Impact Quality Of Life Research Articles

A qualitative interview study on quality of life and ageing experiences of autistic adults

Quality of life across the lifespan has been established as a key research priority by the autism community. Still relatively little is known about the quality of life and ageing experiences of older autistic adults. Most studies to date have used generic measures of quality of life which may not accurately capture the experiences of autistic people. The aim of this qualitative study was to understand how autistic adults experience and define quality of life as they age. We conducted semi-structured interviews with 16 autistic adults aged 40+ from the UK and Luxembourg. Using reflexive thematic analysis, we identified five themes that contribute to quality of life: (1) Diagnosis is pivotal, (2) Connection with others, (3) Autonomy over space and time, (4) ‘Paperwork of life’, (5) Vulnerability. This study identifies autism-specific aspects of quality of life and highlights ways in which ageing and autism intersect and impact quality of life.

Visual fatigue prediction using classification model based on physiological responses of occupants under office lightings

Appropriate management of visual fatigue is crucial for eye health as it significantly impacts life quality throughout an individual's life cycle. The shift to digital tasks in modern office environments has increased occupants' exposure to visual fatigue, leading to various social problems. This study aimed to develop visual fatigue prediction models based on physiological responses and classification algorithms. Experiments were conducted to collect physiological responses and subjective visual fatigue under various lighting environments. Collected data was refined and reorganized as predictor variables by different time windows and target variables by scales. Then, visual fatigue prediction models were developed using supervised machine learning algorithms (i.e., artificial neural network, support vector machine, gradient boosting machine, and random forest). And improved by feature selection and adding subject-label variables. The resulting two-scale and three-scale visual fatigue prediction models demonstrated an average performance of 93.73 % and 94.64 % respectively. This research can contribute to reducing societal costs and enhancing productivity by proposing visual fatigue prediction models that help manage eye health in office environments.

Impact of rehabilitation with dental implants on the quality of life of patients undergoing maxillofacial reconstruction: a systematic review.

Maxillofacial reconstruction with dental implants in microvascular tissue flaps aims to improve mastication. However, the quality of life (QoL) impact of this intervention is yet to be determined. This systematic review assessed the QoL impact of maxillofacial reconstruction with implant-supported teeth compared to no dental rehabilitation, removable dentures, and obturator (modified denture). Additionally, we examined instruments applied to measure QoL in maxillofacial reconstruction. Databases Ovid Medline and Embase, Scopus, Web of Science and Handle on QoL were searched. Cohort, case-control and randomized controlled trials (RCT) were narratively synthesized for QoL captured through validated instruments. Study methodological quality was assessed using Cochrane Risk of Bias 2 and Risk of Bias in Non-randomized studies of Exposure. Instruments underwent COSMIN content validity analysis. Of a total of 2735 studies screened, the three included studies (two cohort and one RCT) showed improved QoL with maxillofacial reconstruction compared to obturator and no dental rehabilitation. However, these studies have high risk of bias due to confounding. None of the instruments achieved a sufficient relevance rating for maxillofacial reconstruction, having been designed for other target populations and there is no evidence on their content validity for this population, but the EORTC QLQ30 H&N35 satisfied more COSMIN criteria than the UW-QOL and OHIP-14. Although studies showed favourable QoL with maxillofacial reconstruction involving dental implants, these have high risk of bias and further studies are needed to establish the impact. Existing QoL instruments lack content validity and tailored instruments are needed for QoL evaluation in maxillofacial reconstruction.

Disparities in neighborhood deprivation and patient reported quality of life relating to post-operative sequelae after radical cystectomy.

141 Background: Readmissions following radical cystectomy(RC) remain high despite prehabilitation and enhanced recovery after surgery (ERAS) care. Recently, studies have shown the correlation between socioeconomic neighborhood deprivation (ND) and post-operative quality of life (QoL) in oncologic surgeries. We sought to examine the impact of preoperative QoL and ND with postoperative sequela following RC. Methods: This was a prospective IRB approved study of patients undergoing RC for bladder cancer from 2021 to 2023. QoL was assessed with the FACT-Bl-Cys survey. Clinicopathologic, complication, and readmission data were collected up to 90 days, as well as distance from the hospital and 4 zip-code based Indices (1-100 index scores representing socioeconomic deprivation). FACT-BL-Cys and indices scores were correlated with outcomes of interest. Pairwise Spearman correlation was done between indices and QoL Instruments. A multivariable analysis (MVA) identified the factors that influence complications and readmissions. Results: The cohort consisted of 56 patients, mostly men (n=40, 71%). Median age was 69, most had organ-confined disease (≤(y)pT2N0M0, n =45, 80%) and underwent neoadjuvant chemotherapy (n=32, 57%). 75% underwent a continent diversion (neobladder n=38, 68% or continent cutaneous diversion n=4, 7%). Median follow-up time was 10.1 months (range 3.7 - 16.7 months). No correlation was observed between 30/90-day complications or readmissions with FACT-BL-Cys. Healthy Places Index (HPI) correlated with overall QoL and subscores. On MVA, correlation was seen between Social Deprivation Index (SDI) and 90-day readmissions (p=0.03, OR=0.97, 95%CI= 0.94-0.99). Conclusions: Patient-reported QoL aligns with diverse socioeconomic strata, as per deprivation indices, which in turn correlate with readmissions. Further studies are needed to understand the relationship between patient reported QoL and ND with postoperative outcomes. Correlation between zip code-based deprivation indexes and quality of life scores. Well Being Scores Distance to Hospital HPI DCI SDI Physical 0.35 (p=0.01) 0.28 (p=0.05) -0.22 (p=0.11) -0.15 (p=0.27) Social 0.00 (p= 0.97) 0.10 (p=0.46) -0.11 (p=0.40) -0.10 (p=0.49) Emotional -0.07 (p=0.62) -0.18 (p=0.21) 0.19 (p=0.15) 0.22 (p=0.11) Functional 0.28 (p=0.04) 0.36 (p=0.01 ) -0.26 (p=0.05) -0.16 (p=0.24) BL-CYS 0.13 (p=0.36) 0.23 (p=0.10) -0.11 (p=0.42) -0.04 (p=0.79) TOI (PWB+FWB+BL-CYS) 0.26 (p=0.06) 0.34 (p=0.01) -0.22 (p=0.10) -0.13 (p=0.33) FACT-BL-CYS Total Score 0.19 (p=0.16) 0.31 (p=0.03) -0.20 (p=0.13) -0.11 (p=0.42) HPI: Healthy Places Index, DCI: Distressed Communities Index, SDI: Social Deprivation Index, ADI: Area Deprivation Index.

Community empowerment through home care training to improve the quality of life of patients

Community empowerment is one of the effective strategies to improve patient's quality of life by increasing the capacity of families and communities to provide home care. This service aims to evaluate the impact of home care training on the quality of life of patients with chronic health conditions treated at home. The methods used in the training include theory, practical simulations, and group discussions. The evaluation results showed that the trainees experienced an increase in knowledge and skills in providing home care, which positively impacted patients' quality of life. The program empowers families to treat patients more effectively and reduces the burden on the formal health system by optimizing care at home. This activity concludes that home care training is an effective strategy for community empowerment to improve patients' quality of life and support the sustainability of health care in the community

Patient-reported outcome measures and physical function following head and neck lymphedema - a systematic review.

Head and neck cancer (HNC) treatments often lead to significant morbidity, including lymphedema. This systematic review aims to comprehensively explore the prevalence and impact of head and neck lymphedema (HNL) following treatment. A systematic literature search was conducted up to September 2023. Studies evaluating HNL prevalence, associated factors, impact, patient-reported outcomes (PROMs), and physical assessments were included. Methodological quality assessment was performed, and data were synthesised narratively. Twelve studies met the inclusion criteria, with methodological quality ranging from moderate to high. Internal lymphedema prevalence was consistently higher than external lymphedema, with varying rates attributed to treatment modalities and assessment methods. PROMs such as the Lymphedema Symptom Intensity and Distress-Head and Neck and physical assessments including Patterson's Rating Scale were commonly utilised. HNL significantly impacted quality of life and physical function, with reported symptoms including discomfort, tightness, swallowing difficulties, and psychological distress. HNL is a common sequela of HNC treatment with significant implications for individuals' QoL. Standardised assessment protocols and tailored interventions are needed to address the needs of individuals with HNL and improve overall outcomes. This systematic review highlights a significant prevalence of lymphedema, particularly internal lymphedema in the larynx and pharynx, following treatment. Swallowing difficulties, nutritional issues, anxiety, depression, and body image concerns were associated with both internal and external lymphedema. The impact on quality of life is substantial, with survivors experiencing physical symptoms and psychosocial challenges, emphasising the importance of integrated care approaches tailored to both aspects of well-being.

The Impact of Cardiac Rehabilitation on Quality of Life in Elderly Heart Failure Patients-Literature Review

The research investigates how cardiac rehabilitation impacts life quality in elderly heart failure patients. Older patients often encounter distinctive issues, such as other health conditions and age-linked frailty, affecting their ability to join and gain from rehab programs. This study examines customized rehab plans to meet these needs, which entail using both traditional and new methods like telerehabilitation and activities such as Tai Chi and yoga. Results show that specific rehab programs notably improve functional ability and cut hospital stays for elderly heart failure patients. Also, home-based rehab plans, like the REACH-HF program, appear cost-effective, boosting life quality and reducing health problems. Telerehabilitation has shown to expand access to rehab services, especially aiding elderly patients who struggle to attend on-site programs. This study also asseses the improvement in quality of life, namely the physical and psychological health, such as the augmentation/improvement of patients’ exercise tolerance, participation in social activities or even the increased desire of taking care of themselves. The research highlights the significance of including risk understanding, precise nursing activities, and diverse physical exercises to enhance involvement and commitment, improving results and patient happiness. These findings support the ongoing creation and execution of patient-focused cardiac rehab strategies to better the overall health and well-being of elderly heart failure patients.

Bayesian spatio-temporal modeling of the Brazilian fire spots between 2011 and 2022

Wildfires are among the most common natural disasters in many world regions and actively impact life quality. These events have become frequent due to climate change, other local policies, and human behavior. Fire spots are areas where the temperature is significantly higher than in the surrounding areas and are often used to identify wildfires. This study considers the historical data with the geographical locations of all the “fire spots” detected by the reference satellites covering the Brazilian territory between January 2011 and December 2022, comprising more than 2.2 million fire spots. This data was modeled with a spatio-temporal generalized linear mixed model for areal unit data, whose inferences about its parameters are made in a Bayesian framework and use meteorological variables (precipitation, air temperature, humidity, and wind speed) and a human variable (land-use transition and occupation) as covariates. The meteorological variables humidity and air temperature showed the most significant impact on the number of fire spots for each of the six Brazilian biomes.

Development of Symptom Specific Dysphagia Quality of Life Questionnairein Tamil.

Swallowing intricately involves sensorimotor systems, pivotal for integrating upper digestive and respiratory functions. Dysphagia, challenging swallowing, often precipitates anxiety and depression, deeply affecting the quality of life (QOL). Understanding patient-centric symptoms is vital for assessing dysphagia's QOL impact. This study aimed at developing and validating the Symptom Specific Dysphagia Quality of Life Questionnaire in Tamil (SSDQOL-T). SSDQOL-T was developed in Tamil and underwent rigorous content validation. This questionnaire was administered to 120 normal individuals and 32 dysphagia patients, assessing various swallowing difficulties and their QOL impact. Results indicate SSDQOL-T's good internal consistency (Cronbach's α = 0.78). Significant differences in swallowing ability and QOL were noted across age groups, with older adults experiencing heightened symptoms. A high significance in mean score was obtained between healthy adults and dysphagia across all sub-domains with a 'p-value' of 0.0005. Symptoms that were found to have high significance were cough/gag reflex, regurgitation, odynophagia, globus sensation, heartburn and tiredness when compared between mechanical and degenerative dysphagia group. Strong correlations were found between SSDQOL-T scores and the Dysphagia Handicap Index in Tamil (r = 0.89). The SSDQOL-T questionnaire provides a robust tool for evaluating dysphagia-related QOL in the Tamil-speaking population. Its validation underscores its clinical relevance and utility for understanding the multidimensional impact of dysphagia. This study emphasizes the importance of culturally sensitive assessment tools in comprehensively evaluating dysphagia's QOL implications.

Living with and Caring for People with Multiple Food Allergies: A Qualitative Study.

The quality of life (QoL) impact of food allergies extends beyond severe allergic reactions, as food avoidance can permeate the daily lives of individuals with food allergies and their caregivers. People with multiple food allergies may experience a greater impact on QoL than people with a single food allergy, but there is limited evidence available. The aim of the study was to provide insight into the lived experiences of adults, teenagers, children, and caregivers of children with multiple food allergies. Semi-structured interviews were conducted of people with multiple food allergies and their caregivers (n = 20) in the United States, including 10 adults, 5 teenagers, and 5 caregivers of children. Patterns in responses were explored using reflexive thematic analysis. Four themes were developed by the researchers to convey the experiences of people with food allergies and QoL impact: preparedness and allergen avoidance results in a loss of spontaneity; emotional impact varies by person and for each person; participating in society involves speaking up and trusting others; and food is more than nutrition. In addition, 3 themes were identified that convey the experiences of caregivers: looking out for your child's safety is an emotional balancing act; limitations on what you can do on your own and as a family; and creating a safe and fulfilling environment can be time-consuming and costly. These findings highlight that people with multiple food allergies experience social limitations, stress about food safety and allergen avoidance, and restrictions on freedom. Caregiver QoL is impacted by the need to navigate social, emotional, and practical implications of caring for a child with multiple food allergies.

766. LASTING SYMPTOMS AFTER OESOPHAGEAL RESECTIONAL SURGERY (LASORS): MULTICENTRE VALIDATION COHORT STUDY

Abstract Background As outcomes following curative-intent oesophageal cancer treatment improve, more patients are living with the long-term morbidity of cancer therapies, the symptoms of which are poorly recognised and understood. Existing symptomatology and quality-of-life tools are cumbersome and moreover are not designed specifically for evaluation of post-treatment survivorship. The LASER study and subsequent consultation process identified six key symptoms thought to predict poor health-related quality-of-life (HRQoL) as measured by validated European Organisation for Research and Treatment of Cancer (EORTC) tools. The current study aimed to validate this six-symptom LAsting Symptoms after Oesophageal Resection (LASOR) clinical tool, and assess its clinical utility. Methods In this multi-centre cohort study, patients who underwent oesophagectomy between January 2015 and June 2019 across the United Kingdom, and were disease-free at least one-year post-treatment, were asked to complete LASOR, EORTC-QLQ-C30 and QLQ-OG25 questionnaires. LASOR symptoms (low mood, reduced energy, thoracotomy pain, heartburn, diarrhoea, and bloating after eating) were evaluated using composite scores based on frequency and quality of life impact, and correlated with EORTC HRQoL scores. The ability of the LASOR tool to predict patients with poor HRQoL was validated using receiver operating characteristic (ROC) curve analysis. Patient acceptability of the tool was assessed using a separate questionnaire. Results 263 participants were included. 192 (73%) were males. Surgical technique included open (61%), hybrid (18%), and minimally-invasive (21%). 203 patients (77%) received neoadjuvant chemotherapy or chemoradiotherapy. 148 patients (56%) experienced a post-operative complication. Four LASOR symptoms were associated with significantly lower HRQoL: reduced energy (OR=2.13; 95% CI 1.20-2.87), low mood (OR=1.86; 95% CI 1.45–3.12), diarrhoea (OR=1.48; 95% CI 1.06–2.06), and bloating (OR=1.35; 95%CI 1.03-1.77). In combination, the LASOR symptoms produced an area under the ROC curve of 0.85 (sensitivity = 0.82, specificity = 0.73). Conclusion The six-symptom LASOR tool generated a reliable model for identification of patients with a poor HRQoL, with an overall diagnostic accuracy of over 80%. This is the first clinical symptom tool to be validated in the post-curative-treatment setting for patients with oesophageal cancer. The LASOR tool is straightforward to administer and highly acceptable to patients, and can be used to identify those at risk of high morbidity and poor quality of life in surveillance programmes. In turn, evidence-based survivorship services can be integrated into patient follow-up to alleviate the burden of cancer treatment on oesophagectomy patients.

Quality of life and psychosocial impact on patients with blood disorders: An empirical study from patients' perspectives in Saudi Arabia.

this study aims to analyze QOL and psychosocial impact on patients with blood disorders. A cross-sectional survey design is adopted in this study. The survey questionnaire included SF-36 form for measuring quality of life (QOL), along with psychosocial impact assessment scale. Adult patients with different types of blood disorders were recruited for the survey. Out of the 417 responses received, 389 were considered for data analysis and the remaining were avoided due to incomplete data. In terms of psychosocial impact scales, the highest mean is observed for financial stress (4.09 ± 1.22), followed by social exclusion (3.76 ± 1.19) and relationship challenges (3.31 ± 1.18). Among the QOL scales, the highest mean was observed for pain (3.81 ± 1.17), followed by physical functioning (3.68 ± 1.12). Statistically significant differences (p < 0.05) were observed among the participants groups characterized by age and type of disorder. Strong positive correlations between social exclusion and general health (r = 0.513), as well as pain and relationship challenges (r = 0.735) were observed. Given the existing challenges in social exclusion, poor awareness, and support there is a need to develop comprehensive and personalized treatment plans integrating physical and mental support, awareness creation, and financial support.

Legal and environmental responsibility towards justice in industrial pollution

Industrial pollution is a pressing environmental challenge of our time. It has profoundly impacted ecosystems, human health, and quality of life. This study delves into the realms of legal responsibility and environmental justice in the context of pollution stemming from industrial activities. The research aim is to identify and analyze effective legal and policy approaches to handle and tackle this issue. The research method employed is a literature review, scouring for references pertinent to the research context. It used secondary data, which are data available to the public. Data were obtained using industrial pollution as the main keyword, in addition to legal and environmental responsibilities. The findings underscore not only the significance of stringent law enforcement but also highlight the pivotal and empowering role of community participation in the decision-making process. The industry is called upon to demonstrate transparency and accountability. The research further underscores the need for a comprehensive and collaborative approach involving multiple disciplines and sectors to devise sustainable solutions that safeguard the environment while fostering economic growth. It concludes that achieving environmental justice and legal responsibility in the context of industrial pollution necessitates a blend of innovative policies, bolstered community capacity, and enhanced cross-border cooperation.

Measuring the effect of the anti-nerve growth factor antibodies bedinvetmab and frunevetmab on quality of life in dogs and cats with osteoarthritis using a validated health-related quality of life outcome measure: an observational real-world study.

Osteoarthritis causes chronic pain, impaired joint function, decreased mobility and negatively impacts quality of life (QOL). Anti-nerve growth factor antibodies bedinvetmab for dogs and frunevetmab for cats are licensed for the alleviation of osteoarthritis pain but their QOL impact is unreported. Our aim was to determine if these therapeutics improve QOL using a validated health-related QOL measure that generates scores in four domains of QOL-energetic and enthusiastic (E/E), happy and content (H/C), active and comfortable (A/C) and calm and relaxed (C/R)-in the dog and three in the cat-vitality, comfort and emotional wellbeing (EWB). Summary scores for physical wellbeing (PWB) and emotional wellbeing (EWB) for dogs and PWB for cats are calculated from the domain scores. Animals received bedinvetmab (dogs) at 0.5-1 mg/kg or frunevetmab (cats) at 1-2.8 mg/kg by subcutaneous injection on days 0, 28 and 56 and owners completed QOL assessments within 48 hours of day 0 and on days 14, 28, 56, 63 and 70 using a study-specific app. Assessments were completed by 75 dog and 56 cat owners. By day 14 there was a statistically significant improvement (p ≤ 0.001) in PWB, EWB and all domains except C/R (p = 0.005) in dogs and in all domains and PWB in the cat. Subsequently there was a continued improvement in all domains and summary scores (p ≤ 0.001) except for H/C in the dog and EWB in the cat, which were excluded from the statistical model. The overall improvement in all domain scores in the cat and E/E and A/C in the dog exceeded the previously reported minimum important difference scores for the QOL measure, indicating a clinically significant change. Treatment with bedinvetmab and frunevetmab produced a significant improvement in the QOL of dogs and cats. This latest evidence for the use of these OA pain medications could be helpful in the clinical management of osteoarthritis and post-marketing clinical trials.

Approach to Mycosis Fungoides in children: Consensus-based recommendations

Pediatric Mycosis fungoides (MF) management extrapolates from adult guidelines, despite differing clinical aspects. Recommendations are essential to address unique challenges in this distinct patient group. This project aims to derive consensus recommendations for pediatric MF management. Experts from pediatric dermatology, general dermatology, dermatopathology, and pediatric hematology-oncology (N=83) were invited to contribute to consensus recommendations. The process involved 3 electronic Delphi rounds, concluding with a final consensus meeting using a modified Nominal Group Technique for unresolved items. Consensus included more clinical severity measures than tumor-node-metastasis-blood staging: pruritus, functional or esthetic impairment (eg, palms, soles, genitalia), quality of life impact, and psychological aspects (eg,embarrassment, anxiety, depression), plus parental anxiety. Ten recommendations were made for managing early and advanced pediatric MF. Disagreement emerged in choosing therapies beyond stage I of the disease. This multinational initiative aimed to standardize optimal pediatric MF management and successfully generated consensus recommendations. Additional work is needed for structured, prospective protocols in advanced-stage pediatric MF. Lack of pediatric hematologists-oncologists and patients' representatives. Documentation of extended clinical severity and outcome measures is recommended. Addressing the need for structured protocols in advanced-stage pediatric MF and implementing systematic, prospective data collection is crucial.

Assessment of the Quality of Life of Vitiligo Patients: A Cross-Sectional Study in the Eastern Region of Saudi Arabia.

Background Vitiligo is a prevalent skin disease that results from the loss of melanocytes and subsequent hypo-melanosis, resulting in the depigmentation of the skin. It not only presents as pathological manifestations but also imposes a substantial psychological burden and exerts a significant influence on the quality of life (QOL) of individuals. This research proposal seeks to systematically explore the association between vitiligo and the QOL of affected individuals, employing rigorous scientific methodologies to identify effective interventions aimed at improving their holistic well-being. Methodology It was a cross-sectional survey conducted in the Eastern Region of the Kingdom of Saudi Arabia (KSA). Data collection utilizes an online survey through Google Forms and employs the Dermatology Life Quality Index (DLQI). Appropriate statistical analyses were performed. Results Our study comprised 263 vitiligo patients, 55.1% of whom were females and 54.4% of whom were aged 18-30. Impact assessment revealed a substantial emotional toll (56.3% embarrassed), affecting daily activities (42.6%) and clothing choices (43.7%). Notably, 36.5% reported very much impact on relationships and 35.7% on sexual problems. Notably, 41.4% face a very large impact, and 35.4% face an extremely large impact. Linear regression identified a significant gender difference (p = 0.008), with males experiencing less QOL impact or females experiencing more QOL impact due to vitiligo.Age and marital status showed nonsignificant associations. Conclusions Our study highlights the substantial impact of vitiligo on the QOL among Saudi adults. Gender significantly influences severity, with females experiencing a more severe impact on the QoL, emphasizing the need for tailored interventions and support.

Development and psychometric properties of the Functional Assessment of Cancer Therapy-Cutaneous T-Cell Lymphoma (FACT-CTCL).

Patients with Mycosis Fungoides (MF)/Sézary Syndrome (SS) can experience impacted health-related quality of life (HRQoL). To validate the CTCL-S, a novel subscale of the Functional Assessment of Cancer Therapy - General (FACT-G), in patients with MF/SS. Qualitative interviews were conducted with expert clinicians and MF/SS patients. Thematic analysis identified the most common concerns, and 19 items were selected.MF/SS patients were recruited from a single center. FACT-G, CTCL-S (collectively "FACT-CTCL"), Skindex29, and Visual Analogue Scale-Pruritis (VAS itch) were administered. A subset repeated FACT-CTCL and VAS itch after ≈2 weeks. Patient demographics and clinical characteristics were obtained via review of the electronic medical record.Psychometric properties were assessed. Internal consistency was estimated using Cronbach's alpha (α). Convergent and discriminant validity were assessed by comparing CTCL-S to disease stage, age, VAS itch, FACT-G, and SkinDex29. Exploratory factor analysis (EFA) was used to preliminarily assess CTCL-S dimensionality. Test-retest repeatability was summarized using intraclass correlation coefficient (ICC), within-subject standard deviation (wSD), and within-subject coefficient of variation. Seventy-two patients completed the initial survey, and 35 repeated the FACT-CTCL and VAS itch after ≈2 weeks. Two-thirds were male, most were white (78%). The majority (85%) had MF, 15% SS, and 75% early (stage IA-IIA) and 25% advanced (≥ stage IIB) disease. Preliminary EFA found a single predominant factor, supporting a hypothesis of unidimensionality of the CTCL-S. Internal consistency of the CTCL-S was high (α: 0.95 [95% CI: 0.93-0.96]). There was no significant change in CTCL-S average test-retest scores (ICC of 0.93 (p = 0.63)). CTCL-S was significantly lower in advanced vs early stage disease (median[IQR]: 34[26, 48] vs. 59[44, 68], p < 0.001) and strongly correlated with VAS itch (Spearman's r (rs): -0.70, 95% CI: -0.81, -0.55), FACT-G (rs: 0.77, 95% CI: 0.65, 0.85), and Skindex29 (rs: -0.90, 95% CI: -0.94, -0.84), supporting convergent validity. CTCL-S scores had little correlation with age (rs: 0.19, 95% CI: -0.05, 0.41, p = 0.12), supporting discriminant validity. The FACT-CTCL is a disease specific instrument for assessing HRQoL with high reproducibility and good performance in a cohort of patients with MF/SS.

Assessing anorectal function in patients with recurrent ulcerative colitis

PurposeUlcerative colitis (UC) is an inflammatory bowel disease with an unclear etiology that can lead to irreversible changes in distal colonic function in chronic patients. This study investigated anorectal function in recurrent UC patients and identified influencing factors.MethodsThis prospective study enrolled 33 recurrent UC patients and 40 newly diagnosed patients from January 2019 to December 2022. Data collection included clinical records, scores, and anorectal function assessments. Regression analyses were used to identify factors impacting anorectal function.ResultsRecurrent UC patients had higher baseline CRP and fecal calprotectin levels, increased anxiety and depression, and more severe fecal incontinence. They also had lower BMIs, serum Hb and albumin (ALB) levels, and Inflammatory Bowel Disease Questionnaire scores than did initial-onset UC patients. Multivariate linear regression analysis revealed that long disease duration (coef. − 0.376, P < 0.001) and high fecal calprotectin level (coef. − 0.656, P < 0.001) independently influenced the initial sensation threshold in recurrent UC patients. Additionally, high fecal calprotectin (coef. − 0.073, P = 0.013) and high Zung Self-Rating Anxiety Scale score (coef. − 0.489, P = 0.001) were identified as two independent determinants of the defecation volume threshold. For the defecation urgency threshold, the independent factors included high disease duration (coef. − 0.358, P = 0.017) and high fecal calprotectin level (coef. − 0.499, P = 0.001). Similarly, the sole independent factor identified for the maximum capacity threshold was high fecal calprotectin (coef. − 0.691, P = 0.001).ConclusionRecurrent UC patients had increased rectal sensitivity and compromised anorectal function, which significantly impacted quality of life. Proactively managing the disease, reducing UC relapses, and addressing anxiety are effective measures for improving anorectal function in these patients.

Multimorbidity, health Literacy, and quality of life among older adults in an urban slum in India: a community-based cross-sectional study

BackgroundIndia is experiencing a rising burden of chronic disease multimorbidity due to an aging population and epidemiological transition. Older adults residing in urban slums are especially vulnerable due to challenges in managing multimorbidity amid deprived living conditions. This study aimed to assess the prevalence of multimorbidity, associated health literacy, and quality of life impact in this population.MethodsA community-based cross-sectional study was conducted among 800 adults aged ≥ 65 years in an urban slum in Gujarat, India. Data on sociodemographics, physical and mental health conditions, health literacy (HLS-SF-47), quality of life (Short Form-12 scale), and social determinants of health were collected. Multimorbidity is ≥ 2 physical or mental health conditions in one person.ResultsThe prevalence of multimorbidity was 62.5% (500/800). Multimorbidity was significantly associated with lower physical component summary (PCS) and mental component summary (MCS) scores on the SF-12 (p < 0.001). After adjusting for sociodemographic variables, the odds ratio of 0.81 indicates that for every 1 unit increase in the health literacy score, the odds of having multimorbidity decrease by 19%. Older age within the older adult cohort (per year increase) was associated with greater odds of multimorbidity (AOR 1.05, 95% CI 1.02–1.09). Physical inactivity (AOR 1.68, 95% CI 1.027–2.77) and lack of social support (AOR 1.57, 95% CI 1.01–2.45) also increased the likelihood of multimorbidity.ConclusionThere is a substantial burden of multimorbidity among urban slum dwellers aged ≥ 65 years in India, strongly linked to modifiable risk factors like poor health literacy and social determinants of health. Targeted interventions are essential to alleviate this disproportionate burden among urban slum older adults.

The Impact of Symptomatic Chronic Venous Insufficiency (CVI) on Health-Related Quality of Life (HR Qol) in A Multi-Ethnics Society in a Developing Nation

INTRODUCTION: Chronic venous insufficiency (CVI) is a common condition especially among those of advance age that is often neglected. As the disease severity progresses, it increases the healthcare cost and resources required, while diminishing the quality of life of the persons. Health-related Quality of Life (HRQoL) among CVI patients begins to decline once the symptom starts to appear, and reduces it further as the symptoms worsens. MATERIALS AND METHODS: This is a prospective, multi-centred, cross-sectional study on consenting symptomatic CVI patients who presented to the International Islamic University of Malaysia (IIUM) teaching hospital in Pahang, Malaysia. The diagnosis of CVI was confirmed on duplex imaging. Clinical grading was performed using Clinical Etiologic Anatomic Pathophysiologic (CEAP) classification. Patients completed generic validated Malay language Short Form 36 (SF36) HRQoL instrument. RESULTS: One hundred and ten patients (62% male) with a mean age of 57 years, Malays (60%), Chinese (25%) and Indian (15%) were recruited. The most frequent CVD symptoms reported were pain (42%). The clinical, aetiological, anatomical, and pathophysiological (CEAP) classification placed most patients in the C2 class (34%). Apart from partaking in social functions, all other elements of mental and physical health component of SF 36 showed a marked deterioration as the disease progressed. CONCLUSIONS: We found a significant decline in the HRQoL among symptomatic CVI patients presenting to IIUM hospital in a multi-ethnic developing country.