Significant Quality Of Life Impairment Research Articles

An Observational Study on Female Genital Dermatoses and the Impact of Chronic Genital Dermatoses on Quality of Life in Adult Females

Abstract Background: Female genital dermatoses (FGD) or vulvar dermatoses are a group of disorders that affect the vulva and contiguous parts. Most of the FGDs can be chronic or recurrent. Effects on Quality of life (QoL) in patients having dermatological conditions are well studied but this is not the case in vulvar dermatoses. Aims: We aimed to study the etiology of genital dermatoses in females attending the Dermatology Out Patient Department (OPD) and to assess QoL in females with chronic FGD (>6 weeks duration). Settings and Design: This was an observational study on female patients with vulvar complaints presenting to dermatology OPD. Both venereal and nonvenereal dermatoses were enrolled. QoL was assessed in females with chronic FGD using a self-administered Dermatological Life Quality Index (DLQI) questionnaire. Statistical Analysis: Sample size was calculated using the formula JOURNAL/ijod/04.03/00076423-202409000-00004/inline-graphic1/v/2024-10-29T111745Z/r/image-tiff Categorical variables were presented as numbers and percentages (%) and continuous variables were presented as mean ± standard deviation (SD) and median. The normality of the data was tested by the Kolmogorov-Smirnov test or non-parametric test. A t-test was used for the estimation of the mean. Results: Ninety-seven patients were included in our study; Vulvovaginal candidiasis was the most common dermatoses (22.6%); Lichen simplex chronicus (11.3%) the commonest non-venereal dermatoses. 57 (58.7%) had chronic FGD, among whom 43 (75.4%) had significant QoL impairment. Conclusions: Infectious etiologies predominated. There was significant impairment in QoL in females with chronic FGD.

Characterization of cells and mediators associated with pruritus in primary cutaneous T-cell lymphomas

Patients with primary cutaneous T-cell lymphoma (CTCL) often experience severe and difficult-to-treat pruritus that negatively affects their quality of life (QoL). However, the mechanisms of pruritus in CTCL, including mycosis fungoides (MF), remain largely unknown, and detailed characteristics of CTCL-associated pruritus is not fully elucidated. To characterize pruritus in CTCL, cutaneous B-cell lymphoma (CBCL), and large plaque parapsoriasis (LPP), and to identify potential itch mediators involved in the pathogenesis of pruritus in CTCL patients. Clinical data and blood samples were collected from 129 healthy subjects and 142 patients. Itch intensity, QoL impairment, psychological distress, and sleep quality were assessed using validated questionnaires and instruments. Blood levels of BDNF, CCL24, GRP, IL-31, IL-33, sST2, substance P, TSLP, tryptase and total IgE were measured using ELISA or ImmunoCAP. Pruritus was prevalent in CTCL, LPP and CBCL patients, with higher prevalence and severity observed in CTCL. In CTCL, pruritus correlated with significant impairment in QoL, sleep, psychological distress. Compared to healthy controls, elevated levels of IL-31, IL-33, substance P, total IgE, tryptase, and TSLP were found in MF patients. A comparison of MF patients with and without pruritus revealed higher levels of IL-31, substance P, GRP, and CCL24 in the former. Itch intensity positively correlated with IL-31, GRP, CCL24, and tryptase levels. Pruritus significantly burdens CTCL patients, necessitating appropriate therapeutic management. Our findings suggest that various non-histaminergic mediators such as tryptase and IL-31 could be explored as novel therapeutic targets for managing pruritus in MF patients.

EFFECTIVENESS, OUTCOME, AND SAFETY OF VITAMIN D SUPPLEMENTATION IN PATIENTS WITH PSORIASIS: A COMPREHENSIVE SYSTEMATIC REVIEW

Background: Insights into psoriasis as a systemic ailment have spurred the investigation of novel therapies due to dissatisfaction with current treatments and significant quality of life impairment. Vitamin D3 deficiency is implicated in psoriasis pathophysiology, with studies highlighting its impact on keratinocyte regulation and autoimmune disease resistance. This review critically evaluates evidence on high-dose oral vitamin D3 supplementation for psoriasis management, aiming to assess its effectiveness, treatment outcomes, and safety profile to inform clinician. Methods: This systematic review focused on full-text English literature published between 2017 and 2024 using the PRISMA 2020 guidelines. Editorials and review pieces published in the same journal as the submission without a DOI were not accepted. The literature was compiled using PubMed, ScienceDirect, and SagePub, among other online venues. Result: Our research team initially collected numerous publications from credible sources such as Science Direct, PubMed, and JAMA Dermatology. Employing a meticulous three-tier screening approach, we identified only five papers that were directly pertinent to our ongoing systematic assessment. Subsequently, we conducted a comprehensive examination of the entire text and further selected articles; case control study, double-blind, randomized, placebo-controlled study, randomized controlled trial, a bidirectional two-sample mendelian randomization analysis, and observational cross-sectional study. Conclusion: In conclusion, maintaining serum vitamin D levels above 30 ng/ml may benefit severe psoriasis, while oral vitamin D2 supplementation showed promise in mild cases. Larger trials are needed for severe psoriasis, and future research should explore higher doses. Additionally, a study found no support for monthly vitamin D3 supplementation in older mild psoriasis patients. We confirmed the causal link between vitamin D levels and psoriasis, identified associations with increased risk, and explored effects on atopic dermatitis. While no significant difference was found in serum vitamin D levels between psoriasis patients and controls, lower levels in psoriasis suggest various influences.

Perspectives from patients with chronic lung disease on a telehealth-facilitated integrated palliative care model: a qualitative content analysis study

BackgroundChronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing.MethodsFor this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach.ResultsWe completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care.ConclusionsThese findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model.

Epidemiologic Disparities and Challenges in Non-parkinsonian Tremor Disorders Research: A Scoping Review Emphasizing the Indian Context.

Non-parkinsonian tremors represent a heterogeneous spectrum of movement disorders where knowledge gaps persist regarding epidemiology, pathophysiology, and clinical burden. This scoping review aimed to systematically consolidate literature on these disorders in India across the domains of prevalence, biological mechanisms, psychiatric comorbidity, disability impact, and quality of life. A systematic search was undertaken across databases to identify studies on non-parkinsonian tremors in India. Extracted data were synthesized descriptively under themes spanning reported prevalence estimates and variability, proposed biological processes, psychiatric symptom rates, stigma perceptions, and quality-of-life deficits. Methodological appraisal was undertaken. Twenty-nine studies reported prevalence estimates displaying wide variability from 0.09% to 22% for essential tremor, partly attributable to definitional inconsistencies. Proposed pathologic processes centered on cerebellar dysfunction, neurotransmitter disturbances, and genetic risks. Nine studies revealed variable anxiety (6.8%-90%) and depression (3.4%-60%) rates among essential tremor patients, while two indicated perceived stigma. Five studies unanimously concurred significant quality of life impairment in essential tremors. Evidence of dystonic tremor, functional tremor, and other tremors was limited. This review exposed critical knowledge gaps and methodological limitations, while systematically evaluating the Indian literature on non-parkinsonian tremors concerning epidemiology, mechanisms, and clinical burden. Large-scale collaborative research applying standardized diagnostic criteria is imperative to determine contemporary prevalence statistics and comprehensively characterize the multifaceted disability footprint to inform patient-centric models optimizing diagnosis and holistic care.

Cardiopulmonary Functions and Quality of Life in Patients with Pulmonary Tuberculosis: A Cross-sectional Study from Pune, Maharashtra, India

Introduction: Pulmonary Tuberculosis (PTB) treatment can improve health, but patients may experience sequelae of cardiopulmonary complications. PTB can contribute to complications in the cardiovascular system, including abnormal Electrocardiogram (ECG) readings, and the pulmonary system can be damaged, leading to reduced lung capacity and difficulty in breathing. It may cause a combined impact on Quality of Life (QoL). Understanding this is crucial for optimising patient care and identifying potential complications early. Aim: To assess cardiopulmonary functions and QoL in patients undergoing PTB treatment. Materials and Methods: This cross-sectional study was conducted at a tertiary care hospital in Pune, Maharashtra, India from August 2019 to October 2019. Total of 32 patients (20-50 years old) receiving PTB treatment for six months were included. Haematological tests and Chest X-ray (CXR) were conducted, and QoL was measured using the St. George’s Respiratory Questionnaire (SGRQ). Exercise capacity was evaluated by measuring Oxygen Saturation (SpO2 ) before and after the 6-Minute Walk Test (6MWT). Results: In this study, anaemia was prevalent in 24 patients (75%). ECG abnormalities were detected in 20 (62.5%) patients, and Echocardiography (ECHO) revealed Pulmonary Arterial Hypertension (PAH) in 2 (6.25%) patients. Exercise capacity, measured by a 6MWT, decreased SpO2 in most patients 27 (84.37%), with a greater decline in females and older individuals. All patients reported significant QoL impairment, with worse activity scores in males. Conclusion: PTB treatment may impact cardiovascular function and QoL. Regular screening for complications and potentially tailored treatment plans are warranted for PTB patients.

1026 Severe Sleep Inertia Managed with Bupropion

Abstract Introduction Severe sleep inertia (SI) can often be managed with behavioral modifications and stimulants. This patient’s sleep inertia was resistant to such therapies but had remarkable improvement with Bupropion. Report of case(s) An 11-year-old male with a history of seizures presented with hypersomnolence, SI and difficulty arousing in the morning for 3 years. There was no reported cataplexy, with occasional hypnogogic hallucinations and sleep paralysis. Family denied witnessed apneas or snoring. He had previously undergone an adenotonsillectomy at 6 years of age for obstructive sleep apnea. When initially seen, he was not taking antiseizure medications, Epworth score was 14 and BMI was 30.5 kg/m2. Polysomnogram showed an AHI of 1.5 events/hour with REM latency of 179.5 minutes. Multiple sleep latency testing showed a mean sleep latency of 4 minutes, 7 seconds with 3 SOREM periods: consistent with narcolepsy. Melatonin and methylphenidate were initially prescribed, followed by dextroamphetamine-amphetamine, but were discontinued due to worsening hypersomnolence. Armodafinil improved his overall daytime sleepiness, however, severe SI persisted intermittently in the morning and with naps to the point of EMS being called on multiple occasions. EEG and brain-MRI were normal. For suspected cataplexy, venlafaxine was tried and not beneficial. Calcium-magnesium-potassium and sodium oxybate (XW) lead to no improvement in his SI. Therefore, Methylphenidate-20mg (MP) and then Armodafinil-50mg were added before bedtime, however, his SI persisted with frequently missed school. Bedtime Bupropion 150 mg was added with an immediate response. He has not missed school or daytime activities with Bupropion. Conclusion Sleep inertia is typically a characteristic of idiopathic hypersomnia rather than narcolepsy and is related to the abnormal transition of sleep to wakefulness resulting in reduced alertness, impaired performance, and desire to return to sleep. Such pronounced sleep inertia is atypical and caused significant quality of life impairment in our patient. Nighttime melatonin, XW, MP, and bupropion for SI has been described in the literature1. Our patient failed multiple treatments before bupropion which was immediately successful. Support (if any) 1. Treatment of severe morning sleep inertia with bedtime long-acting bupropion and/or long-acting methylphenidate in a series of 4 patients. Schenck, MD1 ; Golden, MD2 ; Millman, MD3

Influence of thyroid hormones and effect of treatment choice on the quality of life of hyperthyroid patients.

Objective: To evaluate the influence of thyroid hormones as well as the effect of treatment choice on the quality of life of patients visiting / admitted in tertiary healthcare centers in Karachi, Sindh Pakistan. Study Design: Cross-sectional study. Setting: Rafae Aam General Hospital Federal Area Karachi, Sindh, Pakistan. Period: March 2022 to June 2022. Material & Methods: Patient’s data related to their socio-demographic and clinical details was collected by using a pre-tested written questionnaire. Brazilian version of 36-Item Short Form Health Survey questionnaire was completed by all the study participants. Results: Total 337 participants were included in the study. Mean age of the study participants was 34.03 ± 10.06. Majority of them were females while most of them belonged to the age group of 18-29 years. Most of our study participants were urban residents, married, having no any formal education and suffering from comorbidities. Based on clinical examination, 272 (80.7%) patients were found euthyroidism while 65 (19.3%) were hyperthyroid. Thus, hyperthyroid patients displayed a greater toll on the quality of life, particularly in areas of physical (59.62 vs. 82.81; p<0.05) as well as emotional (61.54 vs. 82.81; p<0.05) functioning. Conclusion: This study concludes that hyperthyroid patients have a significant quality of life impairment, particularly in the physical and emotional domains. Moreover, regardless of the findings of the serum thyroid hormone levels, quality of life of hyperthyroid patients is compromised.

Prevalence and associated factors of disorders of gut-brain interaction in the United States: Comparison of two nationwide Internet surveys.

No comprehensive assessment of disorders of gut-brain interaction (DGBI) in the United States (US) national population has been published in the past three decades. We aimed to provide an updated picture of DGBI in the United States and associated factors, using data from two national Internet surveys. Data were analyzed from 1949 people surveyed in 2015, and 2023 people surveyed in 2017 as a part of the Rome Foundation Global Epidemiology Study (RFGES). The surveys had nearly identical methodology and included the Rome IV Diagnostic Questionnaire and questions on demographics, quality of life (QoL), emotional symptoms, and healthcare utilization. The prevalence of having any DGBI was 36.0% and 39.9% in the two surveys. Prevalence estimates for the 22 DGBI assessed were broadly comparable between the surveys, as their 95% confidence intervals overlapped for every disorder. Females had DGBI more commonly than males in both surveys (odds ratios 1.66 and 1.52), and people of age 65 and older had lower DGBI prevalence than younger age groups. Having DGBI was associated in both surveys with significant QoL impairment, elevated anxiety, depression and somatization symptoms, and increased doctor visits. Approximately 4 out of every 10 US adults have a DGBI; more commonly women and people under the age of 65. DGBI adversely affect QoL and emotional well-being and increase healthcare needs. The similarity of findings between the two surveys supports the reliability of DGBI prevalence estimates obtained with the Internet survey method used globally in the RFGES.

Longitudinal Patient-Reported Outcomes in Patients Receiving Chimeric Antigen Receptor (CAR) T-Cell Therapy

Background: CAR T-cell therapy is a novel treatment for patients with hematologic malignancies that carries risk of unique toxicities such as cytokine release syndrome (CRS) and immune effector cell-associated neurologic toxicity (ICANS). Patients are at risk for quality of life (QOL) deterioration and immense physical and psychological symptom burden given these toxicities, their illness, and the need for a prolonged hospitalization. Yet, data that comprehensively depict the longitudinal patient-reported outcomes (PROs) of patients receiving CAR T-cell therapy are limited. Methods: We conducted a longitudinal cohort study of 100 consecutive adult patients with hematologic malignancies receiving CAR T-cell therapy at Massachusetts General Hospital (MGH) between 4/2019 and 11/2021. Patients completed baseline questionnaires prior to receipt of CAR T-cell therapy about sociodemographic data, QOL (Functional Assessment of Cancer Therapy-General), physical symptoms (Edmonton Symptom Assessment Survey-revised [ESAS-r]), and psychological distress (Hospital Anxiety and Depression Scale and Post-Traumatic Stress Checklist) and completed PRO questionnaires at 1 week, 1 month, 3 months, and 6 months after CAR T-cell infusion. We used descriptive statistics to summarize patient characteristics and PROs at each timepoint and rates of clinically significant depression, anxiety, and post-traumatic stress disorder (PTSD) based on establish cutoffs. We conducted paired t-tests analyzing changes in QOL, physical, and psychological symptoms from baseline to 1 week, 3 months, and 6 months. We used multivariable linear regression models to examine factors associated with QOL at three months after CAR T-cell infusion. Results: We enrolled 71.4% (100/140) of eligible patients (median age 66 years; 63% male sex; 77% married/living with partner). The most common diagnosis was lymphoma (71%) followed by multiple myeloma (28%); A plurality (34%) received tisagenlecleucel, followed by lisocabtagene maraleucel (16%), axicabtagene ciloleucel (13%), and idecabtagene vicleucel (12%). The overall response rate was 80%, and with a median follow up of 14 months after CAR T-cell infusion, 38% died. CRS and ICANS occurred in 76% and 33% of patients, respectively. At baseline, median QOL score was 77.9 (range: 34-107), and was 70.0 (35-107) at 1 week, 76.0 (46-106) at 1 month, 83.5 (29-108) at 3 months, and 83.7 (34-107) at 6 months. Severe physical symptoms (ESAS-r score >=7) were reported by 47%, 52%, 35%, 28%, and 28% of patients at baseline, 1 week, 1 month, 3 months, and 6 months, respectively. The rates of clinically significant anxiety, depression, and PTSD symptoms at each time point are depicted in figure 1. Patient's QOL decreased at 1 week (mean difference [md]=5.1, p=0.04), but increased at 3 months (md -5.2, p=0.04) and 6 months (md=-5.3, p=0.07) compared to baseline. Patient's physical symptoms increased at 1 week, but decreased at 3 months (md 5.1, p=0.03) and 6 months (md=4.5, p=0.07), compared to baseline. There was no significant difference in anxiety symptoms from baseline to 1 week, 1 month, or 3 months. Anxiety symptoms improved at 6 months compared to baseline. There was no significant difference in depression or PTSD symptoms across all time points compared to baseline. In univariate linear regression, older age (β=0.4; p=0.01) and undergraduate or graduate degree (β=7.53, p=0.04) were associated with better QOL, whereas baseline anxiety symptoms (β=-14.3, p<0.01), baseline depression symptoms (β=-16.6, p<0.01), and baseline PTSD symptoms (β=-18.8, p<0.01) were associated with worse QOL at 3 months. In separate multivariable models including age, sex, education, marital status, and Eastern Cooperative Oncology Group performance status given collinearity among baseline PROs, anxiety (β=-10.6, p<0.01), depression (β=-12.6, p<0.01), and PTSD symptoms (β=-16.2, p<0.01) were the only factors associated with QOL at 3 months. Conclusion: Patients receiving CAR T-cell therapy experience significant QOL impairment and physical and psychological symptom burden, which peaks 1 week after cell infusion and improves by 6 months post-infusion. Given high rates of persistent severe symptoms and clinically significant psychological distress, interventions to improve the QOL of these patients are warranted. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

P495 Perianal fistula closure in patients receiving ustekinumab: Results from the SEAVUE and STARDUST trials

Abstract Background Perianal fistulas are common and cause significant quality of life impairment in patients (pts) with Crohn’s disease (CD). In previous phase 2/3 studies, ustekinumab (UST) showed some evidence of efficacy on fistula resolution, with no clear dose-response relationship. Additional studies are needed to evaluate the role of UST in perianal fistula treatment. Here, we report fistula data from two recent studies of UST in CD, SEAVUE and STARDUST. Methods In SEAVUE, biologic-naïve pts with moderate-to-severe CD were randomized to receive blinded UST (⁓6mg/kg IV at baseline then 90mg SC q8w) or adalimumab (ADA; 160/80mg SC at baseline/W2, then 40mg SC q2w). In STARDUST, biologic-naïve and biologic-failure pts with moderate-to-severe CD received open-label UST ⁓6mg/kg IV at baseline and UST 90mg SC at W8. At W16, pts were randomized to maintenance treatment under standard of care (90mg SC q12w or q8w) or treat-to-target (90mg SC q12w or q8w with potential adjustment to q4w) regimens. In both trials, the number of open and draining perianal fistulas was evaluated at baseline and the end of maintenance (SEAVUE W52, STARDUST W48). Fistula resolution was defined as closure of all fistulas. Pts with missing data at W52/W48 were considered to not have been in fistula resolution. In SEAVUE, pts who had a prohibited CD-related surgery, discontinued for lack of efficacy or an adverse event of worsening CD, or had prohibited concomitant medication changes before W52 were considered not to be in fistula resolution. Results In SEAVUE, 7 of 13 pts (53.8%) with active perianal fistulas at baseline in the UST group had complete fistula resolution at W52, and 6 of 16 patients (37.5%) in the ADA group had fistula resolution. In STARDUST, 9 of 19 pts (47.4%) with active perianal fistulas at baseline had complete fistula resolution at W48. Of the 9 pts in fistula resolution, 2 were receiving q12w at W48, 6 were receiving q8w, and 1 was receiving q4w. Of the 10 pts without fistula resolution, 2 were receiving q12w at W48, 3 were receiving q8w, 1 was receiving q4w and 4 discontinued before W48. In both studies, among pts with evaluable samples for pharmacokinetic analysis, fistula closure at W52/48 was not associated with higher serum drug concentrations at either the early time point of W16 or at the end of maintenance (Figure). This result was consistent for UST in both studies as well as ADA in SEAVUE. Conclusion Of pts with perianal fistulas at baseline in SEAVUE and STARDUST who received UST (32 pts in total), half were in fistula resolution after ~1 year of maintenance treatment. No relationship was observed between fistula resolution and serum drug concentrations, but no definite conclusions can be drawn given the relatively small sample size.

Current Quality-of-Life Aspects in Patients with Classical Ph-Negative Myeloproliferative Neoplasms in the Russian Federation: Overview of the Outcomes of the National Observational Program MPN-QoL-2020

Background. The national observational program MPN-QoL-2020 was focused on quality of life (QoL) and symptoms in patients with classical Ph-negative myeloproliferative neoplasms (MPNs) in the Russian Federation, as well as on the perception of the disease and treatment from the patient's and physician's perspective. Aim. To evaluate QoL in patients with different MPNs using new standardized questionnaires, to assess the most common symptoms and their impact on QoL in patients with myelofibrosis (MF), polycythemia vera (PV) and essential throm-bocythemia (ET), and to characterize the perception of the disease and treatment concerns from patients' perspective and their treating physicians' perspective. Materials &amp; Methods. In total 1100 patients with MPNs (MF: n = 355, PV: n = 408, and ET: n = 337; mean age 58 ± 14 years; 61 % women) and 100 hematologists (mean age 42 ± 12 years; 85 % women) from 37 medical centers in 8 Federal districts of the Russian Federation participated in the study. All the patients filled out symptom assessment tool (MPN10), QoL questionnaire for patients with hematological nancies (HM-PRO) and patient's survey checklist; physicians filled out physician's survey checklist and patient record for each patient included in the study. Results. For the first time in Russia in a representative population of MPN patients in the real-world setting, QoL and symptom profiles in patients with different MPNs were characterized and symptom impact on the daily living of MPN patients was identified. MPN patients exhibited QoL impairment: noticeable detriments in physical and emotional functioning, as well as in eating and drinking regimen were found, social functioning was less impaired. More than one third of MPN patients had significant QoL impairment. The vast majority of patients experienced fatigue: 92.6 % MF patients, 83.7 % PI patients, and 82 % ET patients. Symptom prevalence severity differed across different MPNs. Top disease-related symptoms to be resolved were identified from patient's and physician's perspective. Discrepancies in the attitudes of MPN patients and their treating physicians to various aspects regarding the disease and its treatment were found as well as issues needed to be improved in the patient-physician communication were identified. Conclusion. The results of national research program MPN-QoL-2020 allowed to identify the areas of QoL impairment and symptom burden in MPN patients in Russia, to verify areas of concern related to the disease and its treatment in patients with different MPNs, as well as to highlight the unmet needs in this patients' population in our country. The outcomes of the study may contribute to establishing recommendations for improving/maintaining QoL in patients with MPNs and to developing measures aimed to raise awareness of this patients' population about the disease and its treatment.

GERD is Common and Causes Significant Quality of Life Impairment: Results from Outpatients in Dar es Salaam, Tanzania

Background: Gastroesophageal reflux disease (GERD) is reported to occur in 10-20% of general population in Western countries and in about 5% in Asian countries. There is little data regarding its prevalence, pattern, associated factors and impact on the quality of life in African countries. The aim of this study was to determine the prevalence, pattern, quality of life and factors associated with GERD among outpatients in the city of Dar es Salaam in Tanzania. Methods: Between 01 June 2013 and 31 July 2013, a total of 1062 adults aged 18 years and above were recruited into this cross-sectional study and completed Swahili-language self-administered questionnaires. The Frequency Scale for the Symptoms of GERD questionnaire was used as a diagnostic tool for GERD and quality of life was assessed using the Quality of Life in Reflux and Dyspepsia (QOLRAD) questionnaire. Results: The mean age ± standard deviation of the study participants was 46.0±19.5years and 60.5% were females. The prevalence of GERD was 31.5% and was higher among females compared to males (p = 0.001). The quality of life in patients with GERD was lower in all five domains of the QOLRAD questionnaire. About two thirds (59.7%) of patients with GERD had previously sought medical advice and 59.6% had used medications for their GERD symptoms. Conclusions: The prevalence of GERD was high in this patient population and was significantly higher among females compared to men. Participants with GERD demonstrated significant impairment in the quality of life.

Assessment of life Quality index among patients with acne vulgaris in a tertiary care hospital, Karamsad, Gujarat: A cross-sectional study

Introduction: Acne Vulgaris affects nearly 85% of adolescents. Patients with acne shown to have social, psychological, and emotional impairments. Objective: To identify the psychosocial impacts on healthrelated objects of life. Method: This was a hospital-based, cross-sectional study done at rural tertiary care teaching hospital (Shree Krishna hospital) from October 2019 to November 2019 at Karamsad, Gujarat. Patient aged more than15 years with acne vulgaris were included in the study. According to our inclusion criteria, total 152 patients were included in the study. Grading of Acne vulgaris and its sequelae was done by dermatologists and Quality of Life (QoL) was assessed by using the Dermatology Life Quality Index (DLQI) questionnaire. Results: Most cases (51.97%) were among 15-20 years. The study population included 61(40%) cases with females exceed males. Facial acne was the most common (64.47%). Acne scars were seen in 85.52% of cases. Also, acne scars were more common in males (45%) than females (40%). On interpreting dermatology life quality index score, it was found that 99 % of patients had elevated DLQI scores and Mean DLQI score was 3.05. Conclusion: This study showed a significant impairment of QoL in acne vulgaris patients. Quality of life worsened with the advancement in age, in chronic acne (longer duration of disease), and increase in severity of acne and the presence of post-acne hyperpigmentation.

Quality of Life in Cohabitants of Patients Suffering Inflammatory Bowel Disease: A Cross-Sectional Study.

(1) Background: Inflammatory bowel disease (IBD) is a chronic inflammatory condition with a significant impact on patients’ general health perception. No studies have considered consequences of IBD on cohabitants. (2) Aims: The aims of this study were to address the influence of IBD on cohabitants’ quality of life (QoL) and the factors potentially conditioning this impact. (3) Methods: We conducted a cross-sectional study in which IBD patients and their cohabitants were invited to participate. Validated questionnaires were used to measure QoL in patients and cohabitants. Main clinical and sociodemographic variables were collected. (4) Results: A total of 56 patients and 82 cohabitants with significant QoL impairment were included. A direct association was found between Inflammatory Bowel Disease Questionnaire (IBDQ32) score in patients and the Household Members Quality of Life—Inflammatory Bowel Disease (HHMQoL-IBD). IBDQ32 was related to the number of flares in the last 12 months, number of hospital admissions and Mayo Score. (5) Conclusions: HHMQoL-IBD score was related to patients IBDQ32 score and the presence of extraintestinal disease. We identified CRP, a marker of disease activity, as a factor related to cohabitants’ quality of life, pointing to a direct relationship of patients’ disease activity and their cohabitants’ quality of life.

Predictors of clinically significant quality of life impairment in Parkinson\u2019s disease

Quality of life (QOL) plays an important role in independent living in Parkinson’s disease (PD) patients, being crucial to know what factors impact QoL throughout the course of the disease. Here we identified predictors of QoL impairment in PD patients from a Spanish cohort. PD patients recruited from 35 centers of Spain from the COPPADIS cohort from January 2016, to November 2017, were followed up during 2 years. Health-related QoL (HRQoL) and global QoL (GQoL) were assessed with the 39-item Parkinson’s disease Questionnaire (PDQ-39) and the EUROHIS-QOL 8-item index (EUROHIS-QOL8), respectively, at baseline (V0) and at 24 months ± 1 month (V2). Clinically significant QoL impairment was defined as presenting an increase (PDQ-39SI) or decrement (EUROHIS-QOL8) at V2 ≥ 10% of the score at baseline (V0). A comparison with a control group was conducted for GQoL. GQoL did not change significantly in PD patients (N = 507; p = 0.686) or in the control group (N = 119; p = 0.192). The mean PDQ-39SI was significantly increased in PD patients (62.7 ± 8.5 years old; 58.8% males; N = 500) by 21.6% (from 16.7 ± 13 to 20.3 ± 16.4; p < 0.0001) at V2. Ninety-three patients (18.6%) presented a clinically significant HRQoL impairment at V2. To be younger (OR = 0.896; 95% CI 0.829–0.968; p = 0.006), to be a female (OR = 4.181; 95% CI 1.422–12.290; p = 0.009), and to have a greater increase in BDI-II (Beck Depression Inventory-II) (OR = 1.139; 95% CI 1.053–1.231; p = 0.001) and NMSS (Non-Motor Symptoms Scale) (OR = 1.052; 95% CI 1.027–1.113; p < 0.0001) total scores from V0 to V2 were associated with clinically significant HRQoL impairment at the 2-year follow-up (Hosmer–Lemeshow test, p = 0.665; R2 = 0.655). An increase in ≥5 and ≥10 points of BDI-II and NMSS total score at V2 multiplied the probability of presenting clinically significant HRQoL impairment by 5 (OR = 5.453; 95% CI 1.663–17.876; p = 0.005) and 8 (OR = 8.217; 95% CI, 2.975–22.696; p = 0.002), respectively. In conclusion, age, gender, mood, and non-motor impairment were associated with clinically significant HRQoL impairment after the 2-year follow-up in PD patients.

Impact of acne variables on Egyptian patients’ psychometric and quality of life

Background: Acne vulgaris is a common skin disease which has a major impact on quality of life and common psychiatric co-morbidities. Objective: was to assess Quality Of Life (QOL) and depression in Egyptian acne patients and the effect of acne variables such as clinical severity, disease duration, type of treatment and presence of complications on patients’ psychometric using objective scales. Patients and methods: Four hundred acne patients and one hundred healthy participants as controls were included in the study. The patients were subjected to clinical examination with assessment of acne severity by Global Acne Grading Scale (GAGS) and patient selffulfillment of 2 psychometric questionnaires: Cardiff Acne Disability Index (CADI) and Beck depression inventory (BDI). Results: There was significant impairment of QOL in Egyptian acne patients. Impairment of QOL was significantly correlated with acne severity and its complications. Moreover, increase in depression scores was also found to be significantly correlated with acne severity and its complications. Conclusion: There is strong positive correlation between the severity and complications of acne and the psychiatric condition of the patients. Psychiatric assessment and early management of the acne patients is necessary. Keywords: acne; quality of life; depression; questionnaire.

Dermatology life quality index in patients of acne vulgaris presenting to a tertiary care hospital: an observational study

&lt;p class="abstract"&gt;&lt;strong&gt;Background: &lt;/strong&gt;Acne vulgaris is a common, chronic disorder resulting from the inflammation of pilosebaceous unit, present with clinically various forms. It is usually prevalent in adolescent may persist in adulthood. This study was conducted to evaluate the quality of life (QoL) in patients suffering from acne vulgaris.&lt;/p&gt;&lt;p class="abstract"&gt;&lt;strong&gt;Methods:&lt;/strong&gt; Hospital based cross sectional study was conducted in 60 patients. Dermatology life quality index (DLQI) questionnaire was used to observe the effect of acne among patients.&lt;/p&gt;&lt;p class="abstract"&gt;&lt;strong&gt;Results: &lt;/strong&gt;Total numbers of patients enrolled were 60 (43 females,17 males). The mean age was 24.85±5.63 years. Maximum patients were of the age group 26-30 years (22 patients; 36%) and least were of 31-36 age group. Out of 60 patients, 29 patients had grade II acne followed by 20 with grade I acne, grade III acne was present in 11 patients. Most of the patients 31 (52%) were having “moderate impact” on quality of life followed by 23 (38%) with “small impact” on QOL. There was a significant positive correlation between grade of acne and DLQI (Pearson correlation=0.753, p=0.00).&lt;/p&gt;&lt;p class="abstract"&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Our study showed significant impairment of QoL in acne patients. DLQI increases with increase in severity of acne. Treatment of acne should not be guided only by the clinical grade of acne, but take into consideration the psychosocial impact the condition has on the patient. Adequate counselling along with early treatment of acne vulgaris is essential in order to reduce the disease related psychosocial sequelae and increase treatment efficacy.&lt;/p&gt;

Quality of life in lupus erythematosus female patients with cutaneous lesions in Antananarivo, Madagascar.

Background: Lupus erythematosus (LE) is a chronic autoimmune disease that affects more women than men. The quality of life (QoL) of patients with lupus erythematosus and skin manifestations is impaired, but little is known about Malagasy patients.Objective: This study aimed to assess the impact of cutaneous lesions on the QoL of patients who present with LE.Methods: A transversal study, during 3 months, was conducted in patients who presented with LE and cutaneous lesions at the University Hospital Antananarivo. QoL was assessed using the Dermatology Life Quality Index (DLQI) scales.Results: The impact of cutaneous lesions on the QoL was assessed in 37 patients with LE, of whom 34 were women. The mean age of patients was 37.32 years. The mean DLQI was 5.43 ± 4.67 (range, 0–21). Of the patients, 2.7% had a very important effect (DLQI >21), 18.9% reported a great effect of skin symptoms of LE in their QoL (DLQI: 11–20), 18.9% had a moderate effect (DLQI: 6–10), 40.4% had a small effect (DLQI: 2–5), and 18.9% had no effect of cutaneous lesions on their QoL. Daily activities, symptoms, and feelings were the most altered dimensions. The alteration in patients’ QOL was influenced by high monthly income, severe medical history, and localization of the cutaneous lesions on the face and neckline. No correlation was found between sex and QoL.Conclusion: This study shows that significant impairment of QoL was found in patients with LE and cutaneous manifestations, which affected their sense of well-being.

Quality of Life (QoL) and Clinical Outcomes in Patients with Relapsed/Refractory Multiple Myeloma (RRMM) Receiving Ixazomib-Lenalidomide-Dexamethasone (IRd) in a Real-World Setting

The goal of treatment of relapsed/refractory multiple myeloma (RRMM) is to control the disease, prolong survival, reduce disease-related symptoms, and improve quality of life (QoL). Comprehensive evaluation of new treatment regimens in RRMM pts is worthwhile. We aimed to evaluate QoL, treatment satisfaction, response to treatment and safety during Ixazomib-Lenalidomide-Dexamethasone (IRd) treatment as ≥ 2nd line in RRMM pts in a real world setting. Adult pts with RRMM who have been assigned IRd as ≥2nd line treatment were enrolled in multicenter observational prospective study. Treatment response was evaluated by IMWG 2011, adverse events (AEs) - by CTCAE v.4.0. Pts filled out RAND SF-36 and ESAS-R at baseline and at 1 and 3 mos, and thereafter every 3 mos till 18 mos after IRd treatment start; Patient Treatment Satisfaction Cheklist (PTSC) - at each time-point after IRd treatment start. For analysis of meaningful QoL changes during IRd treatment the proportion of pts with baseline significant QoL impairment who experienced meaningful QoL improvement during IRd treatment was evaluated as well as the number of pts without baseline QoL impairment who maintained it during IRd treatment. For statistical analysis GLM paired test and GEE were employed with adjustment to age, gender and baseline QoL. In total, 40 pts with RRMM were enrolled into the pilot study: median age - 64 years (range, 33-80), 29% males, Durie-Salmon stage at study entry: I/II/III - 3/41/56%, ECOG status 0/1 - 68.7%, 2/3 - 31.6%. Median time since initial MM diagnosis - 51.4 mos (range, 2.9-100.7), disease status at study entry: relapsed - 26%, refractory - 21%, relapsed and refractory - 53%. Median number of lines of prior therapy is 3 (range, 1-3). At the time of analysis the median number of IRd cycles administered is 5, median follow-up - 4.6 (0.4-13.7) mos. Treatment response was not evaluated in 11 pts: 1 - death (at 3 months), 1- refusal, 9 - too early for evaluation. Out from 29 pts one patient achieved complete response (CR), seven pts achieved partial response (PR) and one patient - very good partial response (VGPR), 12 - minor response (MR). Thus, a clinical benefit rate was 70%. Also, seven pts achieved stable disease (23%), one patient was primary refractory to IRd (3.5%), one patient died (3.5%). At the time of analysis all the pts with CR/PR/VGPR (30%) maintained their response to treatment, 4 pts (13%) maintained stable disease and 9 pts (30%) maintained minor response; 7 pts (23%) experienced disease progression. AEs were revealed in 47% pts: grades 1-2 AEs - 12 pts; grades 3-4 AEs - 4 pts; SAEs - 3 pts (neurological toxicity, gastric bleeding, hypotension), all pts with SAEs discontinued IRd treatment. Baseline QoL was dramatically impaired by the majority of SF-36 scales with significant QoL impairment in 42% pts. The most worsening was revealed for physical functioning, role functioning, general health and vitality (Mean scores varied from 24.6 to 47.0 out from 100 scores). At baseline 88% pts had moderate-to severe symptoms (≥4 scores on the scale from 0 to 10); moderate-to severe worse wellbeing, tiredness, pain and shortness of breath had 72,5%, 67,5%, 61,5% and 45% pts, respectively. At 1 month of IRd treatment QoL meaningfully improved or was stable without significant impairment in 61% pts, at 3 months - in 50% pts. In 1 mos of IRd treatment significant improvement was revealed for physical functioning (GLM, 44.9 vs 54.7, p=.01) and general health (GLM, 47.8 vs 56.3, p&amp;lt;.001). Further during IRd treatment no significant QoL worsening was identified (GEE, p&amp;gt;.05). At 1 month of treatment, meaningful decrease of shortness of breath (in 42% pts), tiredness (36%), and pain (28%) was revealed; at 3 months of IRd treatment this proportion was 33%, 27%, and 13%, accordingly. Regarding treatment satisfaction pts reported the following: at 1 month after treatment start 94% of pts were satisfied with symptoms decrease due to IRd, 89% pts confirmed that IRd was convenient and 97% pts reported global satisfaction with IRd; at 3 months of treatment all the pts confirmed the convenience of IRd regimen, 84% pts were satisfied with IRd treatment. The results obtained in a real-world setting demonstrate clinical benefits of IRd regimen in RRMM pts, which were achieved without negatively affecting QoL and with satisfactory symptom control in these heavily pretreated patients. IISR funded by Takeda Disclosures Ionova: BMS: Research Funding; Takeda: Research Funding. Vinogradova:Novartis: Honoraria, Research Funding.