Mean Health-related Quality Of Life Research Articles

Health-related quality of life (HRQoL) loss associated with self-perceived anxiety/depression in seropositive rheumatoid arthritis.

To analyze the HRQoL loss associated with self-perceived anxiety/depression in patients with seropositive rheumatoid arthritis (RA). This secondary data analysis is based on a registry-based retrospective follow-up study of patients with seropositive RA treated between August 2014 and January 2023 in ARTMEDICA, Colombia. HRQoL loss and self-perceived anxiety/depression were defined as outcomes. Disease activity (DAS-28) and other patient data were also gathered. Statistical analyses were performed using the ordinal logistic and generalized linear regression models. A total of 3579 patients with a mean follow-up of 2.9 (SD 2.4) years, 85.6% women with a median age at diagnosis of 48.1 (IQR 37.8-57.5) years, and a median of 6.5 (IQR 1.9-14.7) years living with RA were included. At program admission, the median DAS-28 score was 2.8 (IQR 2.1-4.2), and 6.6% of patients reported extreme anxiety/depression. The average HRQoL loss was 3.4months per year lived with seropositive AR. Among patients with no pain or discomfort, moderate and extreme anxiety/depression were associated with mean HRQoL losses of 2.2 (95% CI - 2.3 to - 2.2) and 4.1 (95% CI - 4.3 to - 3.8) months. In patients with extreme pain/discomfort, these estimations were 0.8 (95% CI - 0.9 to - 0.7) and 1.9 (95% CI - 2.1 to - 1.7) months, respectively. Our study adds to the available body of evidence by clarifying the differential impact of anxiety/depression on HRQoL, depending on the severity of pain. These findings highlight the importance of strengthening mental health care and psychological well-being interventions for patients with RA, regardless of pain or disease activity. Key Points • The average HRQoL loss was 3.4months per year lived with seropositive AR. • Pain/discomfort rather than disease activity explained the severity of anxiety/depression as well as its associated HRQoL loss. • For patients with extreme pain/discomfort and anxiety/depression, the average HRQoL loss was 8.1months per year lived with the disease compared to 0.4months for patients without those impacts.

Quality of life and social reinsertion of patients on maintenance haemodialysis in four government funded hospitals in Cameroon.

Reduced quality of life is associated with shorter survival in chronic illnesses. However, the health-related quality of life (HRQOL) and social reinsertion of patients on maintenance haemodialysis is much more underappreciated in resource-limited countries such as Cameroon. A hospital-based cross-sectional study was carried out from February 22nd to May 20th, 2022, in 4 government-funded haemodialysis centres in three randomly selected regions of Cameroon. Patients received twice-weekly dialysis sessions. Social reinsertion and HRQOL were assessed using a structured questionnaire and the kidney disease quality of life instrument (KDQOL-36™). HRQOL scores < 50 were categorized as low, while scores > 50 reflected better HRQOL. Data were analysed using the software statistical package for Social Sciences version 25.0. Statistical significance was set at a p value < 0.05. The study included 434 patients. The mean age was 48.33 (13.55) years, 65.7% (285/434) were male, 62.3% (269/434) had no monthly income, and the mean dialysis vintage was 3.74 (3.83) years. The mean HRQOL score was 44.34 (9.77), and 76.2% (325/434) had HRQOL scores < 50). Overall HRQOL was associated with older age (aOR: 2.344, CI 1.089-5.04). After the initiation of maintenance haemodialysis, 67.1% (49/73) of students dropped out of school. The main reason for school absenteeism and unemployment was physical insufficiency, with 82.4% (19/24) and 52.4% (75/144), respectively. There were no promotions or marriages after initiation; 51% (221/434) of relationships with relatives and friends were affected negatively, while 83.3% (66/79) of those of marriageable ages could not find suitors. The social participation score was poor in 61.5% (267/434) of participants. There was an association between low QOL and social participation (p = 0.009). The HRQOL of patients on maintenance haemodialysis is greatly reduced, especially their physical health status. Older age was a determinant of low QOL. Additionally, social reinsertion remains poor due to adverse changes that occur to these patients and their families after dialysis initiation. Not applicable.

Exploring the quality of life and comorbidity impact among patients with systemic lupus erythematosus in Saudi Arabia.

To explore the quality of life (QoL) of patients with systemic lupus erythematosus (SLE) and the factors affecting it. In this cross-sectional study, 269 patients diagnosed with SLE from multiple centers across different regions of Saudi Arabia were included. We used the LupusPRO1.8 QoL assessment tool. Additionally, comprehensive data regarding patient demographics, disease features, and associated comorbidities were collected for analysis. The overall mean QoL score was 57.71±11.97, with the median value (interquartile range [IQR]) of 56.82 (48.62-66.65). The mean health-related QoL (HRQoL) score was 57.09±18.81, with the median (IQR) of 55.63 (44.04-70.19). Among HRQoL domains, the emotional health domain had the lowest score (44.67±30.00, median: 41.7 [16.7-66.7]). The second and third lowest scores were for fatigue (46.24±29.18, median: 43.8 [25-68.8]) and pain (48.65±30.38, median: 50 [25-71.9]). Regarding non-HRQoL, the mean score was 58.32±15.52 and median (IQR) score was 58.85 (48.18-70.83). The desires-goals domain had the lowest score (45.79±31.41), with the median value of 43.8 (21.9-68.8). The presence of comorbidities was the only factor affecting the QoL of patients with SLE. Our findings indicate that patients with SLE have worse overall QoL, which includes both HRQoL and non-HRQoL domains. Furthermore, the presence of comorbidities was the only factor that influenced the QoL of lupus patients.

Symptom perception, health-related quality of life and predicted survival in heart failure patients

BackgroundHeart failure (HF) is a chronic and progressive condition that significantly impacts patients’ lives, necessitating a comprehensive understanding of the factors influencing their health outcomes. Among these factors, symptom perception, health-related quality of life (HRQoL), and predicted survival are paramount. This study aimed to assess symptom perception, HRQoL and predictive survival among HF patients. MethodsA baseline analysis was carried out in a randomized controlled trial involving patients with HF. Heart Failure Somatic Perception Scale to assess symptom perception, Kansas City Cardiomyopathy Questionnaire-12 to assess HRQoL and Seattle Heart Failure Model to assess predicted survival were used. ResultsAmong the 160 patients, 62.5 % were between 36 and 59 years of age and were married (88 %). Hypertension and diabetes were reported in 104 and 94 participants respectively, and among them, 65 participants had both hypertension and diabetes. The mean left ventricular ejection fraction was 33(%), and 56.5 % of the participants were in New York Heart Association functional class III and IV. The average symptom perception score was 27.4 ± 18.3, while the mean HRQoL score was 37.2 ± 14.2. The predicted one-year survival score was 80 ± 11.5, and the predicted five-year survival score was 38.5 ± 21.3. HRQoL showed a significant negative correlation with symptom perception (r = −0.75; p = 0.001) and a positive correlation with one-year survival (r = 0.53; p = 0.001), and five-year survival (r = 0.56; p = 0.001). ConclusionPatients with HF experience persistent symptoms and poor HRQoL. Symptom severity decreases HRQoL. Understanding HRQoL and symptom perception is crucial for developing effective self-care interventions, which are vital for improving patient outcomes and managing HF effectively.

Health-Related Quality of Life and Economic Analysis of Olanzapine Versus Aprepitant in Preventing Chemotherapy-Induced Nausea and Vomiting in Patients Receiving Highly Emetogenic Chemotherapy in Malaysia

ObjectivesOlanzapine has been shown to be effective in preventing chemotherapy-induced nausea and vomiting (CINV) after highly emetogenic chemotherapy (HEC); however, there is limited work on the impact of CINV on health-related quality of life (HRQoL) and the comparative cost-effectiveness of CINV prophylaxis in the Malaysian context. Therefore, this study was conducted to determine the HRQoL using EQ-5D-5L and the cost-effectiveness of olanzapine compared with aprepitant for CINV prophylaxis in Malaysia using data from a local study. MethodsFifty-nine chemo-naive patients receiving either olanzapine or aprepitant were randomly recruited and completed the EQ-5D-5L before and day 5 after HEC. HRQoL utility scores were analyzed according to the Malaysian valuation set. The economic evaluation was conducted from a healthcare payer perspective with a 5-day time horizon. Quality-adjusted life days (QALD) and the rate of successfully treated patients were used to measure health effects. The incremental cost-effectiveness ratio is assessed as the mean difference between groups’ costs per mean difference in health effects. A one-way sensitivity analysis was performed to assess variations that might affect outcomes. ResultsAprepitant and olanzapine arms’ patients had comparable baseline mean HRQoL utility scores of 0.920 (SD = 0.097) and 0.930 (SD = 0.117), respectively; however, on day 5, a significant difference (P value = .006) was observed with mean score of 0.778 (SD = 0.168) for aprepitant and 0.889 (SD = 0.133) for olanzapine. The cost per successfully treated patient in the aprepitant arm was 60 times greater than in the olanzapine arm (Malaysian Ringgit [MYR] 927 vs MYR 14.83). Likewise, the cost per QALD gain in the aprepitant arm was 36 times higher than in the olanzapine arm (MYR 57.05 vs MYR 1.57). Incremental cost-effectiveness ratio of MYR −937.00 (USD −200.98) per successfully treated patient and MYR −391.84 (USD −85.43) per QALD gained for olanzapine compared with the aprepitant-based regimen. ConclusionsAn olanzapine-based regimen is a cost-effective therapeutic substitution in patients receiving HEC in Malaysia.

ETMR-09. HEALTH-RELATED QUALITY OF LIFE OF CHILDREN, ADOLESCENTS AND ADULTS AFTER DIAGNOSIS OF CHILDHOOD-ONSET MENINGIOMA

Abstract BACKGROUND Meningiomas are rare intracranial tumors in childhood. Childhood-onset meningiomas differ from their adult counterparts in terms of frequency, molecular features and clinical presentation. There is limited data on health-related quality of life (HRQoL) of pediatric meningioma patients. The aim of this study was to analyze the HRQoL of pediatric or adult patients after completion of treatment for childhood-onset meningioma. Further, the influence of disease-specific characteristics on HRQoL, fatigue or functional capacity was analyzed. METHODS In this cross-sectional study, the HRQoL of 8 pediatric and 27 adult meningioma patients from the clinical trials HIT-ENDO, KRANIOPHARYNGEOM 2000/2007 and KRANIOPHARYNGEOM Registry 2019 was assessed. The validated questionnaires EQ-5D-Y, EQ-5D-3L, PedsQL Generic Core Scale, EORTC QLQ-C30 and QLQ-BN20 were used. Patients’ fatigue and functional capacity were scored using the EORTC QLQ-C30, the PedsQL Multidimensional Fatigue Scale and the FMH questionnaire. Exploratory data analysis was performed using univariate, bivariate and multivariate analyses (α=0.05). RESULTS The HRQoL was assessed in median 10 (IQR: 5-17) years after diagnosis. The mean HRQoL value was 86 (IQR: 79-92) for pediatric and 75 (IQR: 67-92) for adult patients using the PedsQL Generic Core Scale or EORTC QLQ-C30 questionnaire, respectively. Most limitations were reported in emotional function and fatigue. The median functional capacity of patients was at the 90th (IQR: 65-90) percentile. HRQoL was lower in adults with neurofibromatosis type 2 or at older age (p=0.009) and higher HRQoL after progressive disease. Age at diagnosis, WHO grade, residual tumor, use of radiotherapy, tumor location, tumor entity (meningioma vs. craniopharyngioma), degree of disability, or time since diagnosis did not affect HRQoL in adults. CONCLUSION The median HRQoL of childhood-onset meningioma patients indicates that it is comparable to the healthy normal population. Nevertheless, HRQoL is a construct that can be influenced in many ways. Further research on HRQoL is warranted.

Association of optimism and social support with health-related quality of life among Australian women cancer survivors - A cohort study.

Large-scale studies investigating health-related quality of life (HRQL) in cancer survivors are limited. This study aims to investigate HRQL and its relation to optimism and social support among Australian women following a cancer diagnosis. Data were from the Australian Longitudinal Study on Women's Health, a large cohort study (n=14,715; born 1946-51), with 1428 incident cancer cases ascertained 1996-2017 via linkage to the Australian Cancer Database. HRQL was measured using the Short Form-36 (median 1.7 years post-cancer-diagnosis). Multivariable linear regression was performed on each HRQL domain, separately for all cancers combined, major cancer sites, and cancer-free peers. Higher optimism and social support were significantly associated with better HRQL across various domains in women with and without a cancer diagnosis (p<0.05). Mean HRQL scores across all domains for all cancer sites were significantly higher among optimistic versus not optimistic women with cancer (p<0.05). Adjusting for sociodemographic and other health conditions, lower optimism was associated with reduced scores across all domains, with greater reductions in mental health (adjusted mean difference (AMD)=-11.54, p<0.01) followed by general health (AMD=-11.08, p<0.01). Social support was less consistently related to HRQL scores, and following adjustment was only significantly associated with social functioning (AMD=-7.22, p<0.01) and mental health (AMD=-6.34, p<0.01). Our findings highlight a strong connection between optimism, social support, and HRQL among cancer survivors. Providing psychosocial support and addressing behavioral and socioeconomic factors and other health conditions associated with optimism and social support may improve HRQL.

Health-related quality of life among people with diabetes: A cross-sectional study in Hail region, Saudi Arabia ​.

Diabetes Mellitus is a serious and expanding health problem, together with the issues of health- related quality of life (HRQoL). This further puts pressure on the government to allocate more funds for public healthcare. This study was devised to evaluate the health-related quality of life of people living with diabetes in Hail region of Saudi Arabia. This cross-sectional research was carried out at eight locations in the Hail region of Saudi Arabia between 21st March-20th May 2022 using the adapted version of the Euro QoL-5 dimension (EQ-5D-3L) questionnaire. A multistage random sample approach was used to choose the diabetes clinics, and data collectors approached the participants in the waiting areas to collect the information. The data were analyzed using logistic regression analysis, Mann-Whitney test, and Kruskal-Wallis tests in IBM SPSS statistics 21.0. The mean HRQoL score was 0.71±0.21 with a visual analog score of 68.4±16.2. Despite having much higher levels of quality of life in terms of self-care (85.8%), regular activity (73.8%) and anxiety (71.8%), nearly one half of the people reported moderate pain or discomfort, and more than one third reported having moderate mobility issues. In general, the quality of life for women was poorer than for men. Individuals with diabetes who were unmarried, young, educated, financially secure, and taking only oral medication had much improved HRQoL. The Euro QoL of people with diabetes patients were significantly influenced by gender, marital status, age, education, employment and treatment modality (p-values < 0.05), whereas only treatment modality had a significant impact on the patients' visual analogue measures (p-values < 0.05). The HRQoL of people with diabetes in Hail region was moderate in general, with pain and mobility issues being particularly prevalent. Gender, marital status, age, education, employment and type of medication therapy are significant predictors of HRQoL of patients with diabetes. Hence, planning and programs to enhance the HRQoL of people with diabetes, especially women is recommended.

The association between body mass index and health-related quality of life in the 2017 and 2018 health survey of England data: A cross-sectional observational analysis.

To provide an updated estimate of the association between body mass index (BMI) and health-related quality of life (HRQoL) among the general population in England and to identify population subgroups with the highest potential utility gains from obesity interventions. The sample included 12 158 adults with valid HRQoL and BMI data from the 2017 and 2018 Health Survey for England. Robust standard error linear regression, controlling for demographic and socioeconomic characteristics, lifestyle behaviours and obesity-related comorbidities, was used for the baseline analysis. Robustness checks assessed the impact of (a) estimator selection; (b) model specifications; (c) statistical outliers at high BMI; (d) potential BMI measurement error; and (e) data pooling. The study found a significant association between HRQoL and BMI, which exhibited an inverted U-shaped relationship. The mean HRQoL peaked at 25.7 kg/m2 in men and 22.6 kg/m2 in women and was reduced in the underweight, overweight and obesity BMI ranges. Sensitivity analyses reported similar coefficients, suggesting a robust model specification. Reduced HRQoL beyond optimal BMI underlines the importance of maintaining a normal BMI range for overall health. The rising prevalence of class III obesity is a major public health concern given its disproportionate impact on health, health care utilization and costs. Obesity management is key to preventing the reduction in HRQoL associated with obesity-related comorbidities, and this analysis supports the development of targeted policies and population health initiatives for people with class III obesity.

Self-Reported Everyday Functioning After COVID-19 Infection

Changes in everyday functioning are crucial to assessing the long-term impact of COVID-19 infection. To examine the impact of COVID-19 infection on everyday functioning 18 months after infection among veterans with and without histories of COVID-19 infection. This cohort study used data from the US Veterans Affairs (VA) and included 186 veterans who had COVID-19 between October 2020 and April 2021 (ie, COVID-19 cohort) and 186 matched comparators who did not have documented COVID-19 infections (ie, control cohort). This match balanced the risk of COVID-19 based on 39 variables measured in the 24 months before infection or match, using principles of target trial emulation. Data were analyzed from December 2022 to December 2023. First documented COVID-19. The differences in self-reported everyday functioning 18 months after COVID-19 infection were estimated and compared with their matched comparators. Within-matched pair logistic and linear regressions assessed differences in outcomes and were weighted to account for sampling and nonresponse. Among the 186 matched pairs of participants, their weighted mean age was 60.4 (95% CI, 57.5 to 63.2) years among veterans in the COVID-19 cohort (weighted sample, 91 459 of 101 133 [90.4%] male; 30 611 [30.3%] Black or African American veterans; 65 196 [64.4%] White veterans) and 61.1 (95% CI, 57.8 to 64.4) years among their comparators in the control cohort (91 459 [90.4%] male; 24 576 [24.3%] Black or African American veterans; 70 157 [69.4%] White veterans). A high proportion of veterans in the COVID-19 cohort (weighted percentage, 44.9% [95% CI, 34.2% to 56.2%]) reported that they could do less than what they felt they could do at the beginning of 2020 compared with the control cohort (weighted percentage, 35.3%; [95% CI, 25.6% to 46.4%]; within-matched pair adjusted odds ratio [OR], 1.52 [95% CI, 0.79 to 2.91]). There was no association of documented COVID-19 infection with fatigue, substantial pain, limitations in either activities of daily living and instrumental activities of daily living, severely curtailed life-space mobility, employment, or mean health-related quality of life on a utility scale. In this cohort study of veterans with and without documented COVID-19, many reported a substantial loss of everyday functioning during the pandemic regardless of whether or not they had a documented infection with COVID-19. Future work with larger samples is needed to validate the estimated associations.

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.

Enhanced External Counterpulsation for Management of Postacute Sequelae of SARS-CoV-2 Associated Microvascular Angina and Fatigue: An Interventional Pilot Study.

Postacute sequelae of SARS-CoV-2 infection (PASC) are a novel clinical syndrome characterized in part by endothelial dysfunction. Enhanced external counterpulsation (EECP) produces pulsatile shear stress, which has been associated with improvements in systemic endothelial function. To explore the effects of EECP on symptom burden, physical capacity, mental health, and health-related quality of life (HRQoL) in patients with PASC-associated angina and microvascular dysfunction (MVD). An interventional pilot study was performed, including 10 patients (male = 5, mean age 50.3 years) recruited from a tertiary specialized PASC clinic. Patients with angina and MVD, defined as index of microcirculatory resistance (IMR) ≥25 and/or diagnosed through stress perfusion cardiac magnetic resonance imaging, were included. Patients underwent one modified EECP course (15 one-hour sessions over five weeks). Symptom burden, six-minute walk test, and validated generic self-reported instruments for measuring psychological distress and HRQoL were assessed before and one month after treatment. At baseline, most commonly reported PASC symptoms were angina (100%), fatigue (80%), and dyspnea (80%). Other symptoms included palpitations (50%), concentration impairment (50%), muscle pain (30%), and brain fog (30%). Mean IMR was 63.6. After EECP, 6MWD increased (mean 29.5 m, median 21 m) and angina and fatigue improved. Mean depression scores showed reduced symptoms (-0.8). Mean HRQoL scores improved in seven out of eight subscales (+0.2 to 10.5). Patients with PASC-associated angina and evidence of MVD experienced subjective and objective benefits from EECP. The treatment was well-tolerated. These findings warrant controlled studies in a larger cohort.

Healthy Lifestyle and Quality of Life in Post-Operative Colorectal Cancer Patients: A Five-Month Observational Study.

Health-related quality of life (HRQOL) is an important indicator of treatment effectiveness. An unhealthy lifestyle can have a negative impact on quality of life. This study aimed to investigate changes in health-related lifestyle over time after surgery for colorectal cancer and their impact on HRQOL. Healthy lifestyle habits examined in this study included physical activity, smoking, alcohol consumption, fruit and vegetable intake, sleep, and obesity levels. An observational study design was used. A total of 75 post-operative colorectal cancer patients were recruited from two medical centers in Taiwan. Data were collected through structured questionnaires. Mean HRQOL scores at 1, 3, and 5 months after discharge were 102.5 (SD = 18.8), 102.9 (SD = 20.1), and 103.0 (SD = 18.9), respectively. A generalized estimating equation analysis showed that alcohol consumption (p = 0.009), fruit and vegetable intake (p = 0.020), physical activity (p = 0.023), sleep quality (p < 0.001), and obesity (p = 0.035) were important predictors of post-operative quality of life in patients with colorectal cancer. The impact of smoking on HRQOL did not reach statistical significance. Colorectal cancer patients tend to have better HRQOL after surgery if they stay physically active, eat enough fruits and vegetables, and sleep well.

Should we correct hypospadias during childhood? Decision Regret And QUality of Life Assessment (DRAQULA) study

To evaluate patient's satisfaction, Decision Regret And QUality of Life Assessment (DRAQULA) among adolescents (older than 15 years) and adults after hypospadias surgery in childhood. 234 Patients operated on hypospadias as children in our center and their parents were contacted after they reached the age of 15 years to complete a questionnaire survey to assess satisfaction with the operative result, the regret with the operative decision and the health related quality of life (HRQOL). The survey is based on the Decision Regret Scale available in the literature with a score of 100 meaning maximum dissatisfaction or regret, and on the Kidscreen10 index. Satisfaction was measured on a scale from 1 to 5 with 5 signifying full satisfaction. 81 of 234 patients from 15 to 43 years (mean age 19.7 years) completed the survey (34.6%). 44 Patients had distal, and 17 proximal hypospadias and the remaining 20 patients could not remember the type of hypospadias they had. The patient's satisfaction with the operative result was 5 (full satisfaction) in 74.1%, 4 in 18.5%, 3 in 6.2% and 2 in 1.2% (mean satisfaction score 4.7 of 5). Regarding decision regret among patients, 64/81 patients (79.0%) had no decision regret. Only 14.8% reported mild and 6.2% moderate decisional regret (mean decisional regret score 4.8). 71 of 234 parents answered the parents' questionnaire (30.0%). Fifty-eight (81.7%) had no decision regret. 13 parents (18.3%) had decision regret; 10 parents (14.1%) reported mild, 2 parents (2.8%) moderate, and only one parent (1.4%) reported strong decisional regret. The mean HRQOL T-score was 55.9 (SD 10, control Group of adolescent males from 12 to 18 years.) and thus corresponded to the average of the reference normal population. In this study, only 19.7% had decision regret as compared to 50-65% reported in literature. The decision regret scale of O'Connor needs to be revalidated as even candidates who approve of the decision of early surgery have a score less than 25 and considered to have decision regret. The results of the survey showed that 90% of the patients were satisfied with early hypospadias surgery with average HRQOL and low level of decisional regret in patients as well as parents. The findings support the current practice of operating hypospadias in early childhood.

Cluster-Based Multinomial Logistic Regression Model for Health-Related Quality of Life Among People Living with HIV in Brazil.

Improvement in treatment options has increased the survival of people living with HIV (PLHIV). Thus, we evaluated the factors associated with better health-related quality of life (HRQoL) among PLHIV in Brazil. This was a cross-sectional study carried out among 349 PLHIV. Data were collected using an interview-based questionnaire, and HRQoL was assessed by the Brazilian version of the WHOQOL HIV BREF instrument. We used non-hierarchical cluster analysis (K-means) to compile the WHOQOL HIV BREF's overall and domain scores into a unique more multidimensional measure for HRQoL consisting of three clusters: poor, fair and good; associations with clusters of better HRQoL were assessed using multinomial logistic regression models. The mean and median overall HRQoL scores were 15.13 (SD = 3.39) and 16, respectively. The reliability and validity of the Brazilian version of the WHOQOL HIV BREF instrument was confirmed among PLHIV in a non-metropolitan, medium-sized municipality of Brazil, which reaffirmed the cross-cultural validity of this instrument. The factors male sex; heterosexual and asexual orientations; higher individual income; undetectable viral load; absence of any comorbidity and presence of an infectious or a chronic comorbidity, with mental illness as the reference; and never having consumed illegal substances were independently associated with good HRQoL. Thus, the compilation of the WHOQOL HIV BREF's overall and domain scores into a unique multidimensional measure for HRQoL, which this study proposed for the first time, may facilitate more robust interpretations and models of predictors. These differentials could simplify HRQoL as an indicator of health and wellbeing to be routinely used as a key outcome in the clinical management of patients and in the global monitoring of health system responses to HIV.

Investigating the Relationship between Endogenous Factor VIII Levels and Annual Bleed Rates and Health-Related Quality of Life in Patients with Hemophilia a Not Treated with Factor VIII Prophylaxis

Background Haemophilia A (HA) is a rare genetic disorder characterized by excessive bleeding caused by dysfunctional or absent clotting factor VIII (FVIII). Levels of FVIII determine severity of HA; 5% to &amp;lt;40% of normal FVIII levels is classified as mild disease, 1-5% is moderate, and &amp;lt;1% is severe. Current standard of care for severe hemophilia A is prophylaxis, with FVIII replacement keeping levels above 3-5% to prevent bleeding episodes. Less severe patients, or patients who opt-out of prophylaxis, may be treated on-demand. In patients not on prophylaxis, factor levels (FLs) are considered endogenous. Aims The purpose of the study was to explore the relationship between endogenous FLs and ABR; and FLs and Health-Related Quality of Life (HRQoL), in patients across all severities treated on-demand. Methods The analysis was conducted using the CHESS II dataset - a retrospective, cross-sectional study conducted in Denmark, France, Germany, Italy, The Netherlands, Romania, Spain, and The United Kingdom [2018-19]. Physicians completed questionnaires about their patients, and patients completed HRQoL questionnaires. The inclusion criteria for this analysis was restricted to adult male patients without inhibitors or treated with prophylaxis. ABR was defined as the total number of bleeds recorded in the patient's medical records within the previous 12 months from patient enrolment. HRQoL was measured using the EQ5D-5L and valued using UK preference weights for comparison. Spearman's correlation was used to assess the relationships between FLs and both ABR and HRQoL. Regression models were used to estimate the relationships controlling for key covariates, including age, body mass index, and blood-borne viruses (HIV, Hepatitis B and C). Results A total of 403 patients from six countries (Italy, France, Germany, Spain, Romania, and United Kingdom) were included. Patients with mild, moderate, or severe HA accounted for 30%, 33%, and 37% of the sample, respectively. The mean age was 37.2 years with mean BMI 24.5 kg/m 2. The mean baseline FLs of all patients in the sample was 7 IU/dL (SD, 10.2) overall and 8.1 IU/dL (SD, 11.3) for the subset with HRQoL data (N = 167). The mean ABR was 2.3 bleeds/year (SD, 2.64) and the mean HRQoL score (n = 167) was 0.777 (SD, 0.197). Correlation analyses identified statistically significant, non-linear relationships between FLs and ABR, and FLs and HRQoL. The model showed lower ABRs in patients with higher endogenous FLs (figure 1). The regression suggests that on average, for every 1% higher endogenous FLs, ABR is 3.9% [95%CI: 2.8, 5.0%] (0.09 units) lower. In other words, an increase in FLs of 11% is associated with a reduction in ABR of approximately 1 bleed per year (figure 1). For HRQoL and FLs, the regression analyses show higher HRQoL with higher FLs (figure 2). The model showed every 1% higher FLs was associated with 0.0054 [95%CI: 0.003, 0.008] points higher EQ5D scores on average; therefore, an increase in FLs of 13% could achieve a minimal clinically important difference in HRQoL. Given non-linearity of the relationship, larger gains in HRQoL may come from raising FLs in more severe patients. Conclusion The results of this study reflect the spectrum of patients with HA treated on-demand in Europe. Due to the selection of patients not treated with prophylaxis, some of whom may have lower bleeding phenotypes, bleed rates and HRQoL are likely underestimated. The analyses show patients with higher endogenous FLs may experience fewer bleeds and better HRQoL than patients with lower FLs. This relationship may be maintained when considering FLs during prophylactic treatment. Higher FLs are not only related to clinical benefits, but also humanistic outcomes.

Effects of Idecabtagene Vicleucel (Ide-Cel) Versus Standard Regimens on Health-Related Quality of Life (HRQoL) in Patients with Triple-Class-Exposed (TCE) Relapsed/Refractory Multiple Myeloma (RRMM) Who Received at Least 3 Lines of Prior Antimyeloma Regimens in the KarMMa-3 Phase 3 Randomized Controlled Trial

Introduction: Patients with TCE RRMM have a high disease burden and often report worsening HRQoL with additional lines of therapy. The single-arm, phase 2 KarMMa study demonstrated that ide-cel, a B-cell maturation antigen (BCMA)-directed chimeric antigen receptor T cell therapy, improved HRQoL from baseline in patients with TCE RRMM who had received ≥ 3 prior regimens (Delforge M, et al. Blood Adv 2022;6:1309-1318). Furthermore, in the phase 3 KarMMa-3 clinical trial (NCT03651128), ide-cel significantly improved progression-free survival and response compared with standard regimens in patients with TCE RRMM who had received 2-4 prior regimens (Rodriguez-Otero P, et al. N Engl J Med 2023;388:1002-1014). Here we assessed the comparative effects of ide-cel versus standard regimens on HRQoL in patients with TCE RRMM who had received 3-4 prior regimens including an immunomodulatory agent, a proteasome inhibitor, and daratumumab (an anti-CD38 monoclonal antibody) using data from the KarMMa-3 study. Methods: Patient-reported outcomes (PROs) were assessed by the European Organization for Research and Treatment of Cancer (EORTC) Quality-of-Life Questionnaire-Core 30 (QLQ-C30), EORTC Quality of Life Questionnaire Multiple Myeloma Module (QLQ-MY20), and EQ-5D-5L. The pre-specified primary domains of interest included EORTC QLQ-C30 global health status/QoL, physical functioning, cognitive functioning, fatigue, and pain; EORTC QLQ-MY20 disease symptoms and side effects of treatment; and the EQ-5D-5L visual analog scale (EQ-5D VAS). PROs were collected at screening (baseline), the day of ide-cel infusion (ide-cel) or first treatment dose (standard regimens), monthly from 2 to 28 months, and thereafter every 3 months. Comparisons were performed on least squares (LS) mean changes from baseline through 28 months between arms using constrained longitudinal data analysis (cLDA). Effect size was estimated by Hedges' g. The comparative effects of ide-cel versus standard regimens on time to confirmed improvement and time to confirmed deterioration (defined by prespecified change thresholds) were assessed via stratified Cox proportional hazards regression analyses. All P values are nominal and not adjusted for multiple testing. Statistical significance was set at P &amp;lt; 0.05. Results: Baseline characteristics were well balanced among the patients in the ide-cel arm (n = 167) and the standard regimen arm (n = 93), with a median age of 63 years and a median time of 4.7 years from RRMM diagnosis to study screening. Completion rates of HRQoL assessments were high over time for most visits (&amp;gt; 75%). At baseline, mean HRQoL domain scores were similar between arms. Overall LS mean changes from baseline to 28 months showed significant differences in favor of ide-cel versus standard regimens (nominal P &amp;lt; 0.05) for 11 domains (effect sizes of 0.26-0.82), and 7 (4 primary: global health status/QoL, cognitive functioning, pain, EQ-5D VAS; 3 secondary: dyspnea, insomnia, constipation) of them exceeded the prespecified MID thresholds (Table). Time to confirmed improvement was significantly shorter (nominal P &amp;lt; 0.05) in the ide-cel arm than in the standard regimen arm for 10 domains, including all primary domains except pain. Time to confirmed deterioration was longer in the ide-cel arm than the standard regimen arm for most domains, with significant differences in emotional functioning, cognitive functioning, and dyspnea (EORTC QLQ-C30). Finally, side effects of treatment favored the ide-cel versus standard regimen arm (EORTC QLQ-MY20) (Table). Conclusions: These patient-reported findings demonstrate that compared with standard regimens, treatment with ide-cel improved MM-relevant disease symptoms, functioning, and overall health status/HRQoL of patients with TCE RRMM in the KarMMa-3 trial. These data further substantiate the superior treatment outcomes of ide-cel over standard regimens in this patient population. Overall, treatment with ide-cel may help alleviate detriments to HRQoL in these patients with complex disease.

Impact of Covid-19 lockdown on health-related quality of life, mental well-being, and daily routines among high school children of Udupi District, Karnataka, India: A cross-sectional study

BackgroundCovid-19 lockdown had a multidimensional impact on the health and well-being among children. The present study aimed to determine the impact of COVID-19 lockdown on Health-Related Quality of Life (HRQOL), mental well-being, and daily routines among high school children, and find the relationship between them. MethodsThis cross-sectional study was conducted among 420 high school students between 13 and 17 years of age from selected High Schools of Udupi District. The data collection instruments included: Background Proforma, KIDSCREEN-27 Index, Stirling Children's Wellbeing Scale, and Daily Routines Questionnaire. ResultsOut of 420 participants, 51.7% were males. Mean age was 14.35 ± 0.96. Around 91.2% participants experienced average HRQOL. Mean HRQOL score was 47.5 ± 5.98. HRQOL subdomains showed average levels of physical well-being, autonomy and parent relations, social support and peers, and school environment. Around 60.2% experienced average mental well-being, and 35.7% experienced poor mental well-being. Mean mental well-being was 48.8 ± 6.62. Daily routines analysis showed that 49.7% were engaged in physical activities, 36.9% used phones for one to 2 h a day, 75.7% had adequate nighttime sleep and 43.3% were mentally stressed due to online classes. A significant correlation was found between HRQOL and mental well-being (r = 0.615, p < 0.001). ConclusionChildren experienced average HRQOL and mental well-being during lockdown. Higher the HRQOL of children, better the mental well-being. Health promotion strategies and good support system from the school is needed to enhance HRQOL and improve mental well-being of children, thus contributing to Sustainable development goal (SDG) 3.

Longitudinal predictors of health-related quality of life in isolated dystonia

ObjectiveTo determine longitudinal predictors of health-related quality of life (HR-QoL) in an international multicenter cohort of patients with isolated dystonia.MethodsOut of 603 dystonia patients prospectively enrolled in the Natural History Dystonia Coalition study, 155 were assessed three times within 2 years for HR-QoL, symptoms of depression, generalized anxiety disorder (GAD), and social anxiety disorder (SAD), as well as dystonia severity and dystonic tremor. In addition, the impact of botulinum neurotoxin (BoNT) injections on HR-QoL was evaluated after 1 year.ResultsDepressive symptoms at baseline predicted lower HR-QoL on all subscales after 2 years (all p ≤ 0.001). Higher GAD scores at baseline predicted lower HR-QoL related to general health, pain and emotional well-being, whereas higher SAD scores predicted higher pain-related QoL after 2 years (all p ≤ 0.006). Dystonia severity at baseline predicted social functioning (p = 0.002). Neither dystonic tremor, age, or sex predicted HR-QoL at 2 years. Two latent categories were revealed across the three-time points: Category 1 with higher total HR-QoL scores (mean HR-QoL = 74.4% ± 16.1), susceptible to symptoms of depression and SAD, and Category 2 with lower total HR-QoL scores (mean HR-QoL = 45.5% ± 17.6), susceptible to symptoms of GAD. HR-QoL improved over the course of 1 year irrespective of the use of BoNT.ConclusionThe longitudinal impact of psychiatric symptoms on HR-QoL emphasizes the importance of incorporating mental health treatment, in particular also the therapy of anxiety disorders, into treatment regimens for dystonia.

Health-related quality of life of metastatic prostate cancer patients treated with prostate Radiotherapy

BackgroundThe impact of prostate radiotherapy on patient-reported health-related quality of life (HRQoL) significantly influences the outcomes of metastatic prostate cancer. We measured and compared HRQoL of metastatic prostate cancer patients who received cytoreductive prostate radiotherapy.MethodsBetween November 23, 2020, and November 21, 2022, we recruited 70 metastatic prostate cancer patients at the Department of Clinical Oncology at Suez Canal University Hospital. Patients were eligible if they had synchronous and metachronous histopathological confirmed metastatic adenocarcinoma and an Eastern Cooperative Oncology Group performance status ≤ 2. Random allocation was performed for either definitive local radiotherapy concurrent with the standard androgen deprivation therapy (ADT) or to the standard ADT alone. Definitive radiotherapy was delivered conventionally (70 Gy/35 fractions) or through the hypofractionated regimen (55 Gy/20 fractions). Patients completed the comprehensive European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-PR25) at baseline, then at three-month intervals for one year. The primary endpoint was patient-reported HRQoL, with secondary endpoints including toxicity and radiographic progression-free survival (rPFS). Mean HRQoL scores between groups were compared using the independent samples t-test.ResultsWe observed clinically significant improvements in urinary and bowel functions between baseline, 3-month, 6-month, and 12-month intervals after receiving definitive prostate radiotherapy. Patients in the radiotherapy group had significantly lower urinary symptoms scores than the control group. However, sexual activity and functioning showed significant deterioration.ConclusionCytoreductive prostate radiotherapy in metastatic prostate cancer patients significantly improved urinary functioning, preserved bowel functioning but was associated with worsening of sexual functioning.Trial RegistrationThis trial was registered on (27/04/2023) with pactr.samrc.ac.za, PACTR202305854600529, URL: https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=25510.