of life (HRQOL) monitoring in population and clinical research have spawned development of improved items for more brief surveys of frequently measured HRQOL outcomes. The aim of this study was to validate the use of the Quality of Life General (QGEN-8), a shorter 8-item alternative to the longer 36-item short form (SF)-36 Health Survey for measuring the same eight HRQOL domains across groups of adults with varying severity of acute respiratory symptoms, such as cough and sore throat. METHODS: National Opinion Research Center (NORC) representative probability (N = 1,648) and supplemental opt-in (N = 5,915) U.S. adult samples were surveyed cross-sectionally online in 2020. Parallel analyses compared QGEN-8 and SF-36 estimates of group means for each of eight matching profile domains and summary physical and mental scores across groups differing in severity of acute symptoms and chronic respiratory conditions using analysis of covariance (ANCOVAs) controlling for socio-demographics and presence of chronic respiratory conditions. RESULTS: In support of discriminant validity, ANCOVA estimates of QGEN-8 means with SF-36 estimates revealed the same patterns of declining HRQOL with the presence and increasing severity of symptoms and chronic condition severity. CONCLUSION: QGEN-8® shows satisfactory validity and warrants further testing in cross-sectional and longitudinal population and clinical survey research as a more practical method for estimating group differences in SF-36 profile and summary component HRQOL scores.

Upper respiratory tract infections (URTI) with symptoms such as cough and sore throat are highly prevalent and negatively impact on health-related quality of life (HRQOL). Existing instruments that comprehensively measure HRQOL are lengthy, potentially increasing respondent burden and restricting their use in clinical studies and research. The aim of this study was to evaluate whether eight newly constructed survey items, the QGEN-8®, measure the same HRQOL outcomes as the 36-item SF-36 Health Survey well enough to serve as a more practical alternative for purposes of detecting the physical and mental HRQOL effects on differing severity of acute URTI symptoms, specifically cough and sore throat. The results showed that the QGEN-8® was psychometrically sound and able to differentiate between different levels of URTI symptoms, even in cases where respondents had chronic respiratory conditions. This indicates that the briefer QGEN-8® with 75% shorter response time is able to provide HRQOL measurements comparable to those derived from lengthier instruments thereby lending itself more readily to use in clinical studies and research of URTI symptoms, such as cough and sore throat.

Association between air temperature and self-perceived health status in Southern Germany: Results from KORA FIT study.

BACKGROUND: Short-term exposure to low and high air temperatures can cause serious harmful effects on human health. Existing literature has mostly focused on associations of ambient air temperature with mortality and the need for health care in population-level studies. Studies that have considered self-perceived health status as an outcome when examining the effects of air temperature on health are scarce. In this study, we explored the short-term association of daily mean air temperature with various measures of self-perceived health status. METHODS: This cross-sectional analysis is based on the Cooperative Health Research in the Region of Augsburg (KORA) FIT study conducted in 2018/2019 and included participants from the Augsburg region of Southern Germany. Health-related quality of life (HRQOL) was evaluated by using the 5-level EuroQol Five Dimension (EQ-5D-5L) questionnaire, including the EuroQol visual analog scale (EQ-VAS). Self-rated health (SRH) and comparative self-rated health (CSRH) were each assessed using a single question. Daily mean air temperature data was estimated using a spatiotemporal model and assigned to participants' home addresses at a resolution of 1 × 1 km. Regression models with a Distributed Lag Non-linear Modeling (DLNM) approach were used to investigate the associations between daily mean air temperature and self-perceived health measures. RESULTS: We found no association of heat or cold with the HRQOL, SRH or CSRH. Nevertheless, there was a significant protective association of low air temperature with the EQ-5D-5L dimension "usual activities." CONCLUSION: There was no evidence of daily mean air temperature adversely affecting participants' self-perceived health status.

Quality of life among borderline ovarian tumor survivors: A comparison with survivors of early-stage ovarian cancer and a cancer-free population: A cross-sectional population-based PROFILES study.

OBJECTIVE: This study assessed the health-related quality of life (HRQo) of women surviving a borderline ovarian tumor (BOT) in comparison with early-stage ovarian cancer survivors treated surgically alone and with a matched cancer-free population. METHODS: Survivors of BOT and ovarian cancer were invited in two Dutch cross-sectional, population-based studies. Ovarian cancer survivors with tumor stage I who were treated surgically only were included. A random sample from the cancer-free population was matched on sex, age and education to the sample of BOT survivors. The EORTC QLQ-C30 (version 3.0) and the EORTC QLQ-OV28 were completed by the cancer-free population and the BOT and ovarian cancer survivors in study 1 and 2. The Hospital Anxiety and Depression Scale (HADS) was only completed by the cancer-free population and the survivors of BOT and ovarian cancer in study 1. BOT survivors were compared to early-stage ovarian cancer survivors and the general population using linear regression analyses and effect sizes regarding clinical importance. RESULTS: 83 BOT (42%), 88 early-stage ovarian cancer survivors (52%), and 82 women from the general population were included. In most HRQoL domains, BOT survivors were not significantly different from early-stage ovarian cancer survivors and the cancer-free population, except that BOT survivors reported significantly less insomnia than early-stage ovarian cancer survivors and more dyspnea than the cancer-free population (small clinical difference). CONCLUSION: In general, BOT survivors' HRQoL lies between the HRQoL of early-stage ovarian cancer survivors and of the cancer-free population, but clinical effect sizes between the groups were mostly only trivial.

The BDNF Val66Met polymorphism and health-related quality of life in youth with obesity.

The brain derived-neurotrophic factor (BDNF) Val66Met polymorphism causes functional changes in BDNF, and is associated with obesity and some psychiatric disorders, but its relationship to health-related quality of life (HRQoL) remains unknown. This study examined, in youth with obesity, whether carriers of the BDNF Val66met polymorphism Met-alleles (A/A or G/A) differed from noncarriers (G/G) on HRQoL. The participants were 187 adolescents with obesity. Ninety-nine youth were carriers of the homozygous Val/Val (G/G) alleles, and 88 were carriers of the Val/Met (G/A) or Met/Met (A/A) alleles. Blood samples were drawn in the morning after an overnight fast for genotyping. HRQoL was measured using the Pediatric-Quality of Life core version. Compared to carriers of the Val66Met Val (G/G) alleles, carriers of the Met-Alleles reported significantly higher physical -HRQoL (p = 0.02), school-related HRQoL, (p = 0.05), social-related HRQoL (p = 0.05), and total HRQoL (p = 0.03), and a trend for Psychosocial-HRQoL. Research is needed to confirm our findings and determine whether carriers of the BDNF Val66Met homozygous Val (G/G) alleles may be at risk of diminished HRQoL, information that can influence interventions in a high-risk population of inactive youth with obesity.

Age of onset of major depressive episode and association with lifetime psychiatric disorders, health-related quality of life and impact of gender: A cross sectional and retrospective cohort study.

OBJECTIVE: To assess the long-term impact of the age of onset (AOO) of the first major depressive episode (MDE) according to 3 age groups and considering gender. METHODS: Data were extracted from NESARC III, a representative U.S. SAMPLE: We included 8053 participants with an MDE history in a cross-sectional and retrospective cohort study. We defined 3 AOO groups: childhood-onset (< 13 yo), adolescence-onset (13-18 yo), and adult-onset (> 18 yo). We compared sociodemographic characteristics, lifetime psychiatric disorders per DSM-5 criteria, and health-related quality of life (HRQOL) in each group and performed gender-stratified analyses. RESULTS: Prevalence of childhood-onset MDE was 10.03 %, adolescence-onset was 14.12 %, and adult-onset was 75.85 %. Suicide attempts (AOR = 3.61; 95 % CI 2.90-4.50), anxiety disorders (AOR = 1.92; 95 % CI 1.62-2.27), and personality disorders (AOR = 3.08; 95 % CI 2.56-3.71) were more frequent in the childhood-onset than in the adult-onset one. Adolescence-onset group showed similar results. Physical Disability scale (p < 0.001) and Mental Disability scale (p < 0.001) were significantly lower in the childhood-onset group. Results were more nuanced in the adolescence-onset group. Women in childhood-onset and adolescence-onset groups had poorer outcomes than the adult-onset group. Differences were less pronounced in men. LIMITATIONS: Recall and classification biases inherent to survey design. CONCLUSION: Individuals, particularly women, who experienced their first MDE during childhood or adolescence exhibit higher lifetime psychiatric disorder prevalence and poorer HRQOL than those with adult-onset MDE. These findings highlight the importance of preventive measures, early diagnosis, and treatment of youth depression.

Rehabilitation Is Associated With Improvements in Post-COVID-19 Sequelae.

BACKGROUND: Post-COVID-19 syndrome has affected millions of people, with rehabilitation being at the center of non-pharmacologic care. However, numerous published studies show conflicting results due to, among other factors, considerable variation in subject characteristics. Currently, the effects of age, sex, time of implementation, and prior disease severity on the outcomes of a supervised rehabilitation program after COVID-19 remain unknown. METHODS: This was a non-randomized case-control study. Subjects with post-COVID-19 sequelae were enrolled. Among study participants, those who could attend an 8-week, supervised rehabilitation program composed the intervention group, whereas those who couldn't the control group. Measurements were collected at baseline and 8 weeks thereafter. RESULTS: Study groups (N = 119) had similar baseline measurements. Participation in rehabilitation (n = 47) was associated with clinically important improvements in the 6-min walk test (6MWT) distance, adjusted (for potential confounders) odds ratio (AOR) 4.56 (95% CI 1.95-10.66); 1-min sit-to-stand test, AOR 4.64 (1.88-11.48); Short Physical Performance Battery, AOR 7.93 (2.82-22.26); health-related quality of life (HRQOL) 5-level EuroQol-5D (Visual Analog Scale), AOR 3.12 (1.37-7.08); Montreal Cognitive Assessment, AOR 6.25 (2.16-18.04); International Physical Activity Questionnaire, AOR 3.63 (1.53-8.59); Fatigue Severity Scale, AOR 4.07 (1.51-10.98); Chalder Fatigue Scale (bimodal score), AOR 3.33 (1.45-7.67); Modified Medical Research Council dyspnea scale (mMRC), AOR 4.43 (1.83-10.74); Post-COVID-19 Functional Scale (PCFS), AOR 3.46 (1.51-7.95); and COPD Assessment Test, AOR 7.40 (2.92-18.75). Time from disease onset was marginally associated only with 6MWT distance, AOR 0.99 (0.99-1.00). Prior hospitalization was associated with clinically important improvements in the mMRC dyspnea scale, AOR 3.50 (1.06-11.51); and PCFS, AOR 3.42 (1.16-10.06). Age, sex, and ICU admission were not associated with the results of any of the aforementioned tests/grading scales. CONCLUSIONS: In this non-randomized, case-control study, post-COVID-19 rehabilitation was associated with improvements in physical function, activity, HRQOL, respiratory symptoms, fatigue, and cognitive impairment. These associations were observed independently of timing of rehabilitation, age, sex, prior hospitalization, and ICU admission.

Socioeconomic Status Plays a Moderating Role in the Association Between Multimorbidity and Health-Related Quality of Life Among Cancer Patients.

This study aimed to explore the moderating role of socioeconomic status (SES) in the association between multimorbidity and health-related quality of life (HRQOL) among cancer patients in Anhui China. A total of 560 cancer patients were recruited for the cross-section study. Socio-demographic and clinical characteristics were analyzed using descriptive statistics. Tobit regression analysis was employed to investigate the relationship between multimorbidity and HRQOL as well as to assess the moderating effect of SES. The research findings indicated that 76.61% of cancer patients experienced multimorbidity, with psychological multimorbidity being the most prevalent (45.54%), followed by physical-psychological multimorbidity (20.89%). Moreover, physical-psychological multimorbidity had the most substantial adverse effect on HRQOL (P < .001). The presence of multimorbidity was correlated with a significant decline in HRQOL, with a 17.5% (P < .001) decrease in HRQOL for each additional multimorbidity. Additionally, SES played a significant role in moderating the impact of multimorbidity on HRQOL in cancer patients. (Marginal effect = -0.022, P < .01). The high SES group exhibited a higher overall HRQOL than the low SES group (Marginal effect = 0.068, P < .001). And with the increase of multimorbidity, HRQOL in the higher SES showed a more pronounced downward trend, compared with the lower SES (ß = -.270 vs ß = -.201, P < .001). Our findings underscore the importance of preventing and managing multimorbidity in cancer patients, particularly those with low SES. Furthermore, it is essential to consider the impact of the rapid decline in HRQOL as the number of multimorbidity increases in individuals with higher SES. It is imperative to explore interdisciplinary and continuous collaborative management models.

The Association Between Personality Traits and Health-Related Quality of Life and the Mediating Role of Smoking: Nationwide Cross-Sectional Study.

Background: There are positive and negative correlations in different directions between smoking, personality traits, and health-related quality of life (HRQOL), where smoking may mask the pathway between personality traits and HRQOL. Understanding the masking pathway of smoking between personality traits and HRQOL can elucidate the mechanisms of smoking's psychosocial effects and provide new ideas for developing tobacco control strategies. Objective: The purpose of this study was to investigate the correlation between Big Five personality traits and HRQOL and whether smoking mediates the relationship between them. Methods: This was a cross-sectional study using data from 21,916 respondents from the 2022 Psychology and Behavior Investigation of Chinese Residents survey. Linear regression models were used to analyze the correlations between smoking, Big Five personality traits, and HRQOL while controlling for potential confounders. The mediating role of smoking on the association between Big Five Personality traits and HRQOL was analyzed using the Sobel-Goodman mediation test. Results: Extraversion (ß=.001; P=.04), agreeableness (ß=.003; P<.001), and neuroticism (ß=.003; P<.001) were positively correlated with HRQOL, whereas openness was negatively correlated with HRQOL (ß=-.001; P=.003). Smoking was associated with a decrease in HRQOL and mediated the positive effect of HRQOL on extraversion (z=-2.482; P=.004), agreeableness (z=-2.264; P=.02), and neuroticism (z=-3.230; P=.001). Subgroup analyses further showed that smoking mediated the effect of neuroticism on HRQOL in the population with chronic illnesses (z=-2.724; P=.006), and in the population without chronic illnesses, smoking contributed to the effect of HRQOL on extraversion (z=-2.299; P=.02), agreeableness (z=-2.382; P=.02), and neuroticism (z=-2.213; P=.03). Conclusions: This study provided evidence that there is a correlation between personality traits and HRQOL. It also found that smoking plays a role in mediating the connection between personality traits and HRQOL. The development of future tobacco control strategies should consider the unique traits of each individual's personality, highlighting the significance of extraversion, agreeableness, and neuroticism.

The association between body mass index, exercise capacity, and health-related quality of life in heart transplant recipients.

Introduction: Pre-transplant obesity and weight gain after heart transplantation are both associated with increased risk of poor clinical outcomes. We aimed to assess the association between overweight or obesity, exercise capacity, and health-related quality of life in heart transplant recipients. Methods: This study is based on baseline data from the IronIC trial, in which we randomized 102 heart transplant recipients with iron deficiency to ferric derisomaltose or placebo. We performed cardio pulmonary exercise testing in all participants. To assess quality of life, we used the SF-36v2 questionnaire, using two sum scores: the physical component summary and the mental component summary. A minimal clinically important difference was defined as ≥2 and ≥3 for the physical and the mental component summary, respectively. Results: 24/102 heart transplant recipients (24%) had a body mass index (BMI) ≥30 kg/m2. Peak oxygen consumption was 17.3 ± 4.6 ml/kg/min in the obese group vs. 24.7 ± 6.4 ml/kg/min in the group with a BMI <30 for a between-group difference of 7.4 (95% confidence interval 4.7-10.2) ml/kg/min: p < 0.001. The physical component summary score was on average 5.2 points lower in the patients with a body mass index ≥30 than in the lower weight group (p = 0.04). Conclusion: Almost a quarter of our heart transplant recipients in long-term follow-up had a BMI ≥30 kg/m2. These patients had substantially lower exercise capacity and lower quality of life in the physical domain.

Ocular Damage Index, Ocular Pain and Subjective Visual Rating in Patients with Behçet's Uveitis: A Study of Impact on Health-Related Quality of Life.

PURPOSE: The aim of our study is to assess subjective disease burden parameters (SVR and OP) as well as objective ones (BCVA and ODI) as predictors of HRQoL in Egyptian patients with BD uveitis. METHODS: Ninety-six patients with BD uveitis were recruited in this cross-sectional study from the Rheumatology Department, Cairo University Hospital. HRQoL was assessed using RAND-36 item health survey 1.0, subjective visual rating (SVR) was measured on a 6-point Likert scale. Ocular pain (OP) was rated on a numeric rating scale. The Ocular Damage Index (ODI) was calculated using the ocular domain of the BD damage index. Linear regression was performed to determine predictors of HRQoL metrics. RESULTS: SVR predicted Vitality (ß = 0.15, p = 0.004), Emotional Well-being (EW) (ß = 0.13, p = 0.005), General Health (ß = 0.18, p = 0.012) and Mental Component Summary (ß = 0.22, p = 0.002). OP predicted Social Function (ß = -3.18 p < 0.001), General Health (ß = -1.55, p = 0.004), Physical Component Summary (ß = -2.00, p = 0.007) and Mental Component Summary (ß = -1.53, p = 0.005). BCVA predicted Physical Function (ß = 31.1, p = 0.02) and Emotional Well-being (ß = 7.94, p = 0.01). ODI failed to predict any HRQoL metrics. ODI was independent predictor of legal blindness adjusted for uveitis duration and severity. Legally blind patients had worse HRQoL metrics than patients with better vision. CONCLUSION: In BD uveitis patients, subjective disease burden parameters were more informative about HRQoL metrics than objective ones. Longitudinal studies are needed to elucidate the utility of ODI as an outcome measure in BD uveitis. PRECIS: In Behcet's uveitis patients, health-related quality of life was related to visual outcome, ocular pain, and subjective visual rating. Ocular damage was an independent predictor of legal blindness, adjusted for uveitis duration and severity.

The effectiveness of health-related quality of life (HRQOL) model in people with HIV: A cross sectional study.

Background and Aims: Acquired immune deficiency syndrome (AIDS) are a chronic and disabling disease that has a significant impact on quality of life due to weakening of physical health, financial problems and social stigma. This study aims to validate the Health-related quality of life (HRQOL) model in people with human immunodeficiency viruses (HIV) in Iran. Methods: Four hundred and fifty-two people with HIV from Imam Khomeini Hospital between the age of 18 and 65 years (men: 308, women: 144) participated in the research. anonymously completed a battery of questionnaires, namely the Persian basic psychological need satisfaction and frustration scale, SF-36, PSQI and mindful attention awareness scale. The method of the present study was the structural equation model. Results: Current findings indicated there is a significant positive between mindfulness and need satisfaction, physical and mental health and, significant negative between mindfulness and quality and quantity of sleep. Mindfulness and need satisfaction are significant positive predictors of quality of life in people with HIV. Quality and quantity of sleep are significant negative predictors of quality of life in people with HIV. There is a positive significance between need satisfaction and physical and mental health but there is a negative significance between need satisfaction and quality and quantity. there is a negative significant between the quality and quantity of sleep with physical and mental health. Mindfulness facilitates the satisfaction of more psychological needs and improves the quality of sleep. The quality of sleep is a negative significant predictor for physical and mental health but the quantity of sleep is a negative significant predictor for physical health. Conclusion: The HRQOL model can explain 18% of physical health and 16% of mental health in people with HIV in Iran. The elements of this model can be useful in evaluating and treating people with HIV in the Iranian Population. They also can use the models to plan for better services.

Patient-reported outcomes in chronic hepatitis delta: An exploratory analysis of the Phase III MYR301 trial of bulevirtide.

BACKGROUND & AIMS: Once-daily treatment of chronic hepatitis delta (CHD) with bulevirtide is well tolerated and associated with significant reductions in HDV RNA in the blood and in biochemical liver disease activity. This study explored the effects of 48-week bulevirtide treatment on health-related quality of life (HRQoL) in patients with CHD. METHODS: In an open-label, randomised, Phase 3 trial, 150 patients with CHD and compensated liver disease were stratified by liver cirrhosis status and randomised 1:1:1 to no treatment (control), bulevirtide 2 mg/day, or bulevirtide 10 mg/day for 48 weeks. HRQoL was evaluated by the following patient-reported outcome (PRO) instruments at baseline, 24 weeks, and 48 weeks: EQ-5D-3L, Hepatitis Quality of Life Questionnaire (HQLQ), and Fatigue Severity Scale (FSS). RESULTS: Patient characteristics and HRQoL scores were balanced at baseline between the treatment (2 mg, n = 49; 10 mg, n = 50) and control (n = 51) groups. Patients receiving 2-mg bulevirtide reported significant improvements compared with controls on the HQLQ domains of role physical, hepatitis-specific limitations, and hepatitis-specific health distress. Numerically higher scores for general health, hepatitis-specific limitations, and hepatitis-specific health distress domains were reported by patients with cirrhosis who received bulevirtide vs control. FSS scores remained stable across treatment groups throughout. At week 48, patients in the 2-mg group showed greater mean improvement from baseline in health status compared with controls on the EQ-5D-3L visual analogue scale. CONCLUSION: PROs indicate that 48-week treatment with bulevirtide monotherapy may improve aspects of HRQoL in patients with CHD. IMPACT AND IMPLICATIONS: Bulevirtide 2 mg is the only approved treatment for patients with chronic hepatitis delta (CHD) in the EU. Patients with CHD have worse quality of life scores than those with chronic hepatitis B. Bulevirtide treatment for 48 weeks reduced HDV RNA and alanine aminotransferase levels and was well tolerated among patients with CHD. For the first time, this study shows that patients who received bulevirtide therapy for 48 weeks reported improvements in physical and hepatitis-related quality of life domains compared to those who did not receive therapy (control group). CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier, NCT03852719.

Humanistic and economic burden of atopic dermatitis in pediatric patients in Spain: a systematic review.

Atopic dermatitis (AD) is a chronic, inflammatory skin disease affecting all age groups, particularly children. This systematic review provides an overview of the humanistic and economic disease burden in the pediatric population with AD in Spain. The evidence, collected from 11 observational studies published over the past 10 years, exhibits the most common characteristics of the patients, disease burden, patient-reported outcomes, use of resources, and treatment patterns. The burden of AD extends beyond physical symptoms, with associated comorbidities such as asthma and impaired health-related quality of life and mental health disorders, particularly in severe cases. Traditional therapies, primarily topical corticosteroids, face adherence and efficacy challenges. Despite promising innovative treatments and available biological therapies, their use is still limited in the pediatric population. The findings of the present review highlight the scarce scientific evidence on the economic burden of pediatric AD, as well as the most updated humanistic evidence on this disease. At the same time, the need for individualized care and innovative therapeutic interventions to address the multifaceted challenges of pediatric AD in Spain is evident.

Family Environment, Social Support, and Health-Related Quality of Life in Adolescents Following Kidney Transplant.

BACKGROUND: Kidney transplantation is the treatment of choice for pediatric end-stage renal disease. Transplant recipients often have better neurocognitive, academic, and health-related outcomes. While there is some evidence that health-related quality of life (HRQOL) improves following kidney transplant, other studies have found adolescent transplant recipients report lower overall HRQOL than healthy peers. Current research has focused on individual-level factors affecting adjustment to organ transplant, warranting examination of HRQOL from a systems perspective. Family environment and social support contribute to a system of proximal relationships that are crucial in adolescents' development, making them important factors to study in relation to HRQOL post-transplant. METHODS: The current study utilized archival data of adolescent renal transplant patients who completed surveys about their family environment, social support, and HRQOL during routine transplant clinic visits. RESULTS: Family cohesion, as well as social support from parents, classmates, and people in school, were positively correlated with HRQOL. Social support from people in school uniquely predicted variance in HRQOL, beyond the contribution of overall family environment after controlling for demographic factors. Relative to comparable adolescent samples, transplant recipients reported more optimal overall family environment, greater social support from teachers, and lower social support from close friends. CONCLUSION: Psychosocial interventions for adolescent kidney transplant recipients may be enhanced by collaborating with school professionals and further bolstering strengths in the family environment. Kidney transplant recipients may benefit from long-term intervention, as decreased HRQOL appears to persist years post-transplant.

Measuring health related quality of life (HRQoL) in Lysosomal Storage Disorders (LSDs): a rapid scoping review of available tools and domains.

BACKGROUND: Lysosomal storage diseases (LSDs) are a group of rare inherited metabolic disorders, consisting of over 70 diseases that are characterised by lysosomal dysfunction. Due to their varied and progressive symptoms, LSDs have a continual impact on patients' health-related quality of life (HRQoL). Several recently published studies have provided insight into the HRQoL of individuals with LSDs. However, it is challenging to meaningfully synthesise this evidence, since studies often focus upon a particular type of LSD and / or utilise different self-report questionnaires or patient-reported outcome measures (PROMs) to assess HRQoL. AIMS: The aim of this study was to review the published literature in LSDs, to identify the PROMs which have been used to assess HRQoL and generate a conceptual map of HRQoL domains measured in individuals diagnosed with LSDs. METHODS: Three electronic databases were searched in March 2022. Primary studies of any design which utilised multi-item PROMs to assess at least one aspect of HRQoL in individuals with LSDs since 2017 were identified. Data were extracted to assess both the characteristics of each study and of the PROMs utilised within each study. The extraction of HRQoL domains and synthesis were informed by an a priori framework, inductively modified to reflect data emerging from the identified literature. Selection and extraction was undertaken independently by two reviewers; discrepancies were ratified by a third reviewer. RESULTS: Sixty nine studies were identified which were published 2017-2022, with a combined total of 52 PROMs (71 variants) used to assess HRQoL in individuals with LSDs. The final extracted HRQoL framework included 7 domains (Activities; Physical sensations; Autonomy; Cognition; Feelings and emotions; Self-identity; Relationships), characterised by 37 sub-domains. CONCLUSIONS: This review highlights the breadth and variety of HRQoL domains assessed in individuals with LSDs, across three broad domains of physical, psychological and social functioning. The resultant framework and mapped PROMs will aid researchers and clinicians in the selection of PROMs to assess aspects of HRQoL in people living with LSDs, based on their conceptual coverage.

Factors associated with patient activation among patients with diabetes on hemodialysis: a multicenter cross-sectional study from a developing country.

BACKGROUND: Diabetes mellitus (DM) is a major public health concern with considerable morbidity and mortality. DM affects patients' quality of life and can lead to multiple complications, including chronic kidney disease (CKD) and the need for dialysis. Higher patient activation can improve health outcomes in hemodialysis patients with DM. This study aimed to explore the factors associated with higher patient activation and health-related quality of life (HRQoL) among hemodialysis patients with DM. METHODS: This was a cross-sectional, questionnaire-based study conducted on hemodialysis patients with DM in Palestine. The quota sampling method was utilized to draw samples from six dialysis centers. The questionnaire consists of three sections. The first section includes demographic, socioeconomic and clinical questions. The second section utilizes the patient activation measure-13 (PAM-13) to measure patient activation, while the third section assesses HRQoL using the EQ-5D-5 L tool and the visual analog scale (VAS). Mann‒Whitney and Kruskal‒Wallis tests were employed to examine the relationships between variables at the bivariate level, and multiple regression analysis was employed at the multivariate level. RESULTS: Of the 200 patients who were approached, 158 were included. The median PAM, EQ-5D index, and VAS score were low at 51.0, 0.58, and 60.0, respectively. A higher PAM score was independently associated with a higher household income level and taking medications independently. A higher EQ-5D index was associated with taking more than eight medications, taking medications independently, living with fewer than three comorbid conditions, and having a higher PAM. A higher VAS score was associated with being married, and receiving less than 3.5 hours of hemodialysis. CONCLUSIONS: A higher patient activation level was associated with a higher income level and independence in taking medications. Interventions designed to improve patient activation, such as medication management programs, should address these factors among the target population. Longitudinal studies are needed to assess the time effect and direction of causation between health status and patient activation.

The impact of preoperative 5-alpha reductase inhibitors on functional outcomes and health-related quality of life following radical prostatectomy - A propensity score matched longitudinal study.

OBJECTIVES: While the impact of treatment with 5-alpha Reductase Inhibitors (5-ARI) on the risk of cancer-related mortality in men with prostate cancer (PC) has been extensively studied, little is known about the impact of preoperative 5-ARI use on patient-reported outcomes (PROs) following radical prostatectomy (RP). METHODS: Within our prospectively maintained institutional database of 5899 patients treated with RP for PC (2008- 2021), 99 patients with preoperative 5-ARI therapy were identified. A 1:4 propensity-score matched analysis of 442 men (n = 90 5-ARI, n = 352 no 5-ARI) was conducted. Primary endpoint was continence recovery using daily pad usage and ICIQ-SF. Health-related quality of life (HRQOL) was assessed using the validated EORTC QLQ-C30 and PR25 questionnaires. Multivariable Cox-regression-models tested the effect of preoperative 5-ARI treatment on continence-recovery (p < 0.05). RESULTS: Patients were followed up perioperatively, followed by annual assessments up to 60mo postoperatively. Preoperative mean ICIQ-SF score (2.2 vs. 0.9) was significantly higher in the 5-ARI cohort (p = 0.006). 24mo postoperatively, 68.6% (no 5-ARI) vs. 55.7% (5-ARI) had full continence recovery (p = 0.002). Multivariable Cox regression analysis, revealed preoperative 5-ARI treatment as an independent predictor for impaired continence recovery (HR 0.50, 95% CI 0.27-0.94, p = 0.03) In line, general HRQOL was significantly higher for patients without 5-ARI only up to 24mo postoperatively (70.6 vs. 61.2, p = 0.045). There was no significant impact of preoperative 5-ARI treatment on erectile function, biochemical recurrence-free survival and metastasis-free survival. CONCLUSIONS: Pre-RP 5-ARI treatment was associated with impaired continence outcomes starting 24mo postoperatively, suggesting that preoperative 5-ARI treatment can impair the long-term urinary function recovery following RP.