Related Quality Of Life Research Articles

Exploring the role of health-related quality of life measures in predictive modelling for oncology: a systematic review.

Health related quality of life (HRQoL) is increasingly assessed in oncology research and routine care, which has led to the inclusion of HRQoL in prediction models. This review aims to describe the current state of oncological prediction models incorporating HRQoL.A systematic literature search for the inclusion of HRQoL in prediction models in oncology was conducted. Selection criteria were a longitudinal study design and inclusion of HRQoL data in prediction models as predictor, outcome, or both. Risk of bias was assessed using the PROBAST tool and quality of reporting was scored with an adapted TRIPOD reporting guideline.From 4747 abstracts, 98 records were included in this review. High risk of bias was found in 71% of the publications. HRQoL was mainly incorporated as predictor (78% (55% predictor only, 23% both predictor and outcome)), with physical functioning and symptom domains selected most frequently as predictor. Few models (23%) predicted HRQoL domains by other or baseline HRQoL domains. HRQoL was used as outcome in 21% of the publications, with a focus on predicting symptoms. There were no difference between AI-based (16%) and classical methods (84%) in model type selection or model performance when using HRQoL data.This review highlights the role of HRQoL as a tool in predicting disease outcomes. Prediction of and with HRQoL is still in its infancy as most of the models are not fully developed. Current models focus mostly on the physical aspects of HRQoL to predict clinical outcomes, and few utilize AI-based methods.

Health-related quality of life and sexual function among women with overweight or obesity and urinary incontinence: a cross-sectional study.

To assess the health related quality of life (HRQoL) and sexual function related to urinary incontinence (UI) severity among women with overweight or obesity. From September 2023 to January 2024, a cross-sectional was conducted among women seeking weight loss with overweight or obesity focusing on the symptoms and effects of UI. The degree of UI severity, UI-specific HRQoL, sexual function, and generic HRQoL were detected via Incontinence Modular Questionnaire-Urinary Incontinence Short Form (ICIQ-UI-SF), Incontinence Impact Questionnaire-Short Form (IIQ-7), Short-form Prolapse Incontinence Sexual Questionnaire (PISQ-12), and European Quality of Life-5 Dimensions 5-Level questionnaire (EQ-5D-5L) respectively. Out of 1205 valid responses, 564 (46.8%) reported UI with 354 classified as mild, 179 as moderate, and 31 as severe based on ICIQ-UI-SF scores. The mean age and body mass index of the respondents were 36.65 years and 29.9kg/m², respectively. Individuals with more severe symptoms of UI exhibited correspondingly lower levels of UI-specific HRQoL, sexual function, and generic HRQoL. Although the correlations were weak, the severity of UI symptoms measured by ICIQ-UI-SF and IIQ-7 were significantly correlated with the mean utility values (r=-0.335, and - 0.351, P<0.001) of EQ-5D-5L especially in the domains of anxiety/depression symptoms (r = 0.339 and 0.322, P<0.001). Nearly half of women seeking weight loss with overweight or obesity may experience UI, which significantly affects HRQoL and sexual function. The severity of UI symptoms is significantly correlated with the generic HRQoL measured by EQ-5D-5L, especially in the domain of anxiety/depression symptoms.

Health-related Quality of life among patients with Ankylosing Spondylitis and its correlation with disease-related variables. A Cross-Sectional Study in Erbil City

Background and objectives: Ankylosing spondylitis is a chronic, rheumatic, inflammatory disease that basically involves axial skeleton. As a result, functional limitations develop that may negatively affect quality of life. Our aim is to assess the quality-of-life in patients with ankylosing spondylitis and to determine its’ correlation with disease variables including disease activity, functional status, spinal mobility, and bodily pain. Methods: A cross-sectional study enrolled fifty patients with ankylosing spondylitis in the Rizgari teaching hospital was conducted between November 2022 to March 2023. Both short form-36 and ankylosing spondylitis quality of life instruments were used to evaluate Health related quality of life. Bath Disease Activity Index, Bath Functional Index, Bath Metrology Index, and total pain visual analogue scale used to assess disease related variables. Results: fifty patients aged (20-50) years participated, their mean age was (35.4), the majority (80%) were males. The peripheral joints were involved in 42% of these patients. The mean ankylosing spondylitis quality of life score was 8.7 ± (4.6) SD, short form-36 domains of physical role limitation, general health, vitality, and bodily pain had the lowest scores (43.5, 44.6, 45.8, 50.7) respectively. both Bath disease activity index (B = 1.047; p = 0.010) and Bath functional index (B=0.974; p=0.012) were poor predictors of Ankylosing Spondylitis Quality of Life score, while Bath Metrology Index (B = -3.444; p = 0.043) was the main predictor for physical functioning. Conclusion: The health-related Quality of life in participants was significantly impaired. High disease activity, poor functional status and limitation in spinal mobility were recognized as poor predictors of Health-related quality of life.

Test-retest reliability of the Swedish version of the Modified Fatigue Impact Scale in people with mild to moderate multiple sclerosis

BackgroundFatigue is a subjective lack of physical and/or mental energy and is commonly perceived by people with multiple sclerosis (MS). People with MS often describe fatigue as the most troublesome MS related impairment, and it also has a negative impact on ability to initiate or maintain activities as well as work capacity and health related quality of life. The Modified Fatigue Impact Scale (MFIS) is a patient-reported outcome measurement of fatigue. The scale consists of 21 items divided into three subscales to capture the cognitive (10 items), physical (9 items) and psychosocial (2 items) dimensions of fatigue. MFIS is translated to Swedish but not evaluated for test-retest reliability for use in Swedish settings of rehabilitation or research. The aim of the study was to investigate the test-retest reliability of the total score and the scores of the subscales of the Swedish version of the MFIS in people with mild to moderate MS-disability. MethodsEligible study participants were people with mild to moderate overall MS-disability according to the Expanded Disability Status Scale (EDSS) – EDSS score from 2.0 to 5.5. The included participants completed the Swedish version of MFIS at two occasions, one week apart. Intraclass Correlation Coefficient (ICC) agreement was used to analyse the test-retest reliability of the total score and a quadratic weighted Cohen's kappa was used to analyse the subscale scores. Further, measurement error, smallest detectable change (SDC), and limits of agreement (LOA) were calculated for the total score of the whole sample. ResultsA total of 54 people with MS were included in the study. The mean age was 50 years and 70% were female. The mean overall MS-disability were 3.7 according to the EDSS, 28 of the participants had mild MS-disability (EDSS 2.0 to 3.5) and 26 of the participants had moderate MS-disability (EDSS 4.0 to 5.5). Results of test-retest reliability for the whole sample of the total score of the MFIS were acceptable with an ICC value of .84, a measurement error of 8.2, an SDC of 22.6 and LOA of 23.3 and -22.4. The ICC values of the total score were also acceptable for the subgroups with mild MS-disability and moderate MS-disability with ICC values of .83 and .74. The kappa values for the whole sample showed excellent or fair to good test-retest reliability of the physical, cognitive and psychosocial subscales with values of .83, .84, and .75. ConclusionThe results of this study show that the total score of the Swedish version of MFIS is a reliable measure and a change of 23 points indicates a true change in fatigue impact in people with mild to moderate MS-disability. The test-retest reliability of the cognitive and the physical subscales were considered as excellent, and the psychosocial subscale as fair to good. The total score of the scale can be recommended for use in Swedish populations.

Vision-related Quality of Life (VRQOL) and its determinants among the Elderly in rural blocks of Haryana, India

BackgroundVision related quality of life (VRQOL) measures one’s satisfaction with their visual ability to perform daily activities. Aging leads to vision impairment that can negatively affect VRQOL and physical, psychological, and social well-being. ObjectiveTo assess vision-related quality of life (VR-QOL) and its determinants among elderly residents from rural blocks of Haryana, India. MethodThis cross-sectional study was performed across 52 Indian villages. The vision-related quality of life scores was assessed using National Eye Institute Vision Function Questionnaire-25(VFQ-25). Social Connectedness, Geriatric Depression Scale, Mini-Mental Status Examination, and the Katz Index of Independence were collected using validated tools. Continuous data was represented as Mean (±SD) or median (IQR) depending upon their distribution. Categorical data as frequency (%). Bivariate analysis was done using Student t-test or Rank Sum test for continuous variables (for up to 2 groups) and One-Way ANOVA was run for continuous variables (for more than 2 groups). Chi-Sq. test or Fisher’s for categorical variables and multivariable linear regression model was run to calculate the determinants of the VFQ composite score. ResultAmongst the 420 participants, 58% were females and 74% were illiterates. The mean VR-QOL was 42.30 ± 11.19 in the study population. The study found higher VR-QOL scores in General Health, Distance activities, and Near activities, while lower scores were observed in Mental health, Dependency, Social functioning, Ocular pain, General vision, and Role difficulties. Both the mean VR-QOL composite score and the VR-QOL domains of General Health, General Vision, Ocular Pain, Role Difficulties, Mental Health, and Dependence were all greater for women than for men. Among the reported morbidities 26% had hearing loss, 23% were hypertensives, 9% were diabetics, 85% were dependent, 60% had depression, 14% had moderate dementia, 10% had lower tendency to connect, 8% had low vision and 35% had vertigo. VFQ scores were lower among males, non-Hindus, hypertensives and among person with history of vertigo and those living in dim light than their counterparts. ConclusionThe current study shows that VR-QOL is significantly lower in male, participants with history of vertigo, hypertension, diabetes and who live in dim light. There is a need to develop strategies to address these determinants through multidisciplinary approach including chronic disease management and environmental modification and promote healthy aging of elderly population.

Response of health-related quality of life following pediatric/congenital cardiac catheterization procedures

BackgroundHealth related quality of life (HRQOL) is a patient-reported metric (PRM) that provides a holistic measure of health that is not addressed in traditional outcome measures. The acute responsiveness of HRQOL after pediatric/congenital cardiac catheterization procedures has not, to our knowledge, been studied. MethodsA single-center prospective cohort study was performed, longitudinally evaluating HRQOL and other PRM in school-age children and adolescents (ages 8-18) undergoing diagnostic and interventional cardiac catheterization procedures prior to their scheduled procedure, and then 1 day, ∼1 month, and ∼3 months after the procedure. Differences between HRQOL at baseline and at 1- and 3-month follow-up were evaluated using paired Student's t-tests. ResultsA total of 70 patient-parent/guardian dyads were studied. The participating patients were 13±3 years old, 51% female, and 74% non-Hispanic white, with 54% undergoing a diagnostic procedure. The trajectory of cardiac-specific HRQOL as measured through Pediatric Cardiac Quality of Life Inventory differed for patients undergoing diagnostic and interventional procedures. Following diagnostic procedures, there was no significant change in cardiac-specific HRQOL (p>0.05). After interventional procedures, patient-reported cardiac-specific HRQOL increased at both 1-month (4.3±11, p=0.04) and 3-months (5.9±11.4, p=0.02), though the same changes were not seen in parent/guardian-reported cardiac-specific HRQOL (p>0.05). PROMIS measures of physical function, psychological symptoms, and social function were associated with baseline cardiac-specific HRQOL (all p<0.05), but no associations were seen between other patient-reported outcomes and baseline HRQOL or change from baseline to 3-month follow-up. ConclusionAcross a range of transcatheter interventional procedures, patient-reported cardiac-specific HRQOL improved in short term follow up, though these changes were not seen in parent/guardian reported measures. Incorporating these patient-centered metrics into evaluation of transcatheter therapies may provide more accurate measures of comparative effectiveness.

An Early Supported Discharge (ESD) Model of Care for Older Adults Admitted to Hospital: A Descriptive Cohort Study.

Early supported discharge (ESD) facilitates early discharge from acute hospitals with continued rehabilitation in the home environment from a multi-disciplinary team at the same intensity as would be received in the inpatient setting. Emerging evidence suggests it can have a positive impact on the care of older adults on discharge from the acute hospital setting to home. This study aims to characterize an inreach model of ESD for older adults discharged from four hospitals in the Mid-West of Ireland and describe its impact on clinical and process outcomes at 30 and 180 days. Consecutive older adults referred for ESD from four hospitals were recruited over six-months. Baseline assessments were carried out on initial review, and patients were followed up at 30 and 180 days by an independent outcome assessor. Outcomes measured include functional status, frailty, health related quality of life, mortality, and healthcare utilization. One hundred and thirty older adults (mean age 76.62 years, SD 9.81 years) were recruited, 44 for surgical complaints and 86 for medical complaints. The ESD service was provided over a median of 31 (medical) - 44 (surgical) days, primarily by physiotherapy and occupational therapy. The incidence of functional decline was 16.41% at 30 days and 27.5% at 180 days. There was a significant improvement in the self-reported function from index visit 72.94 (19.50) mean standard deviation (SD) to 30 days 84.05 (21.08) mean (SD) which was maintained at 180 days 80.53 (30.93) mean (SD). Frailty was independently associated with incidence of functional decline at 30 days (OR 2.06, 95% CI 1.39 to 3.06) and 180 days (OR 1.7, 95% CI 1.29 to 2.24). An ESD model of care can have significant effects on patient outcomes for older adults admitted to hospital at 30 and 180 days, without increasing the risk of unscheduled Emergency Department re-presentation. Future research should explore the impact of an ESD model of care on specific older adult cohorts.

Quality of life among patients with systemic lupus erythematosus in Karbala Governorate

Background: Systemic lupus erythematosus (SLE) is an autoimmune disease with a variety of clinical symptoms that primarily affect women of childbearing age causing a significant patient burden. Objectives: To assess health-related quality of life (HRQOL) among patients with SLE and to evaluate its association with different sociodemographic and clinical characteristics of SLE patients. Patients and methods: Seventy five patients with SLE who attended the rheumatology outpatient clinics of Imam Al-Hassan Al-Mujtaba Teaching Hospital, were enrolled in a cross-sectional study. Lupus quality of life (LupusQoL) was used to assess disease-specific health related quality of life; and SLE disease activity index (SLEDAI) was applied to evaluate disease activity. Results: The mean age of the studied patients was 38.12±11.70 years and were 97.3% female. All LupusQoL domains were reduced. Intimate relationship accounted for the highest QoL score with a median of 50, and IQR of 25-100, whereas fatigue represented the lowest score with a median of 25, and IQR of 6.2-50. LupusQoL was positively correlated to address, education, disease duration, occupation, and impact on job especially in physical health domain with r equal (0.277, 0.342, 0.137, 0.240, 0.314respectively). LupusQol was negatively correlated with age (r= -0.461), and with disease activity (r= -0.292), with p- values of all were &gt;0.05. Renal and neuropsychiatric involvement of the disease did not statistically correlate with HRQOL. Conclusion: patients with SLE had low scores of all LupusQoL domains. There was significant positive correlation between LupusQoL domains and address, education, disease duration, occupation, and impact on job and significant negative correlation with age, and disease activity. Key words: SLE, health related quality of life, LupusQoL

Hen’s egg white allergy in adults leading to strong impairment of quality of life

In adulthood, hen’s egg white allergy (EWA) is a rare condition and rising in prevalence. Typically, EWA begins in early childhood and resolves at school age. Persistence into adulthood or newly onset of the allergy has been reported, but scientific data is scarce. Symptoms reach from typical gastrointestinal problems to severe systemic reactions. EWA and the fear of allergic reactions lead to drastic restrictions in diet as in social life of the affected individuals. This study aims to assess health related quality of life (HRQoL) in adults with EWA using the validated questionnaire “Food Allergy Quality of Life Questionnaire - adult form (FAQoLQ-AF)” and Food Allergy Independent Measure (FAIM). Between July 2023 and October 2023, 16 adults with hen’s egg white allergy were identified and questioned using the FAQoLQ-AF to evaluate HRQoL. Patients’ characteristics were obtained including age at allergy onset and the most severe allergic symptom. The results were summarized using descriptive statistical analysis. HRQoL was impaired in 16/16 allergic individuals with an overall mean score of 4.64/7 (SD 1.3). Self-assessed emotional impact of the EWA was more problematic than food allergy related health. Food Allergy Independence Measure (FAIM) mean score was 4.64 (SD 1.0) with highest result in product avoidance. The most frequent occurring symptoms were oral allergy syndrome and stomach pain in 7 (44%) patients each. This study shows impaired HRQoL in a small cohort of adults with hen’s egg white allergy using the FAQoLQ and FAIM questionnaire with special emphasis on emotional impact. We identified an urgent need for correct food labelling and research into safe treatment options to improve HRQoL.

Comprehending self-compassion manifestations and their relationships among adults diagnosed with ADHD: A foundation for recovery-based interventions

Background: Enhancing self-compassion ( SC) was found to enhance Quality of Life ( QoL). There is a need to comprehend SC manifestations among adults with attention deficit hyperactivity disorder (ADHD) who experience low QoL to provide a foundation for Recovery-based interventions aiming to enhance SC and QoL among adults with ADHD. Objective: To explore SC manifestations and their relationships with ADHD symptoms and ADHD related QoL. Methods: A cross-sectional survey used self-rated questionnaires for ADHD symptoms, QoL and SC among 32 adults with ADHD, recruited by a volunteer community sampling. Results: Moderate overall SC was noted. Negative SC means were found to be higher than the positive SC means. The positive SC subscale common humanity had the lowest mean while the negative SC subscale overidentification had the highest mean. Overall SC level was found to significantly contribute to ADHD symptoms in predicting QoL variance. Overidentification was found to be a significant partial mediator between ADHD symptoms and QoL. Conclusion: Recovery-based interventions aiming to decrease the tendency of adults with ADHD to overidentify with their negative thoughts and feelings and to enhance their realization that their difficulties are shared by others, may have the potential to enhance SC and QoL.

Health-related quality of life in children with bronchopulmonary dysplasia: examining agreement between child self-report and parent proxy.

In school-aged children with BPD, agreement between parents and children on HRQL scales is poor to moderate. Caregivers are biased towards lower HRQL. When possible, HRQL should be assessed in the patient directly. • Children with chronic respiratory diseases often assess their own health related quality of life different than their caregiver would report for the child. • Recent data suggests that parent reported health related quality of life for children with BPD is similar to the normal population. • There is a consistent bias for parents to report worse health related quality of life on the Patient Reported Outcomes Measurement Information System (PROMIS) standardized assessment than their school-aged children with BPD.

Assessment of Oral Health-related Quality of Life among Adults in Kolkata, West Bengal, India

Background: Oral diseases are thought to produce a negative impact on the quality of life of an individual. It is well-documented now a days that the patient's perception should be familiarized while evaluating oral diseases and the respective treatment measures. Hence, it is imperative to assess the oral health-related quality of life (OHRQoL) that serves to be a vital indicator of the required intervention outcomes in modern-day oral health research and practice. Aim: To assess the OHRQoL among the individuals reporting to the OPD of department of oral pathology&amp; microbiology at Kusum Devi Sunderlal Dugar Jain Dental College &amp; Hospital, Kolkata. Methodology: A cross-sectional study was performed on 600 subjects with age more than 30 years were in good physical and mental health condition. OHIP-14 was used for surveys of 7 dimensions of impact i.e. functional limitation, physical pain, psychological discomfort, physical disability, psychological disability, social disability and handicap. Results: The mean age of the patient’s group was 44.57+12.62. Mean OHI-14 score of the surveyed population was 7.095+10.53. There was insignificant difference in mean ohip-14 score among males and females (P= 0.435). Oral health related quality of life was found to have positive correlation with age (R = 0.362; P&lt; 0.0001). Conclusion: Further research with appropriate sample size should be undertaken to emphasize on OHRQoL in the treatment procedure to facilitate in proper planning and evaluating the outcomes that is best suitable for the patient.

Comparing outcomes for single-segment vertebral column decancellation performed at different vertebras in ankylosing spondylitis-an observational study

BackgroundThe surgical procedure of vertebral column decancellation (VCD) has been increasingly performed in orthopaedic surgery for those with spinal deformity. To investigate the results of single-segment VCD performed at different vertebra for correcting thoracolumbar kyphosis in ankylosing spondylitis (AS) and to guide the osteotomy strategy.MethodsEighty-six AS patients (77 males, 9 females) having thoracolumbar kyphosis underwent single-segment VCD (ranging from T12 to L3) between January 2016 and September 2019 were enrolled and divided into four groups according to the osteotomy vertebra: T12 in 9 cases (Group A), L1 in 15 cases (Group B), L2 in 47 cases (Group C), and L3 in 15 cases (Group D). Demographics, operational data, radiological and clinical data were compared among the four groups.ResultsAll patients had significant improvements in spinopelvic alignments and health-related quality of life after correction surgeries. Having the similar demographics, patients in the group C obtained the maximum local kyphosis and global kyphosis correction of 45.05° ± 9.07° (P < 0.001) and 43.42° ± 11.24° (P < 0.001) respectively. However, those in the group A had the largest correction in thoracic kyphosis (41.88° ± 9.57°) and chin-brow vertical angle (24.74° ± 6.38°) respectively (P < 0.001). Moreover, the VCD of L2 or L3 would result in much larger correction in lumbar lordosis and sagittal vertical axis than those in the group A and B respectively (P < 0.001), patients in the group A and B suffered from much higher incidence of complications perioperatively although (P = 0.043).ConclusionSingle-segment VCD performed among thoracolumbar segments can effectively restore spinopelvic alignments and improve the health related quality of life for AS patients with thoracolumbar kyphosis deformity. Moreover, L2 may be the optimal osteotomy vertebra for those patients.Trial registrationClinical trial number: not applicable.Level of evidenceIII, therapeutic study.

AHP SO07 - Dietetic Outpatient Service to Patients undergoing Oesophagogastric (OG) Surgery for Cancer

Abstract Background Nutrition is a modifiable risk factor impacting surgical outcomes in OG cancer. Its key role influencing health related quality of life is emerging with improved survivorship. Guidelines depicting optimal timing and type of dietetic intervention for this patient group are unclear. In order to best direct dietetic care, optimise timing of nutritional interventions and understand demand for service it is important to reflect on current provision. This audit aimed to describe the dietetic outpatient service to patients undergoing OG Surgery for cancer in a national centre for treatment of oesophageal cancer. Method A retrospective review of dietetic records and statistics. Patients who underwent oesophagectomy (O), gastrectomy (G) or subtotal gastrectomy (STG) for cancer between May 2022- May 2023 were included. Results 63 patients were included: 38 O, 17 TG, 8 STG. 11 were seen by the dietitian at first visit to OG Clinic (9 O, 1 TG, 1 STG) – 6 had an elective feeding tube (FT) inserted for neoadjuvant treatment (5 O, 1 STG). 83% attended a surgical pre-assessment dietetic appointment (36 O, 14 TG, 2 STG). 86% were reviewed within 1 month post O or TG, 75% post STG. 258 dietetic interventions occurred in the first year post-op (median 3.5, range 0-14). 64% in the first 3 months(m) post op, 16% at 3-6m, 10% at 6-9m, 10% at 9-12m. Conclusion In this high nutritional risk group only 18% are assessed by a dietitian at first visit to UGI MDT clinic. There is a successful pathway for immediate peri-operative dietetic care in patients post O and TG. The pathway for STG is less well established. Dietetic interventions are concentrated in the first 3 months after surgery. There is no established protocol to support longer term nutritional needs into survivorship. To inform practice a measure of patient experience and needs would be useful, to explore best delivery format and access routes to future services.

Abstract 4117927: Prevalence of Obstructive Sleep Apnea Among Consecutive Patients with Atrial Fibrillation Using WatchPAT Home Sleep Testing: A Prospective Cohort Study

Background: Atrial fibrillation (AF) is the most common arrhythmia encountered in clinical practice and is associated with significant morbidity, mortality, and health system costs. Obstructive sleep apnea (OSA) is a highly prevalent condition affecting more than one third of the global adult population and, among patients with comorbid AF, contributes to poor AF related quality of life. However, the prevalence of undiagnosed OSA in the general AF population is unknown. Methods: In this pragmatic, phase IV prospective cohort study, we performed sleep testing on consecutively enrolled ambulatory AF patients for OSA using a cloud-based disposable home sleep test (the WatchPAT system). The primary outcome of our study was the prevalence of undiagnosed mild (5≤AHI&lt;15) or moderate/severe (AHI≥15) OSA in the general AF population. A prespecified power analysis supports 80% power to detect a &lt;5% difference in OSA prevalence compared to the general population (defined by AHI cut-offs of ≥5 or ≥15). Results: We performed sleep testing in 180 AF patients. Enrollment concluded early after a prespecified interim power analysis showed a larger than predicted difference of OSA prevalence between AF patients and the general population. Among the patients tested, 126 (70.4%) had paroxysmal AF, and 53 (29.6%) had persistent/long standing persistent AF. None had previous sleep testing. Our results show that the prevalence of OSA was 83.3% by AHI≥5 and 47.2% had moderate/severe OSA (AHI≥15). Patients with persistent or long standing persistent AF demonstrated even higher rates of OSA with 51 (96.3%) testing positive for OSA (AHI≥5) and 35 (64.2%) with moderate/severe OSA (AHI≥15). Conversely, standardized OSA screening instruments (Stop-BANG questionnaire or Epworth Sleepiness Scale) were poorly predictive of OSA in AF patients (AUC 0.66 and AUC 0.44, respectively). Conclusions: Undiagnosed OSA is highly prevalent in the general AF population. Our results demonstrate that OSA prevalence in AF patients exceeds that in the general population with a high degree of confidence. Widely used clinical prediction instruments cannot effectively be used to guide sleep testing decisions in AF patients. Our results suggest routine OSA testing should be performed in the comprehensive evaluation of all AF patients.

Short-course subcutaneous treatment with birch pollen allergoids greatly improves symptom and medication scores in birch allergy.

Subcutaneous immunotherapy has emerged as an effective option for treating allergic diseases. Here, we assessed the clinical impact of the mannan-conjugated birch pollen polymerized allergoid T502 in birch pollen-induced allergic rhinoconjunctivitis. In this prospective, randomized, double-blind placebo-controlled phase III trial, 298 birch pollen-allergic adult patients were treated across 28 trial sites in Germany. Patients received either placebo or 23,000 mTU T502 subcutaneously over five pre-seasonal visits. Efficacy was assessed by comparing the combined symptom and medication score (CSMS) between placebo and T502 during the peak birch pollen season 2022. Safety, tolerability and immunologic effects were also analyzed. During the peak birch pollen season, the median CSMS of the T502 group was reduced by 33% (p = 0.002) compared to placebo. The median daily symptom score and daily medication score were reduced by 30.4% (p < 0.001) and 56.3% (p = 0.045), respectively. Health related quality of life improved as reflected by reduction of RQLQ values by 31.5% (p < 0.0001). Production of Bet v 1 sIgG4 and Bet v 1 sIgG increased up to 6.2-fold and 3-fold respectively in the T502 group (p < 0.0001). The sIgE/sIgG4 ratio was strongly reduced in the T502 group at V7 (-62.9%, p < 0.0001). No fatalities nor serious adverse events were reported. In total, 16 systemic allergic reactions occurred (Grade I/II). Treatment with T502 significantly reduced symptoms and medication need in rhinoconjunctivitis patients. The treatment is well tolerated and safe.

When fatigue and cognitive impairment persist- a neurological follow-up-study in patients with Post-COVID syndrome

Considering the relevance for patients, economics and public health data about the course of the neurological Post-COVID Syndrome (PCS) are urgently needed. In this study 94 PCS patients (73% female, age in median 49 years) were examined in median 9.4 (T1) and for a second time 14 months (T2) after mild to moderate SARS-CoV-2 infection. Mood, sleep quality and health related quality of life (QoL) were evaluated via structured anamnesis and self-report questionnaires; attention, concentration and memory via psychometric tests. 47% of the patients reported an improvement of their symptoms over time, but only 12% full recovery. 4% noticed deterioration and 49% no change. Main disturbances at both time points were fatigue, deficits in concentration and memory. In patients with perceived improvement QoL significantly increased between T1 and T2, although their test performance as well as the fatigue score remained unchanged. In patients with persisting impairment QoL, fatigue scores and psychometric test results did not change significantly. Abnormal psychometric tests were more frequent at both time points in the group without improvement. But, significant fatigue and cognitive impairment persisted for more than 1 year after SARS-CoV-2 infection in both groups.

Reliability and Validity of the Turkish Version of the Deglutition Handicap Index.

The Deglutition Handicap Index (DHI) is a self-reported questionnaire focus on dysphagia related quality of life of patients. The present study was aimed to translate the DHI into Turkish, and investigate the reliability and validity of the Turkish version of the DHI (T-DHI). A total of 100 patients with different diagnoses participated. The study was carried out in 3 phases including translation, reliability and validation phases. The translation phase was performed by the forward-backward-forward translation methodology. The internal consistency and test-retest reliability were used for reliability phase. The criterion validity of the T-DHI was investigated for validation phase. The Cronbach's alpha value of the T-DHI was 0.93 of which indicates excellent internal consistency. The Intraclass Correlation Coefficient ranged from 0.96 to 0.99 for test-retest reliability. There was negative and weak correlation between functional subscale score from the T-DHI and the Functional Oral Intake Scale (r=-0.29, p = 0.004), and positive and moderate to strong correlations between total and subscale scores from the T-DHI and the Turkish version of the Eating Assessment Tool (r = 0.67-0.78, p < 0.001) indicating sufficient criterion validity. The T-DHI is a reliable and valid questionnaire to define dysphagia related quality of life of patients. Clinicians could be used the T-DHI during swallowing evaluation part during the management process of deglutition disorders to plan patient centered rehabilitation, improve care and follow up.

How Do Surgical Interventions for Neurogenic Lower Urinary Tract Dysfunction Impact Quality of Life?

Adult patients with neurogenic lower urinary tract dysfunction (NLUTD) often have urinary symptoms that impact their quality of life (QOL). Our objective is to identify and summarize studies evaluating QOL changes across different NLUTD surgical interventions. A systematic rapid evidence review was carried using EMBASE and MEDLINE. We included adult patients (> 18 years old) with NLUTD who underwent a relevant surgery and had a measurement of QOL. We included pre-post study designs (primary focus) and cross-sectional studies (secondary focus). Studies were reviewed and data extracted by multiple assessors. Standardized data extraction tables were used, and qualitative synthesis was performed. Of the 1074 screened articles 26 were included. There were 3/15 studies that evaluated reconstructive surgery (augmentation and/or catheterisable channel) pre-post intervention (n = 94 patients); there was a 7%-28% relative improvement in bladder related and overall QOL using validated questionnaires, and a large magnitude of improvement in studies using unvalidated questionnaires. There were 3/7 studies that looked at urinary diversion pre-post intervention (n = 153 patients) and showed an approximately 20%-60% improvement in validated questionnaires assessing bladder specific quality of life, and 0%-25% improvement in overall quality of life. Finally, 3/4 studies were pre-post stress incontinence surgeries (n = 67 patients) and they found an improvement in the ICIQ questionnaire scores and study-specific questionnaires. The literature supporting a change in QOL in adult NLUTD patients undergoing surgical interventions is extremely limited due to a lack of pre-post studies, and the frequent use of unvalidated outcome measures.

Health Related Quality of Life in Transfusion Dependent Patients with Beta Thalassemia at a Resource Constrained Center

Background: Beta Thalassemia is a prevalent genetic disorder of hemoglobin affecting a significant portion of the global population with approximately 3% of people worldwide being carrier of the gene. About 5% of the population in Pakistan carry the genes for Beta Thalassemia, leading to approximately 5,000 new diagnoses each year. Majority of the patients are treated with regular red blood cell transfusions combined with iron chelation, few being able to afford definitive treatment in the form of allogeneic bone marrow transplant (BMT). Due to high disease burden and lack of adequate health care facilities the patients get inadequate blood transfusions and suboptimum iron chelation leading to numerous complications, early death and quality of life (QoL) problems. Objective: To evaluate health related quality of life in transfusion dependent beta Thalassemia patients registered at a single center Study Design: Cross sectional observational study Place and duration of the study: The study was conducted on patients treated at Pakistan Thalassemia Welfare Society (Pathwel) Center of Hematology and BMT Rawalpindi, Pakistan for at least one year between January 2006 to June 2024. Methodology: We evaluated 136 patients of transfusion dependent beta thalassemia with age range of 2-35 years and registered for more than 1 year at the center. Patients with age less than 2 years, those receiving hydroxyurea, undergoing BMT or registered for less than 1 year were excluded from the study. A face to face interview with structured questionnaire was used for data collection. Caregivers were interviewed for children of less than 10 years of age. Modified version of World Health Organization Quality of Life Brief Version (WHOQoL-BREF) questionnaire assessing 4 domains of QoL i.e. physical health, psychological health, social health and environment was used. IBM SPSS statistics version 23 was used for statistical analysis. Results: The estimation of health-related quality of life (HRQoL) in beta thalassemia patients provides important insights in the disease and its management. Majority of the responders were patients themselves 52.2% vs. caregivers 47.8%. All the 136 patients were transfusion dependent, 52.2% were female, 47.8% male, 84.6% were children and 15.4% adults. Mean age of the patients was 10.72 years (range 2-35, SD = 6.85).Out of 120 school-going age patients 68.3% were attending school, 22.5% had never been to any school, 9.1% left education at some point due to health related problems. Forty one percent of the patients had access to public transport for coming to thalassemia center for treatment while 39% faced difficulty reaching hospital and used private taxis. Only 58% patients underwent regular medical checkup from their GPs, 3.7% had irregular follow up visits. Socioeconomic status was; 39% upper middle class, 39.7% lower middle class and 21.3% poor. About half of the patient's socioeconomic status was affected by their disease, 46.3% did not had any effect while 3.7% were unaware of any effect. Forty five percent patients needed once a month red cell transfusion, 38.2% twice a month and 16.9% more than twice a month. According to 69.1% responders blood at the center was easily available while 28.7% had difficulty in getting blood for transfusion. Majority of them had either Rh negative blood groups or preformed antibodies. Mean pre-transfusion hemoglobin was 7.3 g/dl (SD=1.2).Hepatitis B Vaccination status revealed; 83.1% vaccinated, 8.1% not vaccinated while 8.8% were unaware of their vaccination status. Hepatitis C positivity was seen in 25% of the patients at some point of life while 2.2% were positive for hepatitis B. Eight out of the 23 patients with transfusion requirement more than twice a month had positivity for hepatitis C. Conclusion: This study underscored the considerable negative impact of thalassemia and its treatment on health-related quality of life (HRQoL), particularly due to comorbidities, availability of the blood, low income and lack of adequate knowledge about the disease. It suggests that adjusting current thalassemia management and care practices could be beneficial. Implementing psychosocial and counseling programs could help patients discuss and accept their condition, support a normal lifestyle, and strengthen connectivity among patients, schools, families, and healthcare providers leading to improved HRQoL and academic performance.