Total Quality Of Life Score Research Articles

Factors Affecting Quality of Life in Adolescents Living With Type 2 Diabetes: A Substudy of the Improving Renal Complications in Adolescents With Type 2 Diabetes Through REsearch (iCARE) Cohort

ObjectivesType 2 diabetes (T2D) disproportionately impacts adolescents living in challenging socioeconomic conditions. However, the impacts of T2D on quality of life (QOL) in this context are unknown. Our aim in this study was to evaluate QOL and identify its biological, psychological, and social determinants among adolescents living with and without T2D from similar sociodemographic backgrounds. Relationships between glycemic stability, early complications, and treatments of T2D and QOL were also examined. MethodsNinety-two adolescents with T2D and 59 at-risk controls were included from the Improving Renal Complications in Adolescents With Type 2 Diabetes Through Research (iCARE) cohort. The main outcome was QOL (Pediatric QOL Inventory [PedsQL]). Biological covariates included age, sex, body mass index z score, glycated hemoglobin, estimated glomerular filtration rate, and urine albumin-to-creatinine ratio. Psychological factors included perceived stress (14-item Perceived Stress Scale) and mental distress (6-item Kessler scale). Social factors included food security (Household Food Security Survey Module) and income quintile. Multivariate linear regression analyses were used to identify factors associated with QOL between adolescents with and without T2D, and within the T2D cohort. ResultsMean total QOL scores among adolescents with T2D were lower than in controls (67.0±14.8 vs 71.7±16.2, p=0.04). Age, sex, and percent Indigenous ethnicity were not significantly different between groups. Mean duration of T2D was 2.3±2.0 years. In the multivariate analysis, QOL was not associated with diabetes status, but negative associations were seen between mental distress (β=−1.46, p<0.001) and food insecurity QOL (β=−6.26, p=0.037). No differences were seen between biological factors and QOL in either analysis. ConclusionsSignificant factors associated with decreased QOL in adolescents living with T2D include mental distress and food insecurity, indicating areas for targeted intervention.

Job satisfaction, depression severity and quality of life ratings of perioperative nurses in robotic-assisted and laparoscopic surgery

The rapid introduction of technological developments into healthcare systems adds another layer of complexity to the already demanding jobs of nurses, particularly for those working in perioperative care. In the present study, our primary aim is job satisfaction, whereas the secondary outcomes are psychological well-being and quality of life (QoL) ratings of perioperative nurses who take part in robotic-assisted and pure laparoscopic surgery. A total of 101 perioperative nurses in six different centers were included in the study. Fifty-one of the nurses were working in robotic-assisted laparoscopic surgery and 50 of them were working in pure laparoscopic surgery. All participants responded to Minnesota Job Satisfaction Questionnaire (MJSQ), Beck Depression Inventory (BDI) and SF-36 QoL Measurement Survey. The two groups did not differ in their total MJSQ, BDI and SF-36 QoL scores (pMJSQ:0.066, pBDI:0.329, pSF-36-QoL:0.136). In addition, there were no differences between the two groups in their intrinsic job satisfaction and extrinsic job satisfaction sub-scores (pintrinsic: 0.473, pextrinsic:0.121). Overall, 18.9% of the nurses reported having moderate to extreme depressive symptoms and most of them (87.1%) had low to moderate levels of job satisfaction. Finally, QoL ratings was generally at moderate levels. Perioperative nurses who work in robotic-assisted laparoscopic surgery do not differ from those working in pure laparoscopic surgery in terms of their job satisfaction, psychological well-being, and QoL ratings. In addition, across groups’ psychological well-being, job satisfaction, and QoL ratings were not particularly high, suggesting that more attention needs to be paid to improving the work conditions of perioperative nurses.

A real-world study of quality of life following treatment with xylometazoline hydrochloride in individuals with common cold.

The common cold is a frequent, acute, and mild upper respiratory human disease. Nasal congestion has been considered the most bothersome symptom in the common cold, impacting quality of life (QoL). Topical decongestants containing steroids benefit QoL in allergic rhinitis, but no published research has assessed the impact of topical decongestants on QoL in the common cold. To evaluate the effects of xylometazoline hydrochloride 0.1% (Otrivin, GSK Consumer Healthcare SARL, Switzerland) for up to 7 days on QoL in participants with nasal congestion associated with the common cold. This was a decentralized, longitudinal, open-label study. The study enrolled 136 participants (⩾18 years) with early symptoms of the common cold, of which 102 were included in the modified intention-to-treat (mITT) population. Within 24 h of study product receipt, participants confirmed a 'plugged nose' and ⩾1 other common cold symptom. Primary endpoints were Wisconsin Upper Respiratory Symptom Survey-21 (WURSS-21) total score, total and individual symptom scores, and total QoL score. Secondary endpoints were additional QoL scores. Exploratory and post hoc analyses included median days to resolution for each QoL factor and analyses of five QoL categories. Consistent improvements in symptoms and QoL were seen in the mITT population. From day 1, improvements were seen in the 'plugged nose' symptom (p = 0.0023), WURSS-21 total QoL score, and all individual QoL scores (p < 0.0001 for all). After the last dose needed, significant improvements were seen in sleep quality (73%), vitality (76%), physical activity (71%), social activity (80%), and sensation (81%). No serious or unexpected adverse events were reported. This study is the first to demonstrate in a real-life setting that treating nasal congestion in adults with xylometazoline hydrochloride 0.1% during the common cold positively impacts QoL factors relevant to daily living [Otrivin: Quality of Life (QoL) Impact in a Real-World Setting; https://clinicaltrials.gov/study/NCT05556148].

Investigating the Effectiveness of an Intervention Protocol Based on Grounded Theory on the Quality of Life and Worry of Patients with Irritable Bowel Syndrome

The present study aimed to investigate the effectiveness of an intervention protocol based on grounded theory on the quality of life and worry of patients with irritable bowel syndrome (IBS). The research method of the present study was mixed-methods, implemented in an exploratory design with a two-phase sequential strategy. The qualitative part of the research, considering its grounded theory basis, was phenomenological based on the Strauss and Corbin (1997) theory. The quantitative part employed a quasi-experimental method with a pretest-posttest control group design and a 2-month follow-up phase. The qualitative study population included books, articles, and theses in the field of IBS patients, and IBS patients visiting the Rāh-e Ehyā Psychiatry Clinic, Shahid Tajrish Hospital, and Behboud Gastroenterology Clinic in Tehran during the fall and winter of 2022. The quantitative study population consisted of all IBS patients visiting the Rāh-e Ehyā Psychiatry Clinic, Shahid Tajrish Hospital, and Behboud Gastroenterology Clinic in Tehran during the fall and winter of 2022. In the quantitative part, 28 IBS patients meeting the inclusion criteria were randomly assigned to either the control or experimental groups. Worry was measured using the Penn State Worry Scale. After eight intervention sessions, the research data were analyzed using repeated measures ANOVA and SPSS software, with a significance level of 0.05. The interaction effect of group×time for the components of physical health (η² = 0.157, P = 0.017, F = 4.85), psychological health (η² = 0.302, P = 0.001, F = 11.27), social health (η² = 0.234, P = 0.001, F = 7.96), and total quality of life score (η² = 0.362, P = 0.001, F = 14.72) was significant. Additionally, the effect of the independent variable on worry (η² = 0.352, P = 0.001, F = 14.15) was significant. The results indicated that the intervention protocol designed based on grounded theory is effective in improving the quality of life and reducing worry in patients with irritable bowel syndrome.

Frailty in middle-aged and older adult postoperative patients with gynecological malignancies structural equation modeling.

Frailty and self-management are important determinants of quality of life in cancer patients. However, their synergistic effects and potential mechanisms on quality of life in middle-aged and older adult postoperative gynecologic malignancy patients have not been adequately studied. This cross-sectional study aimed to explore the relationship between frailty, self-management, and quality of life in middle-aged and older adult postoperative gynecologic malignancy patients. A cross-sectional study was conducted from January 2024 to April 2024 in three gynecological wards of a tertiary hospital in Wuxi. The study recruited 177 patients aged 45 years or older who underwent surgery for gynecologic malignancies (cervical, ovarian, and endometrial cancer). Data were collected using demographic and clinical characteristics, the Edmonton Frailty Scale, the Self-Management Competence Scale, and the EORTC Core Quality of Life Questionnaire. Structural equation modeling was used to explore the interactions between frailty, self-management, and quality of life. The prevalence of frailty in middle-aged and older adult postoperative gynecologic malignancy patients was 39.5%, with a mean total self-management score of 125.81 ± 13.21 and a mean total quality of life score of 69.26 ± 10.88. The fit indices of the model indicated a good fit, and that frailty had multiple effects on quality of life; specifically, frailty could affect the quality of life directly or through self-management, i.e., self-management partially mediated frailty and quality of life. Self-management is a mediating variable between frailty and quality of life, suggesting that clinical workers can intervene in self-management skills to improve patient's quality of life and physical and mental health.

Effect of polycystic ovary syndrome on the life quality of young women.

The study evaluated the opinions of polycystic ovary syndrome on the life quality of women. A total of 249 women with polycystic ovary syndrome participated in this descriptive study between October 2022 and July 2023 in Istanbul, Turkey. Polycystic Ovary Syndrome and Quality of Life was significantly correlated with age (p=0.000) and frequent weight loss diets (p=0.000) (p<0.01). Among the Polycystic Ovary Syndrome and Quality of Life total score and polycystic ovary syndrome symptoms, those with hormone imbalance and insulin resistance had the highest mean scores, while those with menstrual irregularity and fatigue had the lowest. Advancing age changes the quality of life of women with polycystic ovary syndrome. To prevent the negative impact of polycystic ovary syndrome on women's quality of life, it is recommended that health professionals develop effective care plans utilizing available evidence.

The Relationship Between Benefit Finding and Quality of Life in Patients with Chronic Obstructive Pulmonary Disease: The Mediating Effects of Self-Management.

To explore the relationships among benefit finding (BF), self-management, and quality of life (QOL) among patients with COPD. A total of 205 patients with COPD were selected via a convenient sampling method. BF refers to the ability to find meaning or benefit from difficult situations. The Benefit Finding Scale (BFS), self-management scale, and 36-item Short-Form Health Survey (MOS SF-36) were used to investigate BF, self-management and QOL (including a physical component summary (PCS) and a psychological component summary (MCS)). Structural equation modeling was used to examine the relationships among BF, self-management and QOL in patients with COPD and to analyze the effects of BF and self-management on QOL. The total QOL score of patients with COPD was 61.38±21.15, and the PCS and MCS scores were 57.67±23.60 and 65.09±21.24, respectively. BF and self-management had positive predictive effects on both the PCS (βBF = 0.519, PBF = 0.012; βself-management = 0.473, Pself-management = 0.012) and MCS (βBF = 0.425, PBF = 0.013; βself-management = 0.535, Pself-management = 0.016) of patients with COPD, and self-management mediated the relationships of BF with the PCS (β = 0.144, P = 0.008) and MCS (β = 0.162, P = 0.007). The QOL of patients with COPD needs to be improved, especially in terms of physical aspects. Helping COPD patients obtain better BF not only helps them improve their PCS and MCS directly but also indirectly through enhancing self-management to improve their PCS and MCS.

Exploring the Correlation Between Sexual Function, Mental Health, and Quality of Life among Stroke Survivors in South-East Nigeria

Stroke’s multifaceted impact necessitates understanding its effects on survivors’ psychological well-being, daily functioning, and sexual health. This study aimed to investigate the correlation between sexual function, mental health, and quality of life (QoL) among stroke survivors. This cross-sectional survey involved 82 stroke survivors recruited from selected healthcare centers in Nnewi. The stroke-specific QoL scale and Mental health inventory-38 were used to evaluate the QoL and mental health status of the participants, respectively. Male and female sexual functions were assessed using the International Index for Erectile Function and Female sexual index, respectively. Mann–Whitney U test and Spearman’s rank order correlation were used to analyze data. The participants’ mean total QoL score was 112.57±37.67, representing 46% of the maximum possible score, with the highest and lowest scores in vision (68.94%) and social role (24.39%) domains. The participants scored &lt;50% in seven quality-of-life domains. The mean total mental health score was 141.76±13.70, with the highest and lowest scores in anxiety (70.75%) and emotional tie (50.71%) domains, respectively. Males had a mean total sexual function score of 30.80%, with none reaching the 50th percentile, except overall satisfaction (50.61%), while females scored 16.41%, with none reaching the 50th percentile and 0.0% in the pain domain. This study highlights the significant challenges stroke survivors face in QoL, mental health, and sexual function. The findings underscore the need for holistic and tailored interventions addressing these multidimensional aspects of post-stroke care, focusing on improving sexual well-being to enhance overall life satisfaction in male survivors.

농촌지역 여성노인의 신체적 여가활동 참여가 신체적 기능과 삶의 질에 미치는 효과

Objective: This study aimed to assess the effects of a physical leisure activity program on the physical function and health-related quality of life of elderly women in rural areas. Methods: One hundred and thirteen elderly women living in rural communities participated using a one-group pre-post design. The physical leisure activity program was conducted for 16 group activities over 8 weeks. To determine changes in the physical function of the elderly after participation, muscle strength, flexibility, and balance ability were measured, and the 8 domain Short-Form Health Survey (SF-8) was used to examine changes in quality of life. Results: The physical function of the participants in the program was significantly increased in upper and lower limb muscle strength, balance, and flexibility (p &lt; 0.05). The total score of QOL of elderly women who participated in the program also improved from 335.73 ± 52.93 points to 395.42 ± 28.79 points, and significantly changed in all sub-items (p &lt; 0.05). Conclusion: Participation in leisure activities was confirmed effective not only in improving the physical health of the elderly women, but also in improving their quality of life. In the future, we look forward to the development and support of various participatory activity programs suitable for rural areas.

Relationship of depression and loneliness with quality of life in rural widowed elderly women living alone.

Rural widowed elderly women living alone may face higher risks of depression and loneliness than general elderly people, which will have an impact on their quality of life. This study aims to explore the correlation of depression and loneliness with quality of life among rural widowed elderly women living alone. A two-stage cluster sampling method was used to select 234 rural widowed older women living alone in Longshan county, Xiangxi autonomous prefecture, Hunan Province, and a questionnaire survey was conducted with the General Situation Questionnaire, the Geriatric Depression Scale-15 (GDS-15), the University of California, Los Angeles (UCLA) Loneliness Scale-8 (ULS-8), and the 36 Items Short Form Health Survey (SF-36). The ages of 234 rural widowed older women living alone were (73.29±7.36) years. Among them, 103 (44.0%) women were detected as depressed, 114 (48.7%) were not lonely or mildly lonely, 111 (47.4%) were moderately lonely, and 9 (3.9%) were severely lonely. The total quality of life scores were 63.39±19.70. Depression and loneliness were negatively correlated with quality of life (all P<0.001). After adjusting for confounding factors, multiple linear regression analysis showed that age, number of acute and chronic diseases, personal monthly income, depression, and loneliness independently impacted the quality of life among rural widowed older women (all P<0.05). Depression and loneliness can affect the quality of life of rural widowed older women living alone. In healthy aging efforts, the quality of life of these rural widowed older women can be improved by strengthening the management of underlying illnesses, increasing income, and alleviating depression and loneliness.

Multidisciplinary diagnosis and treatment nutritional support intervention for gastrointestinal tumor radiotherapy: Impact on nutrition and quality of life.

Gastrointestinal tumors are a major cause of cancer-related deaths and have become a major public health problem. This study aims to provide a scientific basis for improving clinical treatment effects, quality of life, and prognosis of patients with gastrointestinal tumors. To explore the clinical effect of the multidisciplinary diagnosis and treatment (MDT) nutrition intervention model on patients with gastrointestinal tumors. This was a case control study which included patients with gastrointestinal tumors who received radiotherapy at the Department of Oncology between January 2021 and January 2023. Using a random number table, 120 patients were randomly divided into MDT and control groups with 60 patients in each group. To analyze the effect of MDT on the nutritional status and quality of life of the patients, the nutritional status and quality of life scores of the patients were measured before and after the treatment. Albumin (ALB), transferrin (TRF), hemoglobin (Hb), and total protein (TP) levels significantly decreased after the treatment. The control group had significantly lower ALB, TRF, Hb, and TP levels than the MDT group, and the differences in these levels between the two groups were statistically significant (P < 0.05). After the treatment, the MDT group had significantly more well-nourished patients than the control group (P < 0.05). The quality of life total score, somatic functioning, role functioning, and emotional functioning were higher in the MDT group than in the control group. By contrast, pain, fatigue, nausea, and vomiting scores were lower in the MDT group than in the control group (P < 0.05). MDT nutritional intervention model effectively improves the nutritional status and quality of life of the patients. The study provides a rigorous theoretical basis for improving the prognosis of cancer patients. In the future, we intend to provide additional treatment methods for improving the quality of life of patients with cancer.

Longitudinal Changes in Quality of Life Before and After Thyroidectomy in Patients With Differentiated Thyroid Cancer.

The objective of this prospective study was to assess longitudinal variations in health-related quality of life (HR-QOL) in patients diagnosed with differentiated thyroid cancer (DTC) before and after thyroidectomy. A cohort of 185 DTC patients who underwent thyroidectomy between January 2013 and December 2017 and who completed all necessary questionnaires was evaluated. Their HR-QOL was gauged using the University of Washington Quality of Life questionnaire (UW-QOL) and the City of Hope Quality of Life-Thyroid Version questionnaire (QOL-TV) both prior to surgery and at 3 months, 6 months, 1 year, 2 years, 3 years, and 5 years postoperatively. Out of 185 patients, 150 (81.1%) were female, with an average age of 48.7 ± 12.9 years. For both UW-QOL and QOL-TV, the total composite QOL scores notably declined from preoperative levels to 3 months postoperatively, then gradually improved over 5 years, ultimately exceeding preoperative scores. Factors such as total thyroidectomy, radioactive iodine (RAI) ablation, and postoperative hypoparathyroidism were associated with lower physical composite QOL scores. Patients who underwent remote-access thyroidectomy expressed significantly higher satisfaction with appearance compared with those who had conventional thyroidectomy. Mood and anxiety were major clinical concerns both before and after surgery, showing considerable improvement postoperatively. For DTC patients, HR-QOL experienced a significant drop 3 months postsurgery, subsequently showing gradual improvement, surpassing preoperative QOL by 5 years. Factors contributing to improved physical QOL included the utilization of remote-access thyroidectomy, less extensive thyroidectomy, and the absence of RAI ablation and hypoparathyroidism.

Comprehensive analyses of neurodevelopmental outcomes and quality of life of children with biliary atresia.

To holistically evaluate neurodevelopmental outcomes and quality of life (QOL) of Japanese patients with biliary atresia (BA) and to investigate the factors associated with the outcomes. This study enrolled patients with BA aged 5-18 years who visited Osaka University Hospital in 2021. Neurodevelopmental assessments were performed to evaluate intellectual ability, cognitive functions and adaptive skill levels. Furthermore, emotional and behavioral issues, characteristics of attention deficit hyperactivity disorder, and QOL were concomitantly assessed in the same cohort. Biochemical and social factors associated with the results were examined. Fifty-three patients, with a median age of 11.2 years were included in the analyses. Patients with BA had a significantly lower Full-Scale Intelligence Quotient or developmental quotient (FSIQ/DQ) score and Vineland Adaptive Behavior Scale (VABS) composite score than the general Japanese population. Household education level and short stature were associated with low and borderline FSIQ/DQ and VABS composite scores, respectively. Among patients with low and borderline FSIQ/DQ scores, those with average or high VABS composite scores received significantly less neuroeducational care than those with low and borderline VABS composite scores. Despite the low FSIQ/DQ and VABS composite scores, the total QOL scores were higher than those of the general population. Patients with BA had intellectual and behavioral impairments. Notably, patients with intellectual impairments are overlooked and not followed up, especially if adaptive skills are maintained.

Abstract B144: Associations between experiences of discrimination and quality of life in a cohort of Black/African American breast cancer survivors

Abstract Introduction: Racism and discrimination have been associated with poorer mental and physical health, and decreased health-related quality of life (QoL) in the general population, however; there are limited studies examining the impact of discrimination in cancer survivors. We examined the relationship between experiences of discrimination and QoL in Black women diagnosed with breast cancer. Methods: Data were obtained from women enrolled in the Women’s Circle of Health Follow-up Study, a population-based cohort study of Black breast cancer survivors in New Jersey, enrolled within 10 months of diagnosis. Women included in these analyses were diagnosed between 2015-2019. Self-reported experiences of discrimination along with information on potential covariates and effect modifiers were collected during baseline in-person interviews. QoL was assessed at follow-up visits approximately 24 months post-diagnosis using a validated self-reported QoL of measure, the Functional Assessment of Cancer Therapy – Breast (FACT-B), which consists of 5 individual domains (emotional, functional, social/family, and physical wellbeing, as well as a disease specific domain for breast cancer). We examined the association of experiences of discrimination (none, low (&amp;lt;median 43%), high (≥ median 43%)) with continuous total QoL score using linear regression, adjusted for age at diagnosis, tumor stage, educational attainment, household income, smoking status, insurance, and body mass index. We also examined statistical interaction by neighborhood socioeconomic index (nSES), coping strategy (assessed using the Brief Resilient Coping Scale), and spirituality (assessed using the Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being (FACIT-Sp-12) scale) using cross-product terms with experiences of discrimination. Results: Of 220 study participants, 73% of participants reported experiencing any discrimination. In age adjusted models, women who reported the highest experiences of discrimination had lower QoL for overall FACT-B scores and the subscale scores (no discrimination, mean overall FACT-B:117.7, 95% confidence interval (CI): 112.4, 122.9; high discrimination, mean overall FACT-B: 106.8, 95% CI: 102.1, 111.5). Similar associations were observed in fully adjusted models, where women who reported the highest experiences of discrimination had lower QoL. For example, for women who reported no discrimination the mean overall FACT-B score was 114.7 (95% CI: 107.9, 121.4) and 100.8 (95% CI: 94.2, 107.5) for women who reported the highest level of discrimination. No evidence of statistically significant interaction was observed for nSES, spirituality, or coping strategy. Conclusions: In a population-based study of Black breast cancer survivors, experiences of discrimination were associated with poorer QoL, as measured by FACT-B. Citation Format: Nur Zeinomar, Marley M. Perlstein, Bo Qin, Hari S. Iyer, Jesse J. Plascak, Christine B. Ambrosone, Kitaw Demissie, Chi-Chen Hong, Elisa V. Bandera. Associations between experiences of discrimination and quality of life in a cohort of Black/African American breast cancer survivors [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B144.

An assessment of the quality of life in chronic heart failure patients

Abstract Aim. The aim of this cross-sectional study was to evaluate quality of life (QoL) and selected aspects of patients with chronic heart failure. Material and methods. The Minnesota Living with Heart Failure Questionnaire was used for an assessment of QoL. Data were obtained on depression, illness perception, social support, self-sufficiency, and severity of heart failure according to NYHA classifi cation. Data were analysed using descriptive statistics, the Kruskal–Wallis and Mann-Whitney test, and the Spearman correlation coefficient. Linear regression analysis was also performed. Results. Correlation analysis (p &lt; 0.05) indicated that patients with reduced self-suffi ciency (r = -0.3529) and patients with more severe heart failure (r = 0.2642) reported a poorer QoL. Worse the illness perception (r = 0.4113), more frequent depression (r = 0.5470) and a worse subjective assessment of the state of health (r = 0.4394) indicated a worse QoL. The predictors of the total QoL score were depression (p = 0.000), illness perception (p = 0.001), self-sufficiency (p = 0.008), and subjective assessment of the state of health (p = 0.005). Conclusions. A comprehensive approach with an emphasis on improving QoL is necessary in the care of patients with chronic heart failure.

Current status of exercise and its impact on quality of life in patients undergoing peritoneal dialysis in the post-COVID-19 period.

The aims of this study were to investigate the current status and the influence factors of exercise, and to explore the impact of exercise on the quality of life (QoL) in peritoneal dialysis (PD) patients in the post-COVID-19 period. Those PD patients who were followed up between September 2020 and August 2021 were enrolled. The collected data included demographic information, clinical data, exercise data, and QoL. In total, 339 PD patients were included in this cross-sectional study. The mean age was 44.0 ± 13.0 years, with a median PD duration of 6.7 (1.7 - 41.9) months. The primary renal disease was glomerulonephritis (68.4%). 277 (81.7%) PD patients performed exercise, with median exercise time 5.0 (3.5 - 7.8) hours per week. The main type of exercise was slow walking. Pain (odds ratio (OR) = 0.311, p = 0.002) and lower hemoglobin level (OR = 1.016, p = 0.033) were independent risk factors for exercise. Moreover, male sex (B = 2.803, p < 0.001) was an independent protective factor, while advanced age (B = -0.097, p < 0.001), higher body mass index (B = -0.154, p < 0.001), and pain (B = -0.643, p = 0.023) were independent risk factors for exercise intensity. After adjustment for other confounders, exercise (B = 5.787, p = 0.037) was an independent protective factor for total score of QoL in PD patients. In the current study, 81.7% of PD patients performed exercise in the post-COVID-19 period. Pain and anemia were independent risk factors for exercise in PD patients. Advanced age, female sex, higher body mass index, and pain were independently associated with lower exercise capacity in PD patients. PD patients undergoing exercise had better QoL.

Patient and Parent-Reported Outcomes Post-Treatment with Shmir-Based Lentiviral Gene Therapy for Sickle Cell Disease

Background: Sickle cell disease (SCD) is among the most common monogenic disorders and causes lifelong complications, including vaso-occlusive events (VOEs) and decreased quality of life (QOL). Gene therapy (GT) has emerged as a potential curative therapy for SCD, but its impact on patients' QOL remains underexplored. We previously reported preliminary safety and efficacy data on 6 patients who received autologous CD34+ cells transduced with the BCH-BB694 lentiviral vector (Esrick et al., NEJM, 2021). Here, we report the first results of parent- and patient-reported outcomes (PROs) for 10 patients treated with BCH-BB694 up to 24 months post-infusion. Methods: We evaluated the QOL of 10 patients with severe SCD who received GT with BCH-BB694 as part of a single-center, open-label pilot study. Assessment occurred during patients' scheduled visits for safety and efficacy monitoring at baseline and months 3, 6, 12, and 24. QOL was measured using the Pediatric Quality of Life Inventory (PedsQL) self- and parent-reported questionnaires for children &amp;lt; 18-years old and the self-reported 36-Item Short Form Health Survey (SF-36) for adults ≥ 18-years old. Assessed domains included: physical functioning, pain, emotional functioning, social functioning, school functioning, and general health. The percent change from baseline to post-treatment score (last observation carried forward [LOCF]) was calculated with 95% confidence intervals (CI). Clinically significant improvement was defined as a score increase ≥5%. Other laboratory and clinical data collected at study timepoints included fetal hemoglobin (HbF) measured by high-performance liquid chromatography, VOEs (including vaso-occlusive pain, priapism, and acute chest syndrome), and transfusion frequency. Results: All patients demonstrated elevated HbF levels at LOCF (mean 26.9%, range 11.7-38.2%). Of 10 patients enrolled, 1 was missing baseline data and 9 had sufficient data for analysis. Patients (n=9) were aged 8-27 years at time of BCH-BB694 infusion. Baseline self-reported total scale scores (median 69.6, interquartile range [IQR] 50.1, 77.2) were consistent with baseline PedsQL scores for patients with SCD reported in the literature (median 67.4, IQR 50.0, 83.5) (Panepinto et al., J Pediatr Hematol Oncol, 2008). Average self-reported total scale scores increased at 3 months post-treatment (mean % change from baseline [95% CI]: 21% [3.3% to 38%]) and maintained at LOCF (13% [-10% to 36%]). For the 3 patient/parent pairs, parent-reported total scale scores appeared more variable, with a mean % change from baseline of -1% (95% CI: -40% to 38%) at 3 months and -17% (95% CI: -36% to 1%) at 24 months. Clinically significant self-reported improvement occurred in 8 patients (89%) for at least 1 domain and in 5 (56%) for overall QOL. The patient without baseline data reported a maximum total scale score of 100 at 24-months. Specific domains (mean % change from baseline [95% CI]) demonstrating significant improvement included: general health (7% [-11%, 25%]), physical functioning (30% [-15%, 76%]), and emotional functioning (15% [-9%, 39%]). Excluding 1 patient who had a low HbF induction associated with a low in vivo vector copy number and increase in VOEs from baseline, this cohort demonstrated decreased numbers and/or absence of VOEs post-GT (n=8), and all patients required significantly fewer transfusions. Conclusion: At most recent study visit up to 24 months post-treatment, SCD patients who had received GT with successful HbF induction (&amp;gt;20% in 8 patients) reported higher QOL than baseline on average. Excluding 1 patient, this cohort demonstrated improvement in at least 1 QOL domain following GT, suggesting a positive impact of GT on QOL in this group of patients with SCD. For patients &amp;lt;18-years, discrepancies between parent-reports and higher self-reports warrant future investigation. Few patients (n=3) did not demonstrate overall QOL total score improvement post-GT. Follow up studies may assess whether this reflects insufficient treatment response, treatment- or pre-existing disease-related morbidity, and/or need for more specific QOL assessments. An understanding of the relationship of change in QOL with VOE and/or transfusion rates will be enriched by more patients, longer follow-up, and PRO tools designed specifically for the SCD population. Larger studies are needed to fully elucidate the impact of GT on QOL in this population.

Effect of Prebiotic Rich Diet on Gut Microbiome in Patients (Pts) Undergoing Stem Cell Transplants- Results of Phase I Study (NCT04629430)- Clinical Outcomes

Introduction An increase in gut microbial diversity during Stem cell transplant (HSCT) has been associated with improved treatment-related mortality (TRM) and gastro-intestinal graft versus host disease (GI GVHD). Prebiotics are indigestible carbohydrates rich in fructo-oligosaccharides such as inulin and Galacto- oligosaccharides. Prebiotics are metabolized by the gut bacteria to produce short-chain fatty acids which in turn nourish the gastrointestinal- epithelium. Hence, the implementation of a diet rich in pre-biotics could increase gut microbial diversity and improve outcomes such as GVHD and Overall survival (OS). We report clinical results from single-center Phase I study that investigates the feasibility of consuming a prebiotic rich diet in patients undergoing HSCT. Methods Both Allogeneic (Allo) and Autologous (Auto) HSCT Pts &amp;gt;18 yrs were included. Allo Pts undergoing second transplants and needing broad-spectrum antibiotics 1 week before starting the conditioning regimen were excluded. Pts were requested to have at least 2 servings of prebiotic-rich foods such as oats, artichokes an greens daily from the date of conditioning HSCT chemotherapy to Day +100. A list of vegetables and grains with serving size of approximately 5 grams of commercially available fructo-oligosaccharides per day was provided and consumption was recorded with a patient-reported diary. Stool samples were collected before the start of HSCT conditioning regimen, and once a month for 3 months post-transplant. Compliance was defined as consuming 2 servings of prebiotics &amp;gt;/= 80% days of the study period. Secondary endpoints included incidence of acute GVHD, Clostridium difficle infections (C.Diff), Neutrophil (ANC), and Platelet Engraftment. Exploratory endpoints included Meta- genomics sequencing of the stool samples and patient-reported quality of life (QoL) outcomes. Results 27 Pts, median age 60 yrs were enrolled in this phase 1 study. 5 patients withdrew prior to Day 100 of the intervention. Difficulty in following the diet and maintaining the diary were cited as the main reasons for the withdrawal. 14 were female; 14 pts had Allo HSCT, 5 of whom had Myeloablative conditioning. Only 8 pts were able to comply with the diet (29.6%), 19 were not compliant - of whom 11 (40.8%) pts were not able to comply with the diet and 8 patients were not able to provide a diary. Attempts were made to communicate with them to get an approximation of consumption, none reported &amp;gt; 80% of the study period. None of the patients had C diff infections, 3 of 14 Pts developed acute skin GVHD, grade 1-2; no GI GVHD was reported. Day 100 overall Survival was 100% for both Auto and Allo transplant pts. 1 yr OS 25 pts were evaluable and was 100% and 85.8% in the Auto and Allo Group respectively. 1 pt died of relapsed disease, and another of uncontrolled sepsis at Day +360, after cessation of the diet. Median days for ANC engraftment, and platelet engraftment in the Auto group were 10 days and 16 days; in the Allo group were 17 days and 18 days respectively. The mean percent of change in weight from pre-conditioning to day +100 was -10.26% in the Allo group and -2.5% in the Auto group. FACT-BMT QOL total score decreased by a mean percent of 10.7 % in the Allo pts and improved by 3.8% in the Auto group at Day 100 after transplant from baseline. Meta-genomic analysis of stool samples is currently ongoing. Conclusion Results from the Phase I study unfortunately show that a naturally occurring prebiotic-rich diet of green leafy vegetables, pulses, and fiber-rich food is very hard to consume daily in the first 100 days after HSCT. Regional dietary habits, mucositis, and chemotherapy-related change in taste could be contributory factors. However, most importantly implementation of this diet did not result in adverse events such as increased sepsis, GI GVHD, or C Diff infections and reported a remarkable 1 yr OS. Hence further studies to help improve compliance of diet with foods rich in pre-biotics may have a valuable impact on post-Transplant outcomes.

Quality of life in patients with vitiligo in North Macedonia

Vitiligo is an acquired depigmentation deficit with a high prevalence, ranging from 0.5% to 7.8%. The aim of the study was to measure the quality of life (QL) of patients with vitiligo, expressed through the Dermatological Quality of Life Index (DLQI). Materials and methods: This cross-sectional study was realized in a period of 1 year. Two questionnaires were used in the study. Тhe first questionnaire contains data from the DLQI, designed for use in adults over 16 years of age, taken from the Cardiff University in the UK. The second questionnaire contains demographic and clinical characteristics of patients (age, gender, place of residence, marital status, education), activity, comorbid diseases and BMI, age at onset, site of onset of lesions, duration of disease, family history, type, activity, natural course, body mass index (BMI) and therapy. Results: Among 71 subjects included in the study, the total score of the DLQI ranged from 0 to 28 (from a maximum of 30 points), and the average was 11.70 ± 5.7. Female patients had greater QL impairment (total mean value of 8.03) than men (5.99); there was a statistically significant difference between both sexes (P = 0.019). The total score of QL in terms of symptoms related to the condition in the six domains strongly affected QL of 45.1% of patients. The QL was significantly worse in the studied group of 16-30 years (13.85 ± 5.3) compared to the population of 51-60 and over 60 years (6.75 ± 5.7, and 7.0 ± 2.3). As the age of patients advanced, the QL improved. Subjects with higher education had a higher score (14.41 ± 6.6; p=0.001). Conclusion: Female patients with vitiligo have impaired QL in comparison to male. With age, the QL in patients with vitiligo improves. Patients with a lower degree of education have a better QL

Quality of Life After Obstetric Fistula Among Women in Developed Countries

This research aimed to evaluate the correlation between the experience of obstetric fistula and quality of life. Extensive research exists explaining obstetric fistula and the associated effects among women in underdeveloped countries; however, there is a lack of research pertaining to women who have experienced this condition in developed countries. We surveyed women who experienced obstetric fistula in developed countries. Participants were identified by their association with a social media support group for women affected by obstetric fistula (n= 68). Participants completed the Ferrans &amp; Powers Quality of Life Index to provide data relating to their perceived quality of life after experiencing obstetric fistula. An overall score calculated from four subscales determined total quality of life scores. Each scale evaluated the participants’ perception of their satisfaction and the importance of particular items and assigned a score from 0-30 based on participant response. Quality of life scores ranged from 4.27 to 29.58, with an average score of 19.4. The results revealed a significant correlation between obstetric fistula and diminished quality of life. The subscale with the lowest scores was the Health and Functioning subscale with a minimum score of 1.12 and maximum score of 29.54.