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Purpose: Few digital interventions target patients with advanced cancer. Hence, we feasibility-tested Finding My Way-Advanced (FMW-A), a self-guided program for women with metastatic breast cancer. Methods: A single-site randomised controlled pilot trial was conducted. Participants were recruited through clinicians, professional networks, and social media and randomised to intervention or usual-care control. Participants were randomly allocated to either the intervention (FMW-A; a 6-week, 6-module CBT-based online self-directed psychosocial program for women with MBC + usual care resources) or control (usual care resources: BCNA’s Hope and Hurdles kit). Feasibility outcomes included rates of recruitment, uptake, engagement, and attrition. Distress, QOL, and unmet needs were evaluated for signals of efficacy, and qualitative feedback was collected to assess acceptability. Results: Due to COVID-19 and funding constraints, the target recruitment of 40 was not reached (n = 60 approached; n = 55 eligible; n = 35 consented). Uptake was high (n = 35/55; 63.6%), engagement modest (median 3/6 modules per user), and attrition acceptable (66% completed post-treatment). Efficacy signals were mixed: compared to controls, FMW-A participants experienced small improvements in fear of progression (d = 0.21) and global QOL (d = 0.22) and demonstrated a trend towards improvements in cancer-specific distress (d = 0.13) and role functioning (d = 0.18). However, FMW-A participants experienced small-to-moderate deteriorations in general distress (d = 0.23), mental QOL (d = 0.51), and social functioning (d = 0.27), whereas controls improved. Qualitatively, participants (n = 4) were satisfied with the program, perceived it as appropriate, but noted some sections could evoke transient distress. Conclusion: The study demonstrated feasibility (high uptake and acceptable retention) and generated realistic recruitment estimates. While FMW-A appears promising for targeting cancer-specific distress and fear of progression, the mixed findings in quality of life and general distress warrant further revisions and testing. [ABSTRACT FROM AUTHOR]

Background: Fat mass index (FMI) is a body composition indicator that reflects body fat content. Laparoscopic sleeve gastrectomy (LSG) is widely performed in patients with obesity. Objective: This study aimed to evaluate the value of the FMI in predicting weight loss effect and quality of life early after LSG. Material and Methods: From January 2014 to July 2022, the clinical data and computed tomography (CT) images of patients who underwent LSG at a tertiary referral teaching hospital were analyzed. Body composition indicators were calculated using the SliceOmatic software. Achieving initial body mass index within 6 months postoperatively was defined as early eligible weight loss (EEWL). The relationship between body composition and EEWL was analyzed. Results: A total of 243 patients were included. Receiver operating characteristic (ROC) curve analysis showed that the predictive value of the FMI for EEWL in patients after LSG was higher than that of other indicators (all P < 0.05; area under the curve = 0.813). The best FMI cut-off point was 13.662. Accordingly, the patients were divided into the high-FMI group and low-FMI group. The %EWL and BMI of patients in the low-FMI group at 1, 3, 6, 9, 12, and 24 months after surgery were better than those in the high-FMI group (all P < 0.001). Patients in the low-FMI group had higher BAROS (Bariatric Analysis and Reporting Outcome System) scores than those in the high-FMI group (P < 0.001). Conclusion: Compared with other body composition indicators, FMI can effectively predict the early effect of weight loss and quality of life after LSG. [ABSTRACT FROM AUTHOR]

Background: This study aims to evaluate the surgical safety and effectiveness of gasless transaxillary endoscopic thyroidectomy (GTET), assess patients' shortterm perceptions and long-term outcomes, and delineate the learning curve and key surgical techniques of the operators. Materials and methods: Clinicopathological and postoperative follow-up data from patients with unilateral thyroid cancer in the same period were collected. These patients were divided into the GTET group and the traditional open surgery group to compare and analyze the differences and explore the factors affecting the learning curve of GTET. Results: Patients who chose GTET had better general health and thyroid conditions than those in the open group, and the quality of postoperative life was better in the GTET group than in the open group, with the main differences between the two groups being appearance and neck and shoulder function. The GTET learning curve in this study peaked at 19 cases, with slight differences between left and right, and a larger sample size is still needed to explore the factors affecting the learning curve. Conclusions: GTET has a reliable safety and efficacy profile for patients with unilateral thyroid cancer. Intraoperative nerve monitoring (IONM) techniques require some adaptation in GTET. In some respects, patients' postoperative experience and quality of life are superior to those of conventional open surgery. There is a learning curve for GTET, but large samples are still needed to explore its true significance. [ABSTRACT FROM AUTHOR]

Background: Skull base meningiomas are chronic conditions that can present with a wide variety of symptoms ranging from near normalcy to chronic and prolonged disability and also often worsen by treatment-related sequelae. Hence, it is necessary to investigate the quality of life (QOL) among patients with skull base meningioma and evaluate the impact of microsurgery on their overall well-being. Methods: In this prospective observational study, 36 patients undergoing microsurgery for skull base meningioma were assessed for QOL using SF-36 questionnaires. Results were compared to the QOL of 36 patients with a non-neurosurgical chronic disease (diabetes mellitus) and 36 matched healthy volunteers. This study commenced from 2019 and ended in 2022. Results: All QOL parameters in skull base meningioma patients were preoperatively significantly worse than in the healthy population. The most affected QOL domain were role limitation due to physical health (RLPH) and role limitation due to emotional problems (RLEP). Within one year after surgery, skull base meningioma patients showed a significant improvement of all QOL parameters. The domains of physical functioning (PF), emotional well-being (EWB), body pain (BP) and general health (GH) improved to similar values as their matched healthy controls. However, social functioning (SF), RLPH, and RLPE remained still significantly affected. Compared to chronic diabetic patients, the domains PF, EWB, BP, and GH showed significantly better QOL values after one year in skull base meningioma patients, but RLEP and RLPH were worse. Conclusion: Microsurgery can significantly improve all QOL domains in skull base meningioma patients within one year. Physical activity, overall health, and mental well-being have been observed to return to even normal levels. While certain QOL domains may still be affected post-microsurgery, it is evident that microsurgery can yield a substantial improvement, ultimately raising QOL to levels surpassing those seen in other non-neurosurgical chronic diseases, such as diabetes mellitus. [ABSTRACT FROM AUTHOR]

Purpose: The aim was to investigate sexual function and fertility in female adults operated on for anorectal malformations (ARM). Methods: This was a cross-sectional questionnaire-based study including female adult patients treated for ARM at our institution between 1994 and 2003. Sexual function in females was assessed using the Profile of Sexual Function (PFSF). Additional questions regarding fertility were answered by the participants. Patient characteristics were retrospectively retrieved from the medical records and descriptive statistics were used for analysis. Sexual function outcomes were compared to a control group from a previously published group of females. Composite outcome analysis was performed using previously published data to determine the potential impact of bowel function and health-related quality of life on sexual function. The ethics review authorities approved the study. Results: A total of 14 of 30 (46.7%) females responded to the questionnaires and had a mean age of 21.1 years (range 18–26). No association was found between PFSF and age or bowel function (Bowel Function Score), however, a strong correlation was found between PFSF and health-related quality of life (HRQoL) with a Spearman correlation of ρ 0.82 (p = 0.0011). The general satisfaction question was strongly associated with their total PFSF score (ρ = 0.71, p = 0.0092). Except for the "desire" item, the females in this cohort did not have significantly worse sexual function than the control population(p = 0.015). Ten of fourteen (71.4%) females had had their sexual debut at a mean age of 16.3 years and two of these women (20%) have been pregnant. All females had had menarche at a mean age of 12.7 years. Conclusion: Sexual function in adult females was comparable to healthy controls except for the "desire" item where the cohort reported poorer outcomes. The cohort's sexual function had a direct association with their reported HRQoL where individuals with worse HRQoL also reported poorer sexual function. Level of evidence: III [ABSTRACT FROM AUTHOR]

Creative art-based therapies (cABT) provide a creative non-pharmacological approach in therapy to people with dementia and can potentially improve their personhood. This review identified cABT that focused on the personhood of persons with dementia living in residential facilities and determined how quality of life (QOL) or well-being were assessed. Searches were conducted on PubMed, Medline (Ovid), EMBASE, CINAHL (EBSCO), PsycINFO (OVID), and SCOPUS databases, to gather articles from 2010 to 2020. In this review, cABT encompassed art, music, and theater/drama. An overall of five studies were included and, in these studies, art programs were seen in the form of water painting, an intergenerational art program, live music performances, and medical clowns. QOL and well-being were assessed using the Greater Cincinnati Well-being Observation Tool, a QOL checklist, and transcribed from conversations to develop themes on participation and mental well-being. Personhood was promoted through self-expression and self-creativity. Increased number of participants are required for future cABT to further understand the impact the arts may have on personhood, on the QOL and well-being, and enhancing creativity for people with dementia. [ABSTRACT FROM AUTHOR]

Objectives ANCA-associated vasculitis (AAV) is associated with significant morbidity, fatigue, pain and poor health-related quality of life (HRQoL). This review aims to assess the comprehensiveness of existing patient reported outcome measures (PROMs) used in AAV and identify associations with poorer HRQoL outcomes. Methods A literature review of studies using PROMs, including those labelled HRQoL in people with AAV as a primary or secondary study outcome were screened and reviewed up to July 2023. Quality was assessed using the Critical Appraisal Skills Programme. Results A total of 30 articles were included which utilised 22 different PROM tools, 76.7% (n  = 23) used the SF-36 or a variation as a generic measure of health status and or HRQoL. Two studies developed a disease-specific PROM. The AAV-PRO showed good psychometric properties but potential limitations in capturing all relevant aspects of the disease experience for AAV patients. Factors associated with poorer HRQoL included: neurological and sinonasal involvement, women and younger patients. A total of 86.6% of studies showed no meaningful relationships between the SF-36 and BVAS, VDI or disease duration. Depression and anxiety were common and socioeconomic factors such as unemployment were significantly associated with poorer mental health outcomes. Glucocorticoids were found to be independently associated with worse SF-36 scores. Conclusion Generic PROMs are useful in measuring significant changes but lack sensitivity to specific symptoms and unique AAV-related issues, while existing disease-specific PROMs have some limitations and may not fully capture the AAV patient's perspective on disease and treatment burden. [ABSTRACT FROM AUTHOR]

Background: Radiotherapy (RT) is used in head and neck squamous cell carcinoma (HNSCC) with excellent effectiveness, but it is burdened by important side effects, which may negatively impact patients’ quality of life (QoL). In particular when associated with chemotherapy (CT), that has a radiosensitising effect (and its own toxicities), it is responsible for several adverse events, causing social discomfort and lower QoL, in patients who are already experiencing several tumor-related discomforts. Prehabilitation is a healthcare intervention consisting of several specialist visits prior to the start of treatment, with the aim of improving the patient’s health status, resolving symptoms that interfere with treatment and impact QoL, and finally to better avoid or overcome complications. Of all cancer patients, HNSCC patients are among those who could benefit most from prehabilitation, both because of the high number of symptoms and toxicities and their difficult management. Despite this and the emerging data, prehabilitation is not often considered for the majority of patients undergoing (C)RT. In this review, we tried to understand what are the main areas in which interventions can be made prior to the (C)RT start, the possible side effects of the treatment, the effectiveness in their prevention and management, and the impact that prehabilitation may have in adherence to therapy and on the principal survival outcomes, providing important guidance for the planning of future studies. Evidences and conclusions: Although there is no strong data evaluating multidisciplinary prehabilitation strategies, evidence shows that optimizing the patient’s health status and preventing possible complications improve the QoL, reduce the incidence and severity of adverse events, and improve treatment adherence. While cardiology prehabilitation is of paramount importance for all patients undergoing concomitant CRT in the prevention of possible side effects, the remaining interventions are useful independently of the type of treatment proposed. Geriatricians have a key role in both elderly patients and younger patients characterized by many comorbidities to comprehensively assess health status and indicate which treatment may be the best in terms of risk/benefit ratio. Collaboration between nutritionists and phoniatrics, on the other hand, ensures adequate nutritional intake for the patient, where possible orally. This is because optimizing both body weight and muscle mass and qualities has been shown to impact key survival outcomes. Finally, HNSCC patients have the second highest suicide rate, and the disease has side effects such as pain, dysfiguration, and sialorrhea that can reduce the patient’s social life and create shame and embarrassment: A psychological intake, in addition to the usefulness to the patient, can also provide current support to caregivers and family members. Therefore clinicians must define a personalized pathway for patients, considering the characteristics of the disease and the type of treatment proposed, to optimize health status and prevent possible side effects while also improving QoL and treatment adherence. [ABSTRACT FROM AUTHOR]

Objective: To design and validate a disease‐specific quality of life instrument for Meniere's disease. Methods: We used a sequential process of expert input, patient focus groups, and analyses of responses to draft questionnaires to create a 24‐item Meniere's disease quality of life (MenQOL) instrument. The MenQOL and the SF‐36v2 were administered to a cohort of 50 patients with Meniere's disease and 60 comparison patients with tinnitus, vertigo, or hearing loss from other causes identified at a tertiary academic center. We performed exploratory factor analysis, Cronbach's α, between group comparisons of total MenQOL scores, and regression analyses between the MenQOL and SF‐36v2 to evaluate the instrument's factor structure, internal consistency, face validity, and external validity. Segregation of the instrument into domains was assessed by exploratory factor analysis. Results: Exploratory factor analysis revealed that the MenQOL has a single domain. Cronbach's α = 0.914 indicated high internal consistency for the instrument as a whole. Mean MenQOL scores showing significantly worse quality of life among patients with Meniere's disease than comparison participants (52.5 ± 15.8 vs. 43.2 ± 12.6; p = 0.0051), indicating good construct validity. Significant inverse relationships in bivariate linear regressions between total MenQOL scores and SF‐36v2 physical (slope = −0.94, p < 0.0001) and mental (slope = −1.16, p < 0.0001) composite scores showed acceptable concurrent validity. Conclusions: We have described the initial development of the MenQOL, a simple, valid patient‐reported outcome measure that, subject to further study, may be used to assess the effects of treatment on disease‐specific quality of life in patients with Meniere's disease. Level of Evidence: 3 Laryngoscope, 134:4351–4357, 2024 [ABSTRACT FROM AUTHOR]

Background: This study aimed to assess the factors influencing health-related quality of life (HRQoL) in patients experiencing adverse drug reactions (ADRs) at a tertiary care public sector hospital. A cross-sectional study was conducted over a period of 18 months, and included both male and female patients aged 18 years and above. Patients who visited the outpatient and inpatient departments with complaints associated with ADRs were included in this study. HRQoL data were collected using the EuroQol—5 Dimension—5 Level (EQ-5D-5L) questionnaire to assess five dimensions of health on a five-level scale. Descriptive statistics, t-tests, and analysis of variance were used to analyze the data. Multivariate regression analysis was performed to identify the potential determinants of HRQoL. Results: A total of 316 patients were included in the study among these participants, of which 54% were female, and 65% were from rural areas. The majority (68%) of the patients had moderately severe ADRs, and 63% of the participants had an income < 2.5 lakh Indian rupees (3009 USD). The mean EQ-5D-5L and EuroQoL Visual Analog Scale (EQ VAS) scores of the study participants were 0.714 and 69.73, respectively. The variables ADR severity, income, and age showed a significant difference (p < 0.05) in HRQoL. Conclusion: This study provides insights into HRQoL among patients with ADRs and identifies the determinants of HRQoL. The findings of this study will contribute to improving patient-centered care and optimizing patient outcomes. [ABSTRACT FROM AUTHOR]

Recombinant human growth hormone therapy (rhGH) has been widely accepted as the safe treatment for short stature in children with such genetic syndromes as Prader–Willi syndrome and Turner or Noonan syndrome. Some patients with short stature and rare genetic syndromes are treated with rhGH as growth hormone-deficient individuals or as children born small for their gestational age. After years of experience with this therapy in syndromic short stature, it has been proved that there are some aspects of long-term rhGH treatment beyond growth promotion, which can justify rhGH use in these individuals. This paper summarizes the data of a literature review of the effects of rhGH treatment beyond growth promotion in selected genetic syndromes. We chose three of the most common syndromes, Prader–Willi, Turner, and Noonan, in which rhGH treatment is indicated, and three rarer syndromes, Silver–Russel, Kabuki, and Duchenne muscular dystrophy, in which rhGH treatment is not widely indicated. Many studies have shown a significant impact of rhGH therapy on body composition, resting energy expenditure, insulin sensitivity, muscle tonus, motor function, and mental and behavioral development. Growth promotion is undoubtedly the primary benefit of rhGH therapy; nevertheless, especially with genetic syndromes, the additional effects should also be considered as important indications for this treatment. [ABSTRACT FROM AUTHOR]

PurposeMethodsResultsConclusionBirdshot chorioretinitis (BSCR) is an ocular HLA-related disease with variable clinical progression. We examine the quality of life (QOL) of BSCR individuals aged ≥80 years, providing insights into the long-term disease impact.We utilized data from the CO-BIRD cohort (ClinicalTrials.gov Identifier: NCT05153057) conducted at Hôpital Cochin in Paris, France, focusing on BSCR patients aged ≥80. The main outcome was vision-related QOL using the National Eye Institute Visual Function Questionnaire-25 (NEI VFQ-25). We used Spearman correlation to explore the impact of better BCVA and MD on the composite score, and the Wilcoxon test to evaluate specific visual symptoms’ effects.The study included 35 patients with a mean age of 83.9 ± 3.7 years, 74.3% of whom received systemic immunosuppression. The mean composite score was 58 ± 30, with a median of 75 (23–79). The lowest subscores were driving capacity (38 ± 38), mental health (49 ± 33), and role difficulties (50 ± 35), while the highest were for ocular pain (70 ± 25) and social function (70 ± 38). Decimal BCVA below 0.5 and MD below −6 dB were associated with lower subscores. BCVA and MD were strongly correlated with the composite score (R = 0.67). Symptoms of poor color and blurry vision were significantly associated with lower composite score (p < 0.005).Most BSCR patients over 80 in our cohort maintained sufficient vision for daily activities. The high standard deviation and wide range of VFQ-25 results reflect the heterogeneity of visual outcomes among elderly BSCR patients. [ABSTRACT FROM AUTHOR]

Background: End-stage renal disease (ESRD) poses a significant burden globally and in India. However, access to treatment remains limited due to resource and cost constraints. This study aimed to evaluate the health-related quality of life (HRQoL) and economic burden among haemodialysis patients. Methods: A descriptive cross-sectional study using European Quality of life, EQ-5D-5L, to measure health-related quality of life across 5 domains, i.e. mobility, self-care, usual activities, pain/discomfort and anxiety/depression, was administered, across three settings—government dialysis centre, private dialysis centre and charity based dialysis centre. The health utility values were also calculated. Also, the costs incurred in dialysis were done. Results: The mean (± SD) age of the participants was 55 (± 11) years, the majority of the participants were male (n = 61), 80% (n = 64) of the participants were employed before and 40% of them had lost a job, due to the morbidity of the disease. Upon analyzing the EQ-5D-5L data, it is inferred that all five domains were the same across all three setups. The direct cost incurred on the haemodialysis ranged from INR.600 to INR.3500 per month, and the indirect cost ranged fromINR.50 to INR. 3000, which is borne by the participants, in about 70% of the cases. Chief Minister Health Insurance Scheme was found to be extremely useful, wherein only 30% (n = 25) of the study participants (n=81) were insured beneficiaries. Conclusion: HRQoL was moderately impaired, and treatment posed substantial financial hardship among hemodialysis patients. Expanding access to decentralized and community-based care models could help address the challenges of regular treatment and lost productivity. [ABSTRACT FROM AUTHOR]

Quality of life (QoL) has become an essential goal of contemporary healthcare and protective psychological resources. Individual life expectancy has increased with improved social progress, healthcare, nutrition and advanced health‐related technologies. However, research often overlooks the significant impact of social change and generational effects on the QoL of the ageing population. As people age, optimising opportunities for health, participation and safety to improve QoL has become crucial for society, policymakers and researchers. This study utilised a cross‐temporal meta‐analysis to investigate changes in the QoL among older adults from 1999 to 2017. Fifty two studies (N = 34,844) that used the Brief Health Status Survey Scale (SF‐36) were analysed. Direct and lagged correlation analyses were performed to examine the relationship between changes in the QoL of older adults and the macro social environment. The findings showed that QoL decreased by 7.94 points (d = −0.50) over the past 18 years. Economic status, social connectedness, and general threats were significant predictors of declining QoL among older adults. Please refer to the Supplementary Material section to find this article's Community and Social Impact Statement. [ABSTRACT FROM AUTHOR]

Background: With limited pharmacological interventions, post-COVID-19 condition is a clinical challenge, and supplementary therapies are essential for symptom relief and enhancing quality of life (QoL). In our prospective observational study, we aimed to evaluate the impact of Salus per aquam (Spa) therapy on post-COVID-19 symptoms and QoL in individuals who suffer from chronic joint, musculoskeletal, skin, and/or respiratory conditions. Methods: A total of 159 individuals undergoing Spa therapy were enrolled, and 78 of them had post-COVID-19 symptoms, assessed using Visual Analogue Scale (VAS) and modified British Medical Research Council Questionnaire (mMRC-DS scales), as well as the Short Form 36 Health Status Survey (SF-36) questionnaire for QoL. Results: Spa therapy significantly reduced most post-COVID-19 symptoms, especially chronic fatigue, pain, brain fog, and persistent cough (all p < 0.05), as well as physical (+72%) and emotional (+66%) limitations. When stratified by sex, males showed a greater improvement from baseline, while females consistently displayed a higher amelioration in all QoL dimensions. Moreover, full vaccination with 3–4 doses significantly protected against SARS-CoV-2 re-infections and post-COVID-19 development (p < 0.05). Conclusions: Spa therapy demonstrated effectiveness in mitigating post-COVID-19 symptoms and enhancing QoL in patients suffering from chronic diseases. [ABSTRACT FROM AUTHOR]

Simple Summary: Very few studies have proven chemotherapy efficacy against canine mammary carcinomas. As a result, we still lack efficient standardized protocols, which do exist in human cases, to treat these carcinomas or to adapt treatment according to the aggressiveness of the tumor in dogs. In this case report, we describe a highly aggressive mammary carcinoma; we applied an intensive treatment combining radical surgery and intensive adjuvant chemotherapy, which included metronomic and maximal-tolerated-dose chemotherapy, nonsteroidal anti-inflammatory drugs and inhibitors of tyrosine kinase. We obtained the informed consent of the owner, who was aware of the poor prognosis without treatment and of the fact that this combinatorial treatment had not been published yet. The treatment enabled this one dog to live for 218 days with very good quality of life. A large-scale prospective study will be needed to confirm this result. Very few studies, often with very small cohorts, have proven chemotherapy efficacy against canine aggressive mammary carcinomas, either in terms of metastasis or median survival, in dogs after surgery and chemotherapy, with such outcomes not being confirmed by other studies. As a result, we lack efficient standardized protocols, which exist in human cases, according to the grade and stage of the tumor in dogs. In this case report, we describe a relapsing grade III solid mammary carcinoma evolving into prominent lymphatic intravascular invasion with multifocal nodal extension (stage IV); we applied an intensive treatment combining radical surgery and intensive adjuvant chemotherapy. The latter combined carboplatin maximal-tolerated-dose chemotherapy, with doses adjusted as necessary, and metronomic chemotherapy with firocoxib, toceranib and chloraminophene, progressively administered and carefully monitored. Adapting the doses prevented adverse events and resulted in 218 days of survival with good quality of life. To our knowledge, this is the first description of such a treatment combination. Our result should be confirmed with a large-scale prospective study. [ABSTRACT FROM AUTHOR]

Background In today’s world, alcoholism poses a significant global public health concern. Persistent alcohol use not only impacts the individual but also exerts effects on family members. The spouse of alcoholics often experiences significant trauma and stress in their domestic environment, leading to profound psychological problems in them. The spouse’s ability to cope efficiently seems to be affected by the psychological distress and consequently, their overall quality of life is compromised. Aim This study aimed to assess the psychological distress, quality of life and coping styles in alcoholic spouses. Methods This cross-sectional study was carried out at Rama Medical College, Hospital and Research Centre, Kanpur among the wives of patients fulfilling the alcohol-dependence criteria as per ICD-10 DCR guidelines. Patients attending the OPD of the psychiatry department were recruited serially till the required sample size was reached. The total sample consists of 50 participants. Socio-demographic information was obtained through a semi-structured questionnaire. Kessler Psychological Distress Scale, WHOQOL-BREF, and Brief COPE were administered to participants to assess psychological distress, quality of life and coping mechanisms. Results and Discussion According to the study, it was found that the majority of the participants had moderate levels of psychological distress, all 4 domains of quality of life were affected. It was observed that spouses predominantly leaned towards employing emotion-focused coping strategies, which encompassed seeking emotional support, acceptance, and turning to religion for solace. Conclusion Alcohol dependence syndrome not only affects individuals but also has a profound impact on their families. The spouse of individuals struggling with alcoholism may employ diverse coping mechanisms to mitigate the negative impact of their partner’s drinking habits. It's crucial to develop interventions focused on easing their distress and enhancing their mental well-being and overall quality of life. [ABSTRACT FROM AUTHOR]

Background In the healthcare domain, the indispensable role of caregivers in patient support is utmost. The family plays a crucial role in the care of a mentally and chronically ill patient. As these conditions can significantly impact the lives of patients, they also exert a profound influence on those who provide care, affecting their burden and quality of life. Aim This study aimed to evaluate the burden and Quality of Life among caregivers of Bipolar Disorder and Tuberculosis Patients. Methods This cross-sectional study involved primary caregivers of patients diagnosed with Bipolar Affective Disorder according to ICD-10 guidelines and of chronic medical conditions such as Refractory tuberculosis, and Drug-Resistant Tuberculosis. The study took place at the Department of Psychiatry, Rama Medical College, Hospital, and Research Centre, Kanpur. The sample was calculated using scientific statistical tools. The patient's caregivers were recruited from the Department of Psychiatry and the Department of TB & Chest till the required sample size was met and were categorized into two groups: Group 1 comprised 40 caregivers of bipolar patients, and Group 2 included caregivers of tuberculosis. Sociodemographic information was obtained through a semi-structured questionnaire. The Montgomery Borgatta Caregiver Burden Scale and Quality of Life WHOQOL-BREF were administered to both groups to assess the burden and their Quality of life. Results and discussion According to the burden scale caregivers of Group 1 face more burden compared to Group 2 caregivers and their Quality of Life is also more affected in all the four domains. The result is statistically significant in all the dimensions. Conclusion Our study concluded that caregivers in both groups experience significant burden that adversely affect their quality of life. Therefore, strategies should be developed to support and psychoeducating caregivers to help them cope better and enhance their Quality of life. [ABSTRACT FROM AUTHOR]

Controlled outcomes into adulthood for females with anorectal malformation (ARM) are still scantily studied. The primary aim was to investigate bowel function, bladder function and health-related quality of life (HRQoL) in females operated for ARM. A cross-sectional questionnaire-based observational study was performed including females treated for ARM at our institution between 1994 and 2017. The bowel function was assessed with bowel function score (BFS) and urinary tract function with lower urinary tract symptoms (LUTS) questionnaires. HRQoL was investigated with validated age-dependent questionnaires. Patient characteristics were retrospectively retrieved from the medical records and descriptive statistics were used for analysis. HRQoL outcomes were compared with normative data whilst bowel and bladder function outcomes were compared to age-matched female controls. Forty-four (41.5 %) of 106 females responded to the questionnaires. Ten of 29 patients (34.5 %) aged 4–17 years and 4 of 14 patients (28.6%) aged ≥18 years, reported a well-preserved bowel function (BFS≥17). Constipation issues decreased with age. BFS was similar in patients with perineal and vestibular fistulas. Thirty-six (83.7%) of the patients had at least one LUTS. No adult patients had issues with involuntary urinary leakage. Adults scored significantly (p = 0.004) lower than normative data regarding HRQoL, while children and adolescents scored comparably to norm data. Only 28.6 % of the adult patients reported a well-preserved bowel function, similar to the proportion reported by children 4–17 years of age. Adult patients appear to have a diminished HRQoL, however the correlation with BFS was weak. III. • What is currently known about this topic? Functional and health-related quality of life outcomes into adulthood for females with anorectal malformation (ARM) are still scantily studied. • What new information is contained in this article? Roughly 30 % of the adult patients reported a well-preserved bowel function, similar to the proportion reported by children and adolescents. Adult patients appear to have a diminished HRQoL, however, the correlation with BFS was weak. [ABSTRACT FROM AUTHOR]

Quality of life (QoL) focuses on a person's ability to live a fulfilling life. It helps in determining successful aging in the elderly population. Because of a scarcity of information regarding predictors of QoL in the elderly population in developing countries, this study was undertaken to assess the overall QoL and its predictors in the elderly population in an urban setting of Bangladesh. In this cross-sectional study, 275 participants were enrolled by systematic sampling at the outpatient department of a tertiary care hospital in Dhaka, Bangladesh. Data were collected by using a pretested semi-structured standard questionnaire for QoL (OPQOL-35). Pearson's correlation was used to assess the association between QoL and sociodemographic factors. Multivariate linear regression was conducted to identify predictors of QoL, after controlling for potential confounders. The median age of the participants (n = 275) was 65 years (range, 60 to 85; 25th and 75th percentile, 60 and 68, respectively). The majority (78%) of them were married, and 20% were widowed or divorced. The median score of QoL was 113 (25th and 75th percentile, 101 and 124, respectively). Most of the participants had very poor (bad as can be) or poor (bad) QoL. Only 7.3% were observed to have "good" QoL (scores 140 or more). Females had significantly poorer QoL scores compared to males (p < 0.001). Age, gender, educational status, smoking, and sleep duration significantly predicted QoL in a multiple regression analysis. In conclusion, the QoL of the elderly individuals in Bangladesh was very poor or poor. Future research should focus on service-oriented interventions, especially targeting women. Counseling elderly people to enhance their quality of life may include improving sleep patterns, healthy diets, regular exercise, and caring for their mental health. [ABSTRACT FROM AUTHOR]

Abstract Background This study aimed to assess the factors influencing health-related quality of life (HRQoL) in patients experiencing adverse drug reactions (ADRs) at a tertiary care public sector hospital. A cross-sectional study was conducted over a period of 18 months, and included both male and female patients aged 18 years and above. Patients who visited the outpatient and inpatient departments with complaints associated with ADRs were included in this study. HRQoL data were collected using the EuroQol—5 Dimension—5 Level (EQ-5D-5L) questionnaire to assess five dimensions of health on a five-level scale. Descriptive statistics, t-tests, and analysis of variance were used to analyze the data. Multivariate regression analysis was performed to identify the potential determinants of HRQoL. Results A total of 316 patients were included in the study among these participants, of which 54% were female, and 65% were from rural areas. The majority (68%) of the patients had moderately severe ADRs, and 63% of the participants had an income

Abstract Background End-stage renal disease (ESRD) poses a significant burden globally and in India. However, access to treatment remains limited due to resource and cost constraints. This study aimed to evaluate the health-related quality of life (HRQoL) and economic burden among haemodialysis patients. Methods A descriptive cross-sectional study using European Quality of life, EQ-5D-5L, to measure health-related quality of life across 5 domains, i.e. mobility, self-care, usual activities, pain/discomfort and anxiety/depression, was administered, across three settings—government dialysis centre, private dialysis centre and charity based dialysis centre. The health utility values were also calculated. Also, the costs incurred in dialysis were done. Results The mean (± SD) age of the participants was 55 (± 11) years, the majority of the participants were male (n = 61), 80% (n = 64) of the participants were employed before and 40% of them had lost a job, due to the morbidity of the disease. Upon analyzing the EQ-5D-5L data, it is inferred that all five domains were the same across all three setups. The direct cost incurred on the haemodialysis ranged from INR.600 to INR.3500 per month, and the indirect cost ranged fromINR.50 to INR. 3000, which is borne by the participants, in about 70% of the cases. Chief Minister Health Insurance Scheme was found to be extremely useful, wherein only 30% (n = 25) of the study participants (n=81) were insured beneficiaries. Conclusion HRQoL was moderately impaired, and treatment posed substantial financial hardship among hemodialysis patients. Expanding access to decentralized and community-based care models could help address the challenges of regular treatment and lost productivity.

Purpose: The endoscopic endonasal approach (EEA) has become the preferred treatment for pituitary tumors, with minimal sinonasal morbidity. However, patients with Cushing's disease (CD) may represent a subgroup with prolonged impairment of sinonasal quality of life (QOL). Methods: We retrospectively identified patients with CD who underwent EEA at our institution. Control patients with non-functional tumors were matched by age, gender, and extent of EEA. The primary outcome was post-operative 22-item Sino-Nasal Outcome Test (SNOT-22) scores. Results: Ten patients with CD met the selection criteria and 20 controls were selected for comparison. Nine of the CD patients achieved persistent endocrinologic remission post-operatively. Comparing the CD and control groups, there was no difference in post-operative SNOT-22 score at 1 or 3 months. At 6 months, SNOT-22 scores were significantly worse in the CD group (27.4 ± 21.6 vs. 2.8 ± 2.3, P =.039). SNOT-22 scores improved to normal from 1 to 6 months in the control cohort (P =.007), but not in the Cushing's group (P =.726). Morbidity was present across all SNOT-22 domains, but was highest in the sleep domain (P =.023). Only morbidity in the facial domain improved over time (P =.032). Conclusions: Patients with CD have significantly prolonged postoperative sinonasal QOL impairment following EEA compared to patients with non-functioning tumors, who normalize within 6 months. In CD patients, only morbidity in the facial domain, likely related to post-operative pain and nasal packing, improved over time, while the sleep domain was the most affected. [ABSTRACT FROM AUTHOR]

Background: Even though the survival of people living with HIV/AIDS (PLWHA) has improved by ART, their lifestyles and quality of life are affected by several factors like family and community support, and their socio-economic status. Hence, this study was undertaken to estimate the quality of life of HIV/AIDS patients based on the World Health Organization Quality Of Life-Human Immunodeficiency Virus Brief (WHOQOL-HIV BREF) questionnaire and to assess the association of quality of life with socio-demographic variables. Materials and Methods: A cross-sectional study was conducted from April 2019 to December 2020 in a sample of 220 HIV/AIDS patients of age more than 18 years, taking treatment at ART center, Tertiary Care Hospital in Tirupati. The data were collected using a standardized instrument (WHOQOL-HIV BREF). Socio-demographic details of the subjects were also obtained. Data were analyzed using Epi info software 7.2.2.6 version. Results: The overall mean QOL score is 59.3 ± 10.3. The highest mean QOL observed in the physical domain and the most affected domain is the social relationship’s domain. Lower levels of QOL were seen in females, residing in rural areas, illiterates, separated/divorced, who does not reveal their HIV status to their family members, who does not have family support, and these are found to be significantly associated with QOL (P < 0.05). Conclusion: The most affected domain is social relationship’s domain. Age, residence, educational status, marital status, knowledge of HIV status to family members, and their family support were found to be significantly associated with QOL among PLWHA.

Background: Menopause is one of the most significant phases in the life of a woman which brings about various physiological changes called postmenopausal syndrome. A health programme catering to the needs of postmenopausal women is lacking in our health system. Methodology: A cross-sectional study was conducted in an urban health and training centre. Sample size of 171 was taken by simple random sampling. Women of age more than or equal to 45 and having 12 months of amenorrhea were enrolled in the study after obtaining their consent. Results: The mean age of menopause was found to be 45.31 years. In the vasomotor domain, the most common postmenopausal symptom was hot flushes (47.95%) followed by sweating (25.73%) while in the psychological domain it was seen that the most common symptom was feeling depressed down or blue (37.43%) followed by being dissatisfied with personal life, feeling anxious or nervous (36.26%) and being impatient with other people and feelings of wanting to be alone (34.50%). In physical domain, the most common symptom was ache in muscles and joints (92.98%) followed by low backache (86.55%), feeling tired or worn out (84.80%), decrease in physical strength (83.63%) and aches in the back of neck or head (81.87%). The other domain was the sexual domain in which the most common symptom was a change in sexual desire (93.57%) followed by avoiding intimacy (92.98%). Conclusion: It was found that the domain, most severely affecting quality of life was sexual followed by physical and psychological domain. Awareness should be created regarding the psychosocial, physical, nutritional and sexual needs of postmenopausal women.

Background: The global disease burden associated with bronchial asthma has continued to increase particularly among children. Asthma-related quality of life is a health related assessment of disease impact on patient and care givers. Aim: To determine the perceived quality of life (QOL) among children with bronchial asthma and their caregivers as well as the related factors. Subjects and methods: This was a prospective study of children diagnosed with bronchial asthma and the caregivers attending the Respiratory Clinic of the National hospital Abuja, Nigeria. Using the Paediatric Asthma Quality of Life Questionnaire (PAQLQ) and the Paediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ) information from the various domains was obtained. The PAQLQ 23 questions assessed the child physical domain (5), emotional (8) and social behaviors (10), and the PACQLQ 13 questions assessed the caregivers’ activity limitation domain (4) and emotional function (9).Mean QOL scores from each domain and overall scores were calculated based on a seven-point scale. A QOL score of 7 was reported as best with no impairment; score one as least and severest impairment; score 4 as mid point in the range from 2-6 of moderate degree impairment. Other information on the demographic biodata and clinical information from child and caregivers was also obtained. Results: Forty-three children and 43 caregivers each were enrolled, from August to December 2014. Patients were aged 7-15years; 25(58.1%) males, 18(41.9%) females; while caregiver’s were males 23(53.5%), females 20(46.5%), age range 21- 48years. 25(58.1%) caregivers were of middle- lower socio-economic status; 20(46.5%) children had persistent asthma, 22(51.2%) well controlled, 21(48.8%) partly controlled. Medication use were; none, 17 (39.5%); long acting beta2 agonist/ inhaled corticosteroids (LABA/ ICS), 13(30.2%); antihistamine, 8 (18.6%); leukotriene receptor antagonist (LTRA),5(11.6%). Overallmean QOL was 4.89(4.54- 5.24;95% CI) for the children and 4.6 (3.91- 4.82; 95% CI) for caregivers; correlation (R) 0.438 p=0.003.Mul t iple regression showed that females gender had significant impairment in mean QOL scores in the activity domain (p= 0.022), and those with poor control and severe asthma also had significant impairment in mean QOL (p

Abstract Background The quality of life (QoL) of nursing home residents is multifaceted and influenced by relationships, health, and activities, as per research in international literature. However, studies exploring QoL predictors considering varying cognitive impairment levels are limited in the French context. This study examined the impact of sociodemographic factors and cognitive impairment on the QoL in Alzheimer’s Disease Nursing Homes (QoL-AD NH) scale scores among French nursing home residents. It further identified predictors through responses to qualitative semi-structured interviews. These elements were integrated and compared to understand more comprehensively the multifaceted determinants influencing residents’ QoL. Methods This mixed methods study used a cross-sectional convergent design, and quantitative and qualitative studies were carried out simultaneously. Using a generalised linear model and Kruskal–Wallis tests, the quantitative strand (N = 151) measured QoL with the QoL-AD NH scale and examined sociodemographic predictors of QoL. The qualitative strand (N = 78) involved semi-structured interviews with residents across four levels of cognitive functioning (no, mild, moderate, and severe impairment) and explored their QoL determinants through thematic analysis. Both strands were then integrated and analysed. Results Mild cognitive impairment and depression negatively predicted QoL-AD NH scores. For specific items, residents with mild cognitive impairment had lower “Ability to keep busy daily” and “Current life in general” scores than residents without cognitive impairment. Qualitatively, family relationships were indispensable for QoL across groups, but those with mild cognitive impairment complained about a lack of activities in nursing homes. The analysis identified convergent predictors and enriched our understanding of daily occupation. Theory comparisons revealed assessment limitations in psychological well-being. Conclusions A mixed approach provided a nuanced understanding of QoL, highlighting vulnerable groups and areas for improving assessment. Combining the results from standardised instruments with semi-structured interviews allowed us to capture a fuller range of experiences. The findings suggest a need to reconsider QoL assessment tools for nursing home residents and policies to address their needs regardless of their cognitive levels. They highlight the value of mixed methods for researching this multifaceted field.

Nan Tang,1 Mengyue Pei,2 Huihui Liu,3 Jingru Chen,1 Youting Wang,1 Lei Xie,4 Junping Hu,3,5 Jing Wang,6 Yuan Gao1 1Department of Nursing, 1st Medical Centre of PLA General Hospital, Beijing, People’s Republic of China; 2School of Medicine, Henan Kaifeng College of Science Technology and Communication, Kaifei, Henan Province, People’s Republic of China; 3School of Nursing, Lanzhou University, Lanzhou, Gansu Province, People’s Republic of China; 4Renji Hospital, Shanghai Jiaotong University, Shanghai, People’s Republic of China; 5Department of Reproductive Medicine, The First Hospital of Lanzhou University, Lanzhou, Gansu Province, People’s Republic of China; 6Department of Gynecology, 1th Medical Centre of PLA General Hospital, Beijing, People’s Republic of ChinaCorrespondence: Jing Wang; Yuan Gao, Email wangjing353535@163.com; gaoyuanzd@163.comBackground: The purpose of this study was to explore the relationship between infertility-related stress and dyadic coping with quality of life (QoL) in couples with infertility issues, and verify gender differences and dyadic interactions in the associations between them.Methods: This cross-sectional study included 340 couples who were recruited from the First Affiliated Hospital of Lanzhou University between March 2022 and November 2022. The Fertility Problem Inventory, Dyadic Coping Inventory and FertiQoL were used to measure infertility-related stress, dyadic coping and QoL. The Actor-Partner Interdependence Model was used to analyze the effects of infertility-related stress and dyadic coping on the couple’s own QoL (actor effect) as well as on their partner’s QoL (partner effect).Results: Female patients perceived significantly lower levels of QoL and dyadic coping than those of husbands. There was no statistically significant difference in the infertility-related stress between wives and husbands. Husbands’ infertility-related stress had actor and partner effects on their own and their wives’ QoL, while wives’ infertility-related stress only had an actor effect on their own QoL. Husbands’ dyadic coping had both actor effect and partner effects on their own and their wives’ QoL, meanwhile wives’ dyadic coping had both actor effect and partner effects on their own and their husbands’ QoL.Conclusion: Husbands’ QoL was impacted by their own infertility-related stress, dyadic coping and their wives’ dyadic coping. Whereas wives’ QoL was influenced by infertility-related stress and dyadic coping from both their own and their spouses. Therefore, elevating the level of dyadic coping may contribute to improving QoL for both husbands and wives. Moreover, enhancing the ability to cope with infertility-related stress might be useful for husbands and indirectly contribute to wives’ QoL.Keywords: infertility, couple, infertility-related stress, dyadic coping, QoL

Objective: The quality of life (QOL) and psychological states of patients with pectus excavatum (PE) have yet to be well understood. This study aimed to evaluate the health-related QOL (HRQOL), psychological states, and personality traits of patients with PE, alongside the associations of these factors with the severity of PE. Methods: A cross-sectional evaluation was prospectively performed in patients scheduled to undergo PE repair surgery between July 2019 and April 2021. The primary outcome was the patients’ HRQOL, and the secondary outcomes were depression, social anxiety, self-efficacy, and personality traits. Results: In total, 129 patients were subjected to analyses. Patients' HRQOL had a lower role component summary score (mean ± standard deviation: 41.8 ± 12.8, P

Aims and Objectives: We sought to gain an understanding of the patient experience during their hospital stay for COVID‐19, and the impact of COVID‐19 on quality of life post discharge. Background: Symptoms of COVID‐19 include a persistent cough, dyspnoea and fatigue. Individuals with comorbidities such as cardiovascular disease have a higher risk of contracting COVID‐19 and approximately 20% of those diagnosed with COVID‐19 are admitted to hospital. Following discharge from hospital, 40% of patients report a worsened quality of life and up to 87% of those discharged from hospital have experienced 'long COVID'. Design: A qualitative design was used to understand patient experience of hospitalisation following a diagnosis of COVID‐19, and their experiences following discharge from hospital. Methods: Ten patients with a previous diagnosis of COVID‐19 took part in semi‐structured interviews regarding their experiences of hospitalisation and the impact on quality of life post‐discharge. Results: The results identified three key themes from the interviews: communication and the inpatient experience, symptoms following discharge and regaining independence. Patients discussed their experience of hospitalisation and how this continued to impact their emotional well‐being post‐discharge. However, patients appeared to push themselves physically to improve their health, despite continued COVID‐19 symptoms. Conclusion: Patients hospitalised following a diagnosis of COVID‐19 experienced psychological distress during their hospital stay, as well as 3‐months post‐discharge. We suggest the use of psychosocial interventions to support patients post‐discharge. Relevance to Clinical Practice: The results of this study provide a greater understanding of the patient experience during their hospital stay, which can support nursing staff practice. Additionally, the study provides in depth knowledge of personal experiences of patients diagnosed with COVID‐19 and the impact following hospital discharge. Patient or Public Contribution: Patient's took part in semi‐structured interviews via telephone to support the aims and objectives of this study. [ABSTRACT FROM AUTHOR]

• Patients with HypoPP can have impaired quality of life. • Patients with HypoPP can suffer from fatigue and pain. • Attention should be given to muscle weakness and fatigue in patients with HypoPP. Primary hypokalemic periodic paralysis (HypoPP) is a skeletal muscle channelopathy most commonly caused by pathogenic variants in the calcium channel gene, CACNA1S. HypoPP can present with attacks of paralysis and/or permanent muscle weakness. Previous studies have shown that patients with HypoPP can have impaired quality of life (QoL). In this cross-sectional study, we aimed to describe the QoL in patients with HypoPP caused by pathogenic variants in CACNA1S using The Individualized Neuromuscular Quality of Life (INQoL) questionnaire, a validated tool to measure the QoL of patients with neuromuscular diseases (higher score, worse QoL). We showed that muscle weakness and fatigue were the symptoms with the greatest impact on participants' lives and that "activities", in the life domain of the INQoL, was most affected by HypoPP. Furthermore, we showed that the total INQoL score increased with age. Low QoL was primarily driven by progressive permanent muscle weakness and not attacks of paralysis, although half of the participants reported that attacks of paralysis challenged their daily life. The results suggest that special attention should be given to muscle weakness and fatigue in patients with HypoPP. [ABSTRACT FROM AUTHOR]

Aim: Conflicting findings have been reported on whether in youths, the double diagnosis of type 1 diabetes (T1D) and celiac disease (CD) substantially impacts quality of life QoL, compared to subjects with T1D only. Methods: In this study, 86 youths with double diagnosis and their parents were compared to 167 subjects with T1D only. QoL was assessed through the KINDL questionnaire. Anti-tissue transglutaminase antibodies and dietary interviews evaluated the degree of maintaining a gluten-free diet (GFD). Results: We found that having CD in addition to T1D has little effect on overall QoL. However, analysis of the degree of maintaining GFD revealed significantly lower total QoL scores in groups with T1D + CD not strictly maintaining GFD compared to T1D only (p = 0.0014). The multivariable linear regression model confirmed the importance of maintaining GFD on QoL in subjects (p = 0.0066) and parents (p = 0.023). Conclusion: The coexistence of T1D and CD and the adoption of a GFD resulted in poor QoL levels, as in youth as in their parents, when difficulties implementing the GFD are present. Psychological support should consider the importance of maintaining GFD not only to prevent potential complications in the future but also to improve actual QoL in different subdomains. [ABSTRACT FROM AUTHOR]

Organ preservation is a goal of head and neck squamous cell cancer (HNSCC) treatment. chemoradiotherapy remains one of the main treatment options and is widely recognized as a method with organ-preserving potential and outcomes comparable to those of surgery. However, few studies have investigated the quality of life (QOL) of patients with HNSCC treated using chemoradiotherapy, therefore, we aimed to retrospectively evaluate how QOL changes pre and post-chemoradiotherapy. We evaluated QOL outcomes in patients who underwent initial radical chemoradiotherapy for HNSCC at the Department of Otolaryngology and Head and Neck Surgery Kitasato University Hospital from 2018 to 2021. We used the Cancer Fatigue Scale (CFS) and the combined European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-H&N35 questionnaires at pre-treatment, three months and six months post-treatment. We obtained 37 and 29 responses from the CFS and EORTC QLQ-C30/H&N35 questionnaire, respectively. From the CFS, the physical fatigue score at three months post-treatment deteriorated more than that at pre-treatment, and significantly improved by six months post-treatment. The total score worsened significantly at three months and there was a trend toward improvement at six months. In the EORTC QLQ-C30, physical and social functioning declined in three months and did not improve within six months. Fatigue was substantially worse at three months and significantly improved at six months but did not reach the same level as that before treatment. Appetite loss was also significantly worse at three months. In the QLQ-H&N35 questionnaire, sensory issues, trouble with social contact, and dry mouth were significantly worse at three months and did not improve within six months. Sticky saliva also worsened at three months and significantly improved at six months. There were some problems associated with chemoradiotherapy. Some patients showed an improvement, while others continued to have challenges. In Japan, chemoradiotherapy was shown to have a long-term impact on the patient's life. [ABSTRACT FROM AUTHOR]

Objective: High self‐efficacy is associated with improved self‐care and reduced symptoms in cancer patients but has not been fully interrogated in adults with central nervous system (CNS) cancers. We aimed to identify the relationship between self‐efficacy levels in managing emotions (SEMEM) and social interactions (SEMSI) by examining sample characteristics and symptom burden. Methods: Sample characteristics and patient‐reported outcome (PRO) measures addressing self‐efficacy (PROMIS SEMEM & SEMSI) and symptom burden (MDASI BT or SP) were collected in a novel web‐based study of 158 adult patients diagnosed with rare CNS tumors. Results: The sample was predominantly female (73%), diagnosed with an ependymoma (66%), and had a median age of 45 (19–75). Low SEMEM was associated with a longer duration of symptoms before surgery (r = −0.26) and female gender (92%) among brain tumor (BT) participants and in spinal cord tumors (SCT), those with lower education (r = 0.29). Reporting low SEMSI was associated with being married (42%), lower education (r = 0.22), and a prolonged time with symptoms before surgery (r = 0.29) in those with BTs, with no associations identified in SCT. More severe mood‐related interference (including mood, enjoyment of life, and relationship with others) was associated with lower SEMEM among both locations (r = −0.61 brain, r = −0.28 spine) and SEMSI in BT participants (r = −0.54). Conclusions: Low self‐efficacy was linked to a prolonged time between symptom onset and initial surgery, education, gender, and marital status and was associated with higher mood‐related interference. Understanding characteristics associated with low self‐efficacy underscores a need for future studies to tailor interventions that enhance self‐efficacy. [ABSTRACT FROM AUTHOR]

Background: Attaining a good quality of life (QOL) is a priority for people living with HIV (PLHIV). We explored the interaction between QOL and the associated demographic, behavioural and clinical factors for PLHIV attending an outer-metropolitan clinical setting in Western Sydney, Australia. The clinic's cohort of PLHIV is characterised by relatively high proportions of women, heterosexual men, and patients from culturally and linguistically diverse (CALD) communities. Methods: We assessed QOL using the PozQol tool that is specifically designed for PLHIV. QOL scores and de-identified socio-demographic and clinical data were extracted from the electronic and paper medical records of PLHIV who completed a PozQol tool (September 2020–March 2022). We performed descriptive analyses and logistic regression to identify associations. Results: Among 188 patients, there were 77.7% men, 21.3% women, 1.1% transwomen; 67.0% were born overseas, 85.1% spoke English, 84.4% were Medicare-eligible, 85.9% were employed, 58.5% were diagnosed with HIV 6–20 years ago, and 33.0% within the past 5 years. Overall, 58.0% had a high or very high QOL. A low score in any domain was associated with Medicare-ineligibility. Low QOL scores in specific domains were associated with the following factors: health (being born overseas, having partners of both sexes), psychological (unemployment, having a mental health condition, having a viral load >20 copies/mL), social (unemployment), and functional (Medicare-eligibility, unemployment, having a viral load >20 copies/mL). Conclusions: The PozQol tool has enhanced understanding of factors impacting on QOL for PLHIV attending our service in Western Sydney. Identifying patients with low QOL scores allows targeted clinical interventions to improve QOL, and re-alignment of clinical services to better support PLHIV. Quality of life (QOL) is an important priority for people living with HIV (PLHIV). Using a patient-reported outcome measure (PozQol tool), we found that 58% of PLHIV reported a high or very high QOL, and socio-demographic factors such as Medicare-ineligibility and unemployment were associated with lower QOL scores. PozQol may assist services by enhancing understanding of QOL among PLHIV, guide local and national policy, health service provision, and promote empowerment of individuals to better understand their own QOL. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study is to conduct a systematic review to assess the effects of different forms of resistance exercises (resistance exercise, resistance exercise combined with aerobic exercise, and resistance exercise combined with other exercises) on physical fitness, quality of life (QOL), and fatigue of patients with cancer. Methods: We conducted a systematic review using the Cochrane Handbook for Systematic Reviews of Interventions guidelines. We searched PubMed, Web of Science, and Scopus databases for the studies from the establishment of the database to September 2023, including randomized controlled trials and clinical trials that evaluated the effects of different resistance exercise on physical fitness, QOL, and fatigue in all patients with cancer. Two reviewers independently assessed the quality of all the included studies using the Cochrane Handbook for Systematic Reviews of Interventions and MINORS scale. We divided the intervention into three types: resistance exercise, resistance exercise combined with aerobic exercise, and resistance exercise combined with other exercises. Results: In total, 48 studies (3,843 participants) met the inclusion criteria. The three exercise intervention forms have significant effects on physical fitness and QOL, but the improvement effect on fatigue is not clear. A total of 34 studies reported significant and beneficial effects of resistance exercise on physical fitness across all types of cancer. There were 28 studies that reported significant or borderline improvement effects of resistance on QOL, and only 10 studies reported significant effects of resistance exercise interventions on fatigue improvement in patients with cancer. Conclusions: Resistance exercise, resistance exercise combined with aerobic exercise, and resistance exercise combined with other exercises all have a positive effect on improving fitness and QOL in patients with cancer. Resistance exercise has an advantage in improving muscle strength, while combined resistance exercise has an advantage in improving QOL; however, there are no consistent findings in improving fatigue, although low-intensity resistance exercise is effective. [ABSTRACT FROM AUTHOR]

Among studies conceptualizing quality of life (QoL) as the subjective measure of one's well-being, evidence suggests a link between cognitive impairment and diminished quality of life. However, the direction of the association is not clear, and most studies have employed a global measure of cognition, which can mask subtle domain-specific declines. In this study, we aim at examining the longitudinal associations between memory and QoL in a representative sample of adults and older adults in Europe and Israel, employing data from the Survey of Health, Ageing and Retirement in Europe (SHARE). The sample was composed by 56,616 respondents aged 50 or older at the beginning of the study period. A Parallel-Process Latent Growth Model (PP LGM) of memory and QoL conditioned on the effects of age, gender, educational level, physical inactivity, depressive symptomatology and social activity participation, was tested. Results displayed a trajectory of decline for both memory and QoL, with higher initial levels of memory associated with higher initial levels of QoL, and steeper decline in memory associated with steeper decline in QoL. Moreover, a positive effect of initial memory onto QoL trend over time was found, indicating that better memory is associated to better QoL in the future, but the opposite did not occur. Results also provide evidence of gender differences. All in all, this work found evidence supporting the longitudinal effect of memory on QoL, which may have consequences for intervention implementation, given that actions for alleviating age-related memory impairment could also have a positive impact onto older adults' QoL. [ABSTRACT FROM AUTHOR]

This study aims to assess the self-perception of the QoL (WHOQOL-bref) in the Canal of Anil zone and its neighbor zone of the center of the District of Anil in Rio de Janeiro and to identify which factors are associated with the population self-perception of the need to "improve" their quality of life (QoL). A cross-sectional observational analytical study was carried out after approval by the competent ethics committee (CEP/CONEP) approval. A non-probabilistic sampling of residents of the Canal of Anil (n = 494) and the central district of Anil (n = 250) was used. A questionnaire was administered in person to collect data on self-reported sociodemographic characteristics, general health, sanitation, lifestyle in the residential area, and the WHOQOL-Bref. Although with a worse self-perceived water/sanitation participants in the Anil Canal community report fewer allergies, less medication, fewer skin diseases, less Zika virus, and less Chikungunya, among others. The self-perception of the need to improve the QoL in the Anil Canal community and the zone at the central District of Anil has proved to be influenced by several social and economic factors as well as residential practices and conditions. The multivariate analysis allowed us to identify both modifiable and non-modifiable risk factors for the need to improve physical QoL: taking medication, respiratory problems, skin disease diagnosed by a doctor, having a water tank at home or having filtered water at home, unpleasant odor of the water of the Anil Canal and the level of education, and age. Regarding the need to improve the environmental QoL, both areas are largely modifiable (e.g., having had ascariasis/roundworm; having a water tank in the house; not drinking bottled water; not having pavements in the street). Sociodemographic and environmental factors, in addition to health conditions, play a pivotal role in influencing individuals' perceptions of the necessity for enhanced physical and environmental well-being. [ABSTRACT FROM AUTHOR]

Background: Neurofibromatosis type 1 (NF1) is a genetic disorder that affects multiple systems in the body, often leading to physical disfigurements and a wide range of clinical symptoms. This study aims to investigate the relationship between NF1 severity and visibility and the quality of life (QoL) in children. Methods: The Pediatric Quality of Life Inventory (PedsQL) and a modified version of the Ablon scale were used to assess QoL and NF1 severity and visibility, respectively. Self-reported and parent-reported QoL scores were compared, and the associations between NF1 severity/visibility and QoL were explored. Results: Thirty-eight pediatric NF1 patients and their parents were enrolled. QoL scores did not differ significantly between patient self-reports and parent reports. However, correlational analyses revealed that higher NF1 severity was associated with lower physical QoL in patients, and greater NF1 visibility was linked to lower physical and social QoL. For parents, higher NF1 severity correlated with lower school functioning, whereas NF1 visibility did not show a significant correlation with QoL. Conclusion: The severity and visibility of NF1 have distinct impacts on various aspects of QoL in children, highlighting the need for tailored interventions that address both physical and psychological challenges. These findings underscore the importance of comprehensive care approaches in managing NF1 in pediatric populations. [ABSTRACT FROM AUTHOR]

Background: The quality of life (QoL) of nursing home residents is multifaceted and influenced by relationships, health, and activities, as per research in international literature. However, studies exploring QoL predictors considering varying cognitive impairment levels are limited in the French context. This study examined the impact of sociodemographic factors and cognitive impairment on the QoL in Alzheimer's Disease Nursing Homes (QoL-AD NH) scale scores among French nursing home residents. It further identified predictors through responses to qualitative semi-structured interviews. These elements were integrated and compared to understand more comprehensively the multifaceted determinants influencing residents' QoL. Methods: This mixed methods study used a cross-sectional convergent design, and quantitative and qualitative studies were carried out simultaneously. Using a generalised linear model and Kruskal–Wallis tests, the quantitative strand (N = 151) measured QoL with the QoL-AD NH scale and examined sociodemographic predictors of QoL. The qualitative strand (N = 78) involved semi-structured interviews with residents across four levels of cognitive functioning (no, mild, moderate, and severe impairment) and explored their QoL determinants through thematic analysis. Both strands were then integrated and analysed. Results: Mild cognitive impairment and depression negatively predicted QoL-AD NH scores. For specific items, residents with mild cognitive impairment had lower "Ability to keep busy daily" and "Current life in general" scores than residents without cognitive impairment. Qualitatively, family relationships were indispensable for QoL across groups, but those with mild cognitive impairment complained about a lack of activities in nursing homes. The analysis identified convergent predictors and enriched our understanding of daily occupation. Theory comparisons revealed assessment limitations in psychological well-being. Conclusions: A mixed approach provided a nuanced understanding of QoL, highlighting vulnerable groups and areas for improving assessment. Combining the results from standardised instruments with semi-structured interviews allowed us to capture a fuller range of experiences. The findings suggest a need to reconsider QoL assessment tools for nursing home residents and policies to address their needs regardless of their cognitive levels. They highlight the value of mixed methods for researching this multifaceted field. [ABSTRACT FROM AUTHOR]

Introduction: Dual eligible beneficiaries are a vulnerable population who often experience inferior access to care and outcomes compared to non‐dual eligible beneficiaries. The Oncology Care Model (OCM) is an alternative payment model that aims to improve coordination and quality of care in beneficiaries receiving chemotherapy and thus may improve care for dual eligible beneficiaries with cancer. Methods: We used 100% Medicare claims data from 2014 through 2019 and included beneficiaries with bladder, breast, esophageal, colorectal, kidney, lung, pancreatic, or prostate cancer receiving chemotherapy. We constructed multivariable difference‐in‐differences regression models to evaluate the effect of OCM participation on healthcare utilization and quality of care at the end‐of‐life among dual eligible beneficiaries. We also compared healthcare utilization and quality of care outcomes to non‐dual eligible beneficiaries. Results: We identified 3,043,944 episodes of care among 1,260,892 unique Medicare beneficiaries. Ten percent of all beneficiaries (n = 126,758) were dual eligible and 64,087 (22%) of episodes among dual eligible patients were in an OCM participating practice. We noted no effect of OCM participation on healthcare utilization or end‐of‐life quality of care for dual eligible beneficiaries. However, we observed higher rates of hospitalization, emergency department visits, intensive care unit stays, and a lower number of office visits among dual eligible beneficiaries compared to non‐dual eligible beneficiaries. Conclusions: Participation in OCM was not associated with improvements in quality of care or healthcare utilization for dual eligible beneficiaries. Dual eligible beneficiaries experience lower quality of care across several measures compared to non‐dual eligible beneficiaries. Focused policies and incentives may be necessary to address disparities within emerging health reforms. [ABSTRACT FROM AUTHOR]

Background: Transcatheter aortic valve implantation (TAVI) has become an appealing option in managing patients with severe aortic stenosis (AS) after demonstrating better survival rates, reduction in symptom burden, and improvement in the quality of life (QOL). However, some patients fail to demonstrate benefits after TAVI, whether in terms of survival or QOL. Objective: This study opted to investigate the predictors of poor clinical outcomes following TAVI from a real-world national registry Patients and Methods: This prospective observational study was derived from an Egyptian single-center registry through the duration from November 2022 to May 2023. It included 122 patients who were treated with TAVI. The participants' QOL was evaluated using the EuroQol 5-Dimension 5-Level (EQ-5D-5L) questionnaire at baseline and 6 months follow-up after TAVI. Participants were subdivided into two groups: Group A (good improvement) reported survival and >20% improvement from baseline and group B (poor improvement) reported mortality or ≤ 20% improvement. Results: The mean age of our patients was 73.67 ± 7.04 years, 47.5% were males. A total of 106 patients (86.9%) showed good outcomes in the form of survival and QOL improvement >20%. Three patients (2.5%) experienced periprocedural mortality and 13 patients (10.6%) did not show an improvement in QOL of >20%. The independent predictors correlated to poor outcomes were: DM (P=0.028), creatinine clearance ≤ 46 ml/min (P=0.002), and preexisting intraventricular conduction delay (IVCD) (P=0.017) and post-procedural CrCl ≤ 49ml/min (P= 0.011). Conclusions: Our study concluded that certain preoperative risk factors and postoperative complications can predict patients' outcomes after TAVI. The independent predictors of poor outcomes were pre-procedural factors (pre-existing DM, chronic kidney disease (CKD) with CrCl ≤ 46 ml/min, and pre-existing IVCD) and a post-procedural factor which was CrCl ≤ 49 ml/min. [ABSTRACT FROM AUTHOR]

Background: People who had a mastectomy may feel pain that comes from the breast that was cut off. These are called phantom breast sensations (PB sensations) and phantom breast pain. Some of the problems that breast cancer patients have after treatment are a limited range of motion in the shoulder, arm swelling, loss of shoulder strength and PB feeling. Purpose: To investigate efficacy of low-level laser therapy on shoulder mobility and phantom breast pain postmastectomy. Patients and methods: 44 patients with postmastectomy phantom pain, their ages ranged from 20 to 50 years. They were randomly divided into two groups; Group (A) (study group): received low level laser therapy combined with routine physical therapy exercises, 3 sessions per week for 4 weeks, Group (B) (control group): received only routine physical therapy exercises, 3 sessions per week for 4 weeks. Visual analogue scale (VAS) was used to measure shoulder pain, goniometer was used to measure shoulder range of motion. Quality of life questionnaire was used to assess functional state and symptoms. Results: There was a significant decrease in VAS post treatment compared with that of pretreatment in study group when compared with control group. Statistical analysis showed significant improvement in shoulder flexion, abduction and external rotation post treatment compared with that of pretreatment in both groups. Statistical analysis showed significant improvement in quality-of-life questionnaire post treatment compared with that of pretreatment in both groups. Conclusion: Low level laser therapy can improve shoulder ROM, quality of life scale and decrease phantom pain postmastectomy. [ABSTRACT FROM AUTHOR]

Introduction: Cancer has a significant impact on the patient not only physically, but also psycho-emotionally, socially and spiritually. Complications of the disease and treatment can lead to sleep disturbances, increased level of anxiety and various forms of depression and, consequently, to the decrease of the quality of life, one of the most important factors pursued in the palliative setting. Spirituality is an important segment of the suffering individual, its impact having a key role in the screening of psycho-emotional disorders in cancer patients. This dimension is the least studied due to the lack of clear definitions and the difficult quantification of the information received. Material and Method: We conducted a literature review that aimed to identify the aspects related to spiritual well-being and quality of life in adults diagnosed with cancer and, also, the correlation of the two aspects. We used the PubMed database to identify the needed articles and we used the following keywords: cancer patients, quality of life, QoL, spiritual well-being, SWB. We selected the articles published between January 2015 and December 2023 and, out of 786 that we identified, we included 10 after analysis (literature reviews, observational studies, qualitative studies). Although the analyzed populations had diverse characteristics, varying from the stage of the disease to the religious confession, the obtained results support the relationship between the two aspects discussed. Conclusion: Integrating the issue of spirituality and understanding spiritual needs are essential interventions in the approach to the cancer patient. Spiritual suffering is based on a wide panel of causes such as loneliness, fear, hopelessness or social isolation, and their relief can lead to a better quality of life for patients. [ABSTRACT FROM AUTHOR]

BACKGROUND: Radiculopathy can cause pain and numbness along a pinched nerve. OBJECTIVE: To investigate how people with cervical radiculopathy respond to intense cervical traction in terms of depression, sleeplessness, and quality of life (QoL). METHODS: Two equal groups of forty male patients with unilateral cervical radiculopathy were randomly assigned. In addition to transcutaneous electrical nerve stimulation (TENS) and other treatments, twenty individuals in group I received mechanical cervical traction. Group II consisted of twenty individuals who received only TENS treatment. Before and after treatment, every participant completed the Arabic versions of the Hospital Anxiety and Depression Scale (HADS), the Insomnia Severity Index (ISI), and Short-Form 36 Health Survey (SF-36). RESULTS: While there was no significant difference in group II, there was a significant decline in group I visual analog scale (P = 0.001), depression subscale of the hospital anxiety and depression score (P = 0.001), and ISI (P = 0.001). Eight domains of SF-36 showed a significant increase in group I. These domains included physical functioning (P = 0.001), role limitations due to physical health (P = 0.001), role limitations due to emotional problems (P = 0.001), and energy (P = 0.001). In group II, there was a non-significant increase nevertheless. CONCLUSION: Cervical traction improved individuals' QoL, depression, and insomnia, suggesting the effectiveness of it with TENS for cervical radiculopathy patients. [ABSTRACT FROM AUTHOR]

Background: Regular and consistent disease assessment could provide a clearer picture of burden in generalised myasthenia gravis (gMG) and improve patient care; however, the use of assessment tools in practice lacks standardisation. This modified Delphi approach was taken to review current evidence on assessment tool use in gMG and develop expert‐derived consensus recommendations for good practice. Methods: A European expert panel of 15 experienced gMG neurologists contributed to development of this consensus, four of whom formed a lead Sub‐committee. The PICO (Population, Intervention, Control, Outcomes) framework was used to define six clinical questions on gMG assessment tools, a systematic literature review was conducted, and evidence‐based statements were developed. According to a modified Delphi voting process, consensus was reached when ≥70% of the experts rated agreement with a statement as ≥8 on a scale of 1–10. Results: Eighteen expert‐ and evidence‐based consensus statements based on six themes were developed. Key recommendations include: consistent use of the Myasthenia Gravis Activities of Daily Living score (MG‐ADL) across clinical settings, followed by a simple question (e.g., Patient Acceptable Symptom State [PASS]) or scale to determine patient satisfaction in clinical practice; use of a Quantitative Myasthenia Gravis [QMG] or quality of life [QoL] assessment when the MG‐ADL indicates disease worsening; and consideration of symptom state to determine the timing and frequency of recommended assessments. Expert panel consensus was reached on all 18 statements after two voting rounds. Conclusions: This process provided evidence‐ and expert consensus‐based recommendations for the use of objective and subjective assessment tools across gMG research and care to improve management and outcomes for patients. [ABSTRACT FROM AUTHOR]

Background: Even though the survival of people living with HIV/AIDS (PLWHA) has improved by ART, their lifestyles and quality of life are affected by several factors like family and community support, and their socio-economic status. Hence, this study was undertaken to estimate the quality of life of HIV/AIDS patients based on the World Health Organization Quality Of Life-Human Immunodeficiency Virus Brief (WHOQOL-HIV BREF) questionnaire and to assess the association of quality of life with socio-demographic variables. Materials and Methods: A cross-sectional study was conducted from April 2019 to December 2020 in a sample of 220 HIV/AIDS patients of age more than 18 years, taking treatment at ART center, Tertiary Care Hospital in Tirupati. The data were collected using a standardized instrument (WHOQOL-HIV BREF). Socio-demographic details of the subjects were also obtained. Data were analyzed using Epi info software 7.2.2.6 version. Results: The overall mean QOL score is 59.3 ± 10.3. The highest mean QOL observed in the physical domain and the most affected domain is the social relationship's domain. Lower levels of QOL were seen in females, residing in rural areas, illiterates, separated/divorced, who does not reveal their HIV status to their family members, who does not have family support, and these are found to be significantly associated with QOL (P < 0.05). Conclusion: The most affected domain is social relationship's domain. Age, residence, educational status, marital status, knowledge of HIV status to family members, and their family support were found to be significantly associated with QOL among PLWHA. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusion There is a limited number of studies assessing the alterations in nerve function impairment (NFI) in leprosy over an extended period of time. To the best of our knowledge, no published study has evaluated neurological state longitudinally during treatment utilizing a combination of clinical, functional (activity limitation), electrophysiological, and patient‐reported quality of life (QOL) outcomes.This prospective, observational study included leprosy patients of all spectra. Over 1 year of treatment, cutaneous and neurological examinations were done in addition to a nerve conduction study (NCS) and sympathetic skin response (SSR) assessment. QOL and activity limitation assessments using the World Health Organization Quality of Life brief version (WHOQOL–BREF) and Screening of Activity Limitation and Safety Awareness scale (SALSA), respectively, were also performed.Out of 63 leprosy patients, loss of sensation was noted in 43 (68.2%) at baseline. At the completion of treatment, proportionate change revealed no change in 18 (28.5%), restored function in 9 (14.2%), improved status in 34 (53.9%), and deteriorated NFI in only 2 (3.1%) cases. The association between NCS‐SSR abnormalities was significant for a longer duration of disease at presentation (P = 0.04), in multibacillary cases [OR 9.12 (95% CI, 1.22–67.93)], in those in reaction [OR 3.56 (95% CI, 0.62–20.36)] and in those aged over 40 [OR 1.93 (95% CI, 0.28–13.41)]. There was an improvement in WHOQOL‐BREF and SALSA scores at release from treatment (P = 0.005 and P = 0.01, respectively).The majority of leprosy patients on treatment show improvement in NFI at the completion of therapy. However, change is influenced by critical factors such as bacillary load, disease duration, age, and the presence of reaction(s). [ABSTRACT FROM AUTHOR]