Found Items

Economic burden of Down syndrome patients and psychological and social discrimination to female caregivers in Changsha, China

OBJECTIVE: To estimate the social and economic burden of Downs syndrome for patients and their families residing in Changsha, China. METHODS: An 160-item self-administered questionnaire was designed and distributed to the primary caregivers of the patients in March 2020. A total of 81 eligible participants had completed the questionnaire, among which 20 were excluded for incomplete data. A patient perspective was taken to estimate the economic

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Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia

Non-motor symptoms (NMS) occur in patients with cervical dystonia (CD) but with variable frequencies and impact on health-related quality of life (HRQoL). To define non-motor and motor profiles and their respective impact on HRQoL in CD patients using the newly validated Dystonia Non-Motor Symptoms Questionnaire (DNMSQuest). In an observational prospective multicentre case-control study, we enrolled 61 patients with CD and 61 age- and sex-

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Mental health of older people with mild and moderate intellectual disability in Australia

BACKGROUND: The progressive increase in life expectancy of people with intellectual disability (ID) has resulted in enhanced survival into old age and has also seen a growth in research on both lifelong and emerging ageing-related health issues. Health issues amongst provider-supported adults have been previously studied, but these studies have not always included older community-dwelling adults with ID. METHODS: A study examining the extent of

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Burden of Parkinson’s Disease by Severity: Health Care Costs in the U.S. Medicare Population

BACKGROUND: Current understanding of the health care costs of Parkinson’s disease (PD) and the incremental burden of advanced disease is incomplete. OBJECTIVES: The aim of this study was to assess the direct economic burden associated with advanced versus mild/moderate PD in a prevalent national sample of elderly U.S. Medicare beneficiaries with a PD diagnosis. METHODS: Analyzing 100% fee-for-service Medicare claims from 2013, we

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Interdisciplinary and Transdisciplinary Perspectives: On the Road to a Holistic Approach to Dementia Prevention and Care

Dementia, of which the most frequent form is Alzheimer’s disease, is a chronic and terminal condition with multi-factorial causes and numerous consequences on a patient’s life. Combining perspectives from different disciplines seems necessary for unraveling dementia’s entangled issues. Current dementia management is a multidisciplinary effort; however, integrating different disciplines as a holistic treatment process is often

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Health-related quality of life and emotional well-being after epilepsy surgery: A prospective, controlled, long-term follow-up

OBJECTIVE: To evaluate health-related quality of life (HRQOL) and emotional well-being in resective epilepsy surgery and nonoperated patients at long-term follow-up. METHODS: This is a prospective cohort study where patients undergoing presurgical work-up during 1995-1998 completed the Short-Form Health Survey (SF-36) and the Hospital Anxiety and Depression scale (HAD) at baseline, and 2 and 14 years after resective surgery or presurgical evaluation (nonoperated patients). SF-36 scores were compared to a normative population.

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Health-related quality of life in early Parkinson’s disease: the impact of nonmotor symptoms

Nonmotor symptoms (NMS) are common in patients with established Parkinson’s disease (PD) and have a major impact upon quality of life. We investigated the significance of NMS in relation to health-related quality of life (HRQoL) in patients with newly diagnosed PD. Patients and healthy controls were recruited as part of the Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation in Parkinson’s Disease Study.

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Burden and Quality of Life of Family Caregivers of Stroke Patients

The purpose of this study was to identify the level of burden and quality of life of family caregivers of stroke patients and to investigate the correlation between burden, quality of life (including physical, social, psychological, and environmental domains), age of caregivers, and the care period. A descriptive correlational cross-sectional study was performed, with a convenience sample of family caregivers (n = 30) of stroke

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Poor emotional well-being is associated with rapid progression in amyotrophic lateral sclerosis

The study aimed to determine the impact of emotional well-being on disease aggressiveness and survival in amyotrophic lateral sclerosis (ALS). In 224 patients with ALS (without significant cognitive deficits) the revised ALS Functional Rating Scale (physical function), the ALS Assessment Questionnaire (ALSAQ-40) for health-related Quality of Life and survival data were collected. Data analysis comprised logistic regression, Kaplan-

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Emotional well-being of close relatives to stroke survivors

OBJECTIVE: To compare the well-being of stroke patients’ relatives with that of a reference group, and to identify variables related to the well-being of the relatives. DESIGN: Cross-sectional study. SETTING: Outpatient hospital department and patients’ and relatives’ own homes. SUBJECTS: Fifty-four patients one year after a stroke and their closest relatives. A reference population consisted of 419 elderly people drawn at

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Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia

Non-motor symptoms (NMS) occur in patients with cervical dystonia (CD) but with variable frequencies and impact on health-related quality of life (HRQoL). To define non-motor and motor profiles and their respective impact on HRQoL in CD patients using the newly validated Dystonia Non-Motor Symptoms Questionnaire (DNMSQuest). In an observational prospective multicentre case-control study, we enrolled 61 patients with CD

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Within-Person Associations Between Financial Hardship and Cognitive Performance in the PATH Through Life Study

The aim of this study was to investigate the within-person associations between the experience of financial hardship and cognitive performance throughout adulthood. Three waves of data provided by 6,343 participants (49% men) were analyzed from a representative community-based sample from Canberra, Australia (2003-2015). The outcome was a composite measure reflecting fluid cognitive abilities. Financial

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Economic burden of stroke: a systematic review on post-stroke care

OBJECTIVES: Stroke is a leading cause for disability and morbidity associated with increased economic burden due to treatment and post-stroke care (PSC). The aim of our study is to provide information on resource consumption for PSC, to identify relevant cost drivers, and to discuss potential information gaps. METHODS: A systematic literature review on economic studies reporting PSC-associated data was performed

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The Contribution of Social Support, Professional Support, and Financial Hardship to Family Caregiver Life Satisfaction After Traumatic Brain Injury

OBJECTIVES: (a) To assess whether 3 changeable environmental variables (social support, professional support, and financial hardship) contribute to explaining differences in well-being of family caregivers after traumatic brain injury (TBI), above and beyond the influence of neurobehavioral functioning. (b) To assess the unique and relative contribution of social support, professional support, and financial hardship to life

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Trajectories of poverty and economic hardship among American families supporting a child with a neurodisability

BACKGROUND: Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well-being of family members, but evidence on the economic trajectories of families throughout the life course is missing. METHODS: Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and

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Financial Stress Interacts With CLOCK Gene to Affect Migraine

Previous studies suggested that both maladaptive stress response and circadian dysregulation might have a role in the background of migraine. However, effects of circadian genes on migraine have not been tested yet. In the present study, we investigated the main effect of rs10462028 of the circadian locomotor output cycles kaput (CLOCK) gene and its interaction with different stress factors on migraine. In our cross-sectional study

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