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Introducción: La calidad de vida relacionada con la salud (CVRS) y los estados de ánimo son indicadores cruciales del bienestar en adolescentes, pero su relación con estudiantes de Antioquia, Colombia, no ha sido ampliamente estudiada. Objetivo: Determinar la CVRS y los estados de ánimo en escolares de Antioquia-Colombia. Materiales y métodos: Estudio transversal con 1957 escolares de 9 a 20 años. Se aplicaron mediciones de CVRS, ansiedad, depresión, hostilidad y alegría, actividad física, comportamiento sedentario, apoyo social de padres y nivel socioeconómico. Resultados: La calidad de vida alta (CVA) es más elevada en hombres, personas con alegría, estudiantes con apoyo de padres, activos físicamente y personas de nivel socioeconómico alto y medio. AL aumentar un año de edad, disminuye en un 15 % la CVA, y al aumentar la depresión, la ansiedad y el comportamiento sedentario disminuye la CVA. Además, los niveles de depresión y ansiedad son mayores en mujeres, estudiantes mayores, sin apoyo de los padres y personas sedentarias. Conclusiones: La CVRS se asocia con estados de ánimo, actividad física, comportamiento sedentario y apoyo de los padres; mientras que los estados de ánimo se asocian con el sexo, el apoyo de los padres, la CVS y el sedentarismo.
Introduction: Even though health-related quality of life (HRQL) and mood states are key indicators of the well-being of adolescents, their relationship has not been analyzed in students from Antioquia, Colombia. Objective: To determine HRQL and mood states in schoolchildren from Antioquia. Materials and methods: A cross-sectional study was conducted on 1,957 schoolchildren and adolescents aged between 9 and 20 years. Measurements of HRQL, anxiety, depression, hostility and happiness, physical activity, sedentary behavior, parental social support, and socioeconomic status were applied. Results: A high quality of life (HQL) was observed more frequently in male participants, students with parental support, physically active, and those belonging to medium and high socioeconomic status. HQL decreased 15% as their age increased by one year. Also, HQL was reduced when depression, anxiety, and sedentary behavior increased. Furthermore, depression and anxiety levels were higher in women, older students, as well as in those without parental control and with sedentary behavior. Conclusions: HRQL is associated with mood states, physical activity, sedentary behavior, and parental support. In contrast, mood states are related to gender, parental support, HQL, and sedentary lifestyle.
Introdução: A qualidade de vida relacionada à saúde (CVRS) e os estados de humor são indicadores cruciais de bem-estar em adolescentes, mas sua relação com estudantes de Antioquia, Colômbia, não foi amplamente estudada. Objetivo: Determinar a CVRS e os estados de humor em escolares de Antioquia-Colômbia. Materiais e métodos: Estudo transversal com 1.957 escolares de 9 a 20 anos. Foram aplicadas medidas de QVRS, ansiedade, depressão, hostilidade e felicidade, atividade física, comportamento sedentário, apoio social dos pais e nível socioeconômico. Resultados: A alta qualidade de vida (CVA) é maior em homens, pessoas com alegria, estudantes com apoio parental, fisicamente ativos e pessoas de nível socioeconômico alto e médio. À medida que a idade aumenta em um ano, diminui em 15% o CVA, e ao aumentar a depressão, a ansiedade e o comportamento sedentário aumentam, o CVA diminui. Além disso, os níveis de depressão e ansiedade são mais elevados nas mulheres, nos estudantes mais velhos, sem apoio dos pais e nas pessoas sedentárias. Conclusões: A QVRS está associada a estados de humor, atividade física, comportamento sedentário e apoio parental; enquanto os estados de humor estão associados ao sexo, apoio parental, CVS e estilo de vida sedentário.
Subject(s)
Humans , Male , Female , Child , Adolescent , Young Adult , Health , Emotions , Happiness , HostilityABSTRACT
El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)
The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)
Subject(s)
Humans , Young Adult , Adult , Intellectual Disability , Quality of Life , Disabled Persons , Chile , Sampling StudiesABSTRACT
El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)
The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)
Subject(s)
Humans , Young Adult , Adult , Intellectual Disability , Quality of Life , Disabled Persons , Chile , Sampling StudiesABSTRACT
Objective: To find the common practices among speech language pathologists regarding partner-oriented training for aphasic patients. METHODS: The exploratory, qualitative study was conducted at Riphah International University, Lahore, Pakistan, from March 1 to May 31, 2021, and comprised speech language pathologists working with aphasic patients for at least 5 years in Lahore, Karachi and Islamabad. Data was collected using a structured interview guide that were conducted online. The recorded interviews were transcribed, and the data was subjected to thematic analysis. RESULTS: Of the 10 subjects, 6(60%) were females and 4(40%) were males. Overall, 6(60%) subjects had professional experience of >10 years. Thematic analysis showed that most of the speech language pathologists used traditional approaches for aphasia treatment, and counselling of patient's caregiver was done. However, there was no formal tool in Urdu language to provide basic communication strategies for the patient's caregivers or their communication partners. The participants recommended efforts to develop such a tool. Conclusion: There was found a dire need of communication partner training (CPT) programme for aphasia patients and their partners with appropriate linguistic and cultural norms to facilitate them with the aim of improving their quality of life.
Subject(s)
Aphasia , Qualitative Research , Speech-Language Pathology , Humans , Aphasia/rehabilitation , Aphasia/therapy , Female , Male , Speech-Language Pathology/education , Pakistan , Caregivers/education , Communication , Adult , Counseling/methods , Spouses/psychologyABSTRACT
Musculoskeletal (MSK) disorders encompass various conditions impacting bones, muscles, tendons, ligaments, and nerves. An estimated 1.71 billion individuals globally have MSK disorders, causing disability and reduced quality of life. Literature contradicts the notion that musculoskeletal pain and disability solely arise from physical impairments; psychological, behavioural, and social factors contribute significantly. These facets influence pain perception and chronic impairment development. Common interventions-medication, exercise, manual and hydrotherapy, electro-thermal modalities, behavioural and alternative therapies-address pain individually, yet lack the comprehensive response required. In contrast, a multimodal approach combines diverse therapies tailored to individual needs. It ensures lasting symptom relief, prevents recurrence, and improves function. Although proven effective, clinical implementation of this approach remains limited. This mini-review discusses the reasons behind this gap, underscores multimodal approach importance, and enlightens rehabilitation professionals on its potential for managing chronic musculoskeletal issues.
Subject(s)
Musculoskeletal Diseases , Humans , Musculoskeletal Diseases/therapy , Combined Modality Therapy , Musculoskeletal Pain/therapy , Chronic Disease , Exercise Therapy/methodsABSTRACT
Cognitive Stimulation Therapy (CST) is an evidence-based, non-pharmacological intervention for older adults with mild to moderate dementia. While CST has been adapted in various ways, this study explored the impact of adding a spiritual dimension to CST. Participants (N = 34) were divided into spiritual and traditional CST groups based on their residence. After a 14-session intervention involving interactive conversations, the spiritual CST group showed significantly lower depression scores (M = 2.7) compared to traditional CST (M = 6.5). With the global increase in dementia-related disorders, non-pharmacological interventions like CST offer crucial support for addressing memory loss. Social workers are uniquely positioned to deliver CST to diverse populations who value spirituality or faith in their daily lives.
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PURPOSE: To explore the mediating role of trait anxious personality in the association between quality of life (QoL) and death anxiety (DA), as well as to test the moderating effect of social support in the mediation model. METHODS: The Death Anxiety Scale, Quality of Life Scale, State-Trait Anxiety Scale, and Social Support Rating Scale were used to measure 588 family caregivers of advanced cancer patients. We then constructed a moderated mediation model. RESULTS: The presence of QoL was negatively associated with DA (ß = - 0.67, p < 0.01). Trait anxious personality partially mediated the relationship between QoL and DA (indirect effect ß = - 0.08, p < 0.01). Social support moderated both the antecedent and subsequent segments of the mediating paths of "QoL â trait anxious personality â DA" and the direct relationship between QoL and DA. Among caregivers with a low level of social support, the mediating effect coefficient of trait anxious personality was higher at 0.25 (95% confidence interval (CI): 0.059-0.182), in contrast to caregivers with a high level of social support, where the mediating effect coefficient of trait anxious personality was 0.11 (95% CI: 0.029-0.072). CONCLUSION: QoL is directly associated with an increased risk of DA and indirectly related to DA by increasing the risk of trait anxious personality among caregivers. Social support can moderate the mediating effect of trait anxious personality and the relationship between QoL and DA. The intervention strategy for preventing DA among caregivers who have encountered QoL reduction should focus on reducing trait anxious personality and social support.
Subject(s)
Anxiety , Caregivers , Neoplasms , Personality , Quality of Life , Social Support , Humans , Quality of Life/psychology , Caregivers/psychology , Male , Female , Neoplasms/psychology , Middle Aged , Anxiety/psychology , Anxiety/etiology , Adult , Aged , Attitude to Death , Surveys and QuestionnairesABSTRACT
The aim of this study was to cross-culturally adapt and validate of the Brazilian Portuguese version of the Quality of Life in Autism Questionnaire (QoLA) among parents of children ASD. The translated version was administered to 91 parents (Male: 4, Female: 85, other: 2) of individuals diagnosed with ASD. Among these, 22 completed the questionnaire twice, providing data for the assessment of test-retest reliability (ICC). The B-QoLA score ranged from 41 to 122, with a mean (SD) of 74.3 ± 18.5 in Part A and ranged from 22 to 94, with a mean (SD) of 61.6 ± 16.4, in Part B. Cronbach's alpha coefficient was 0.94 for Part A, 0.92 for Part B and 0.94 for total B-QoLA, indicating excellent internal consistency. Test-retest reliability was assessed using the intraclass correlation coefficient, which was 0.96 for the total scale, 0.94 for Part A, and 0.95 for Part B. Part A-X2 (df) = 297, (167), X2/2 = 1.7, CFI = 0.85, TLI = 0.84, GFI = 0.78, AGFI = 0.75, and RMSEA (95%CI) = 0.09 (0.07-0.11); Part B-X2 (df) = 297, (167), X2/2 = 1.7, CFI = 0.85, TLI = 0.84, GFI = 0.78, AGFI = 0.75, and RMSEA (95%CI) = 0.09 (0.07-0.11), thus indicating moderate fit of the model. The Brazilian version of the QoLA shows encouraging psychometric properties on each of the two subscales, showing strong internal consistency and good construct validity.
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PURPOSE: To evaluate the intramucosal retention system in patients' masticatory efficiency and quality of life in this case series. MATERIAL AND METHODS: A total of 3 individuals with maxillectomy were included for rehabilitation with a complete obturator prostheses with an intramucosal retention system (OPI). The complete obturator prostheses was made for 60 days, and electromyography assessments and bite force were applied before, after 30, 60, and 90 days of surgery and prostheses installation. The University of Washington Quality of Life Questionnaire (UW-QoL) and the Obturator Functional Scale (OFS) were also administered at baseline and in the same follow-up periods. The electromyography was evaluated on both sides of the masseter, temporalis, and buccinator muscles while chewing hard and soft food. The maximum bite force was recorded in the central incisors and both sides of the first molar region. RESULTS: Bite force values increased in the first molar region, and muscular electrical activity remained constant. Items related to the taste and swallowing of the UW-QOL impacted. Most OFS questionnaire data responses indicated that patients improved in swallowing liquid foods and appearance. CONCLUSIONS: The rehabilitative capacity improves masticatory efficiency and QoL in adults maxilectomized and rehabilitated with OPI analysis in the study. Further clinical studies should be encouraged to determine the effectiveness of this retentive system.
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Breast cancer is the most commonly diagnosed cancer among women worldwide. Breast cancer patients experience significant distress relating to their diagnosis and treatment. Managing this distress is critical for improving the lifespan and quality of life of breast cancer survivors. This study aimed to assess the level of distress in breast cancer survivors and analyze the variables that significantly affect distress using machine learning techniques. A survey was conducted with 641 adult breast cancer patients using the National Comprehensive Cancer Network Distress Thermometer tool. Participants identified various factors that caused distress. Five machine learning models were used to predict the classification of patients into mild and severe distress groups. The survey results indicated that 57.7% of the participants experienced severe distress. The top-three best-performing models indicated that depression, dealing with a partner, housing, work/school, and fatigue are the primary indicators. Among the emotional problems, depression, fear, worry, loss of interest in regular activities, and nervousness were determined as significant predictive factors. Therefore, machine learning models can be effectively applied to determine various factors influencing distress in breast cancer patients who have completed primary treatment, thereby identifying breast cancer patients who are vulnerable to distress in clinical settings.
Subject(s)
Breast Neoplasms , Cancer Survivors , Machine Learning , Psychological Distress , Humans , Breast Neoplasms/psychology , Female , Cancer Survivors/psychology , Middle Aged , Adult , Quality of Life , Stress, Psychological/psychology , Aged , Depression/psychology , Surveys and QuestionnairesABSTRACT
The importance of reducing sedentary behavior (SB) in the prevention of mortality and chronic and mental diseases is scientifically well grounded, but SB can be accumulated in diverse domains of life, such as leisure-time SB, transport between home/work/school when sitting (transport-related SB), or in occupational settings such as working or studying (occupational SB), and the associations for each domain of SB with well-being measures and quality of life are still underexplored from a positive perspective. Through a cross-sectional investigation, we collected data from 584 participants who completed a questionnaire throughout November 2021 and with Spearman correlation test, analysed the associations between SB in three different domains with psychological well-being, satisfaction with life, and quality of life. Our results indicated that after adjustment for physical activity, sex, body mass index, smoking history, chronic disease status, financial perception, quality/duration of sleep and university group, in younger adults (18 to 24 years old), leisure-time SB was negatively related to psychological well-being (rho = -0.255; p = 0.008), and in adults (25 to 64 years old), occupational SB was negatively related to satisfaction with life (rho = -0.257; p < .001) and the mental component of quality of life (rho = -0.163; p = 0.027). Our findings highlight the idea that not all SB is built the same and that future strategies to reduce SB from people's lives must target specific domains of SB according to the age group when aiming to improve well-being and quality of life.
Subject(s)
Leisure Activities , Quality of Life , Sedentary Behavior , Humans , Cross-Sectional Studies , Quality of Life/psychology , Male , Adult , Female , Middle Aged , Young Adult , Adolescent , Surveys and Questionnaires , Leisure Activities/psychology , Personal Satisfaction , AgedABSTRACT
BACKGROUND: Many factors contribute to quality of life (QoL) in patients with schizophrenia, yet limited research examined these factors in patients in China. This cross-sectional study explores subjective QoL and its associated factors in patients. METHODS: The QoL was assessed using the Schizophrenia Quality of Life Scale (SQLS). Clinical symptoms were evaluated using the Brief Psychiatric Rating Scale (BPRS) and seven factors were extracted. Patient Health Questionnaire-9 (PHQ-9), and Generalized Anxiety Disorder Scale (GAD-7) were used to assess depression and anxiety. Cognitive impairment was assessed using the Ascertain Dementia 8 (AD8). The Treatment Emergent Symptom Scale (TESS) and Rating Scale for Extrapyramidal Side Effects (RSESE) were used to evaluate the side effects of medications. RESULTS: We recruited 270 patients (male:142,52.6%, mean age:41.9 ± 9.4 years). Positive correlations were observed between SQLS and its subdomains with the total score of BPRS, PHQ-9, GAD-7, AD8, TESS, and RSESE (all P < 0.005). Patients who were taking activating second-generation antipsychotics (SGAs) had lower scores on total SQLS, Motivation/ Energy domain of SQLS (SQLS-ME) as well as Symptoms/ Side effects domain of SQLS (SQLS-SS) compared to those taking non-activating SGAs (all P < 0.005). Multiple regression analysis showed that depressive/ anxiety symptoms and cognitive impairment had significant negative effects on QoL (P ≤ 0.001), while activating SGAs had a positive effect (P < 0.005). Blunted affect and unemployment were inversely associated with the motivation/energy domain (P < 0.001). CONCLUSION: Our findings emphasize the important role of depression/anxiety symptoms and cognitive impairment in the QoL of patients with chronic schizophrenia. Activating SGAs and employment may improve the QoL of these individuals. TRIAL REGISTRATION: This protocol was registered at chictr.org.cn (Identifier: ChiCTR2100043537).
Subject(s)
Antipsychotic Agents , Employment , Quality of Life , Schizophrenia , Humans , Male , Quality of Life/psychology , Schizophrenia/drug therapy , Female , Antipsychotic Agents/therapeutic use , Antipsychotic Agents/adverse effects , Cross-Sectional Studies , Adult , Middle Aged , China , Schizophrenic Psychology , Chronic Disease , Cognitive Dysfunction/psychology , Anxiety/psychology , Depression/psychologyABSTRACT
BACKGROUND: The shift work schedule is a common work arrangement that can disrupt typical sleep-wake rhythms and lead to negative health consequences. The present study aims to examine the effect of shift work on health-related quality of life (QoL) and explore potential behaviorial mediators (i.e., sleep, eating, exercise, smoking, drinking). METHODS: A cross-sectional survey was conducted among 4,449 petroleum workers in southwest China. Data on shift work status, health behaviors, and physical and mental health QoL were collected. We tested our model using path analysis and the Monte Carlo approach among 2,129 included participants. RESULTS: After adjusting for covariates, shift work did not exhibit a significant direct association with QoL. However, shift work indirectly related to poorer physical health quality of life via less frequent healthy food consumption; shift work also indirectly related to poorer mental health QoL via both less frequent healthy food consumption and physical exercise. No significant indirect effects were found via sleeping, smoking, or drinking. CONCLUSIONS: Results suggest that shift work presents a challenge for QoL among Chinese petroleum workers due to their lesser engagement in two specific health behaviors: healthy eating and physical exercise. Healthy eating and exercise may present an even more prominent threat to shift workers' QoL than sleep and substance use. Strategies targeting shift work schedule as well as eating and exercise behaviors may help protect against poor QoL and adverse physical and mental health outcomes in this vulnerable group.
Subject(s)
Exercise , Health Behavior , Quality of Life , Shift Work Schedule , Humans , Quality of Life/psychology , Male , Female , Cross-Sectional Studies , Adult , China , Middle Aged , Shift Work Schedule/psychology , Shift Work Schedule/adverse effects , Exercise/psychology , Surveys and Questionnaires , Sleep , Petroleum , Work Schedule Tolerance/psychologyABSTRACT
BACKGROUND/OBJECTIVES: Stroke damage to the primary visual cortex induces large, homonymous visual field defects that impair daily living. Here, we asked if vision-related quality of life (VR-QoL) is impacted by time since stroke. SUBJECTS/METHODS: We conducted a retrospective meta-analysis of 95 occipital stroke patients (female/male = 26/69, 27-78 years old, 0.5-373.5 months poststroke) in whom VR-QoL was estimated using the National Eye Institute Visual Functioning Questionnaire (NEI-VFQ) and its 10-item neuro-ophthalmic supplement (Neuro10). Visual deficit severity was represented by the perimetric mean deviation (PMD) calculated from 24-2 Humphrey visual fields. Data were compared with published cohorts of visually intact controls. The relationship between VR-QoL and time poststroke was assessed across participants, adjusting for deficit severity and age with a multiple linear regression analysis. RESULTS: Occipital stroke patients had significantly lower NEI-VFQ and Neuro10 composite scores than controls. All subscale scores describing specific aspects of visual ability and functioning were impaired except for ocular pain and general health, which did not differ significantly from controls. Surprisingly, visual deficit severity was not correlated with either composite score, both of which increased with time poststroke, even when adjusting for PMD and age. CONCLUSIONS: VR-QoL appears to improve with time postoccipital stroke, irrespective of visual deficit size or patient age at insult. This may reflect the natural development of compensatory strategies and lifestyle adjustments. Thus, future studies examining the impact of rehabilitation on daily living in this patient population should consider the possibility that their VR-QoL may change gradually over time, even without therapeutic intervention.
Subject(s)
Quality of Life , Stroke , Humans , Female , Middle Aged , Male , Stroke/physiopathology , Stroke/complications , Aged , Adult , Retrospective Studies , Vision Disorders/physiopathology , Vision Disorders/etiology , Occipital Lobe/physiopathology , Visual Fields/physiologyABSTRACT
BACKGROUND: Selenoprotein P (SELENOP) transports selenium to extrahepatic tissues and is a biomarker of selenium status. Low soil selenium leads to low dietary selenium intake. A consequence is an increased risk of cardiovascular disease. OBJECTIVE: To investigate clinical aspects associated with SELENOP deficiency, including biomarkers of inflammation, quality of life, and mortality within 12 years, and the effect of dietary selenium and coenzyme Q10 supplementation on SELENOP. METHODS: SELENOP was determined at inclusion and after four years of supplementation in 403 elderly community-living participants low in selenium receiving selenium yeast (200 µg/day) and coenzyme Q10 (200 mg/day), or placebo. Pre-intervention, the average serum selenium level was 67 µg/L. T-tests, repeated measures of variance, Cox proportional regressions analyses, Kaplan-Meier graphs and ANCOVA analyses were applied. Associations with biomarkers of inflammation, telomere length, quality of life and mortality were investigated. Benchmark modelling was used to determine the serum selenium concentration at which the saturation levels of SELENOP and GPx3 was achieved. Comparison with GPx3 and serum selenium to identify increased mortality risk was performed, and the effect of supplementation on SELENOP levels were evaluated. RESULTS: Inverse associations were observed between the level of SELENOP at inclusion and biomarkers for inflammation. At follow-up, shorter telomere lengths were seen in those with low levels of SELENOP at inclusion, whereas high levels of SELENOP were associated with better quality of life and decreased mortality. SELENOP had increased prognostic power compared to GPx3 and selenium. Saturation of SELENOP was achieved at a serum selenium level of 146 µg/L, and for GPx3 at 99 µg/L. Supplementation induced higher levels of SELENOP. CONCLUSION: Significant associations between SELENOP and inflammation, length of telomeres, quality of life, and mortality were observed. Thus, selenium supplementation improved SELENOP expression, thereby facilitating systemic selenium bioavailability and resulting in the observed positive health effects.
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Introduction: Leber hereditary optic neuropathy (LHON) is the most frequent mitochondrial disease causing dyschromatopsia and progressive central visual loss that is subacute in progression and painless. Several studies have been published assessing QoL in patients with LHON, but no estimate of the economic burden has been reported to date. This study aims to quantify direct non-medical and indirect costs (productivity loss) incurred by LHON patients and their informal caregivers in Czechia and Slovakia, as well as to assess their quality of life. Methods: The study was performed in 27 adults and children with LHON. To determine the socioeconomic burden of LHON, separate questionnaires for adults, children, and their parents were developed, including demographic and socioeconomic data. The following data were collected: age, education, family size, severity of LHON, non-medical direct and indirect costs of LHON. Results: The mean age of adult respondents was 36.1 years (SD 13.1; n = 21). The total cost of absenteeism was EUR 1003 per person/year in adult employees, and EUR 2711 per person/year in children's parents. The productivity loss as a consequence of LHON due to combined relative absenteeism and relative presenteeism was estimated at EUR 9840 per an adult patient/year, and EUR 6298 per a parent/year, respectively. The mean cost of informal care was estimated at EUR 4502 (SD 4772; n = 6) per person/year. The mean VFQ-25 score for adult patients with LHON was 43.47 (SD 15.86). Conclusion: The results of this study clearly show that patients with LHON and their families face an extensive socioeconomic burden related to this rare disease. Early, timely and appropriate access to diagnosis, treatment, and reimbursement decisions, but also to psychological counselling and services may help the patients and their relatives adapt and cope with the challenging aspects of vision loss and life with the disease.
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INTRODUCTION: Amblyopia is a neurodevelopmental vision disorder typically affecting one eye, resulting in compromised binocular function. While evidence-based treatments exist for children, there are no widely accepted treatments for adults. This trial aims to assess the efficacy of appropriate optical treatment in improving vision and visual functions in adults with amblyopia. This is hypothesised to significantly improve visual acuity of the amblyopic eye and other visual functions. METHODS AND ANALYSIS: SPEctacle Correction for the TReatment of Amblyopia is a prospective non-randomised interventional trial. The following criteria for amblyopia will be used: best corrected visual acuity (BCVA) in the amblyopic eye of 0.3 to 1.0 (inclusive) logMAR VA and in the fellow eye, 0.1 logMAR or better, with an interocular VA difference of ≥2 logMAR lines. Eligible participants aged 18-39 will receive full/near-full optical treatment requiring wear for at least half their waking hours for the trial duration. A difference of ≥1.00D spherical equivalent between a participant's current refractive correction and the study prescription is required for eligibility. Primary outcome is the change in amblyopic eye BCVA from baseline to 24-week postenrolment. Secondary outcomes include distance and near VA of both eyes, stereoacuity, contrast sensitivity, interocular suppression, angle of strabismus and fixation stability measured at monthly intervals. Visual evoked potentials will also be measured at baseline, week 12 and week 24. Treatment compliance and quality of life for all participants will be monitored.Analyses comparing baseline and week 24 will utilise pairwise comparisons. Linear mixed models will be fitted to the data for measures taken monthly. This allows estimates and inferences to be drawn from the coefficients of the model, while handling missing data. ETHICS AND DISSEMINATION: Human ethics approval was obtained from the respective ethics board of the Hong Kong Polytechnic University (HSEARS20210915002) and the University of Waterloo (#44235). The study protocol will conform to the principles of the Declaration of Helsinki. Results will be disseminated through peer-reviewed journals and conferences. TRIAL REGISTRATION NUMBER: NCT05394987; clinicaltrials.org.
Subject(s)
Amblyopia , Eyeglasses , Visual Acuity , Humans , Amblyopia/therapy , Amblyopia/physiopathology , Prospective Studies , Adult , Young Adult , Adolescent , Male , Female , Treatment Outcome , Non-Randomized Controlled Trials as Topic , Vision, Binocular/physiologyABSTRACT
PURPOSE: Compared with older women diagnosed with breast cancer, younger women are more likely to die of breast cancer and more likely to suffer psychosocially in both the short-term and long term. The Young Women's Breast Cancer Study (YWS) is a multisite prospective cohort study established to address gaps in our knowledge about this vulnerable and understudied population. PARTICIPANTS: The YWS enrolled 1302 women newly diagnosed with stages 0-IV breast cancer at age 40 years or younger at 13 academic and community sites in North America between 2006 and 2016. Longitudinal patient-reported outcome data are complemented by clinical data abstraction and biospecimen collection at multiple timepoints. FINDINGS TO DATE: Key findings related to fertility include that nearly 40% of participants were interested in pregnancy following diagnosis; of those who reported interest, 10% pursued fertility preservation. Overall, approximately 10% of YWS participants became pregnant in the first 5 years after diagnosis; follow-up is ongoing for pregnancies after 5 years. Studies focused on psychosocial outcomes have characterised quality of life, post-traumatic stress and fear of recurrence, with findings detailing the factors associated with the substantial psychosocial burden many young women face during and following active treatment. Multiple studies have leveraged YWS biospecimens, including whole-exome sequencing of tumour analyses that revealed that select somatic alterations occur at different frequencies in young (age≤35) versus older women with luminal A breast cancer, and a study that explored clonal hematopoiesis of indeterminate potential found it to be rare in young survivors. FUTURE PLANS: With a median follow-up of approximately 10 years, the cohort is just maturing for many relevant long-term outcomes and provides outstanding opportunities to further study and build collaborations to address gaps in our knowledge, with the ultimate objective to improve care and outcomes for young women with breast cancer. TRIAL REGISTRATION NUMBER: NCT01468246.
Subject(s)
Breast Neoplasms , Quality of Life , Humans , Female , Breast Neoplasms/psychology , Breast Neoplasms/diagnosis , Prospective Studies , Adult , Young Adult , Pregnancy , Fertility Preservation/psychology , North America , Patient Reported Outcome Measures , Stress Disorders, Post-Traumatic/epidemiology , Stress Disorders, Post-Traumatic/psychologyABSTRACT
Background: Prior studies reveal a lack of illness understanding and prognostic awareness among patients with hematological malignancies. We evaluated prognostic awareness and illness understanding among patients with acute leukemia and multiple myeloma (MM) and measured patient-hematologist discordance. Methods: We prospectively enrolled patients with acute leukemia and MM at Mount Sinai Hospital or Yale New Haven Hospital between August 2015 and February 2020. Patients were administered a survey assessing prognostic awareness, goals of care (GOC), and quality of life. Hematologists completed a similar survey for each patient. We assessed discordance across the cohort of patients and hematologists using the likelihood-ratio chi-square test and within patient-hematologist pairs using the kappa (κ) statistic. Results: We enrolled 185 patients (137 with leukemia and 48 with MM) and 29 hematologists. Among patients, 137 (74%) self-identified as White, 27 (15%) as Black, and 21 (11%) as Hispanic. Across the entire cohort, patients were significantly more optimistic about treatment goals compared with hematologists (p = 0.027). Within patient-hematologist pairs, hematologists were significantly more optimistic than patients with respect to line of treatment (κ = 0.03). For both leukemia and MM cohorts, patients were significantly more likely to respond "don't know" or deferring to a faith-based response with 88 (64%) and 34 (71%), respectively, compared with only 28 (20%) and 11 (23%) of hematologists, respectively. Conclusions: We observed significant discordance regarding prognosis and GOC among patients with hematological malignancies and their hematologists. These data support future interventions to improve prognostic understanding among this patient population to facilitate informed treatment choices.
ABSTRACT
Membranous nephropathy (MN) is a rare complication that can occur after allogeneic hematopoietic stem cell transplantation (allo-HSCT). MN patients may develop nephrotic syndrome or even kidney failure, which greatly affects their quality of life and prognosis. However, current knowledge regarding MN after allo-HSCT is limited. Thus, a multicenter nested caseâcontrol study was conducted. Patients who had been diagnosed with MN after allo-HSCT were retrospectively identified at 8 HSCT centers. A total of 51 patients with MN after allo-HSCT were included. The median age of MN patients after allo-HSCT was 38 years, and the median duration from HSCT to MN was 18 months. The use of HLA-matched donors (P = 0.0102) and peripheral blood as the graft source (P = 0.0060) were identified as independent predisposing risk factors for the onset of MN after allo-HSCT. Compared to those in the control group, the incidence of extensive chronic graft-versus-host disease was greater in the MN patients (P = 0.0002). A total of 31 patients developed nephrotic syndrome. Patients receiving combination treatments of corticosteroids and immunosuppressants appeared to have better outcomes. In conclusion, MN is a rare but occasionally severe complication following HSCT and may require active treatment.
