Abstract
Introduction: Spina bifida is the most common permanently disabling birth defect in the United States and requires lifelong, multi-specialty care. The cost of such care has the potential to result in financial toxicity – the ‘objective financial burden’ and ‘subjective financial distress’ which can negatively impact clinical outcomes. While this concept has been extensively studied in other areas of medicine, particularly oncology, financial toxicity has not yet been examined in pediatric urology or in individuals with spina bifida and their families/caregivers.
Found Items
The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: A Mixed Methods Study
Abstract
The economic burden is a major concern for parents/caregivers of children with cerebral palsy (CP). This study used the sequential explanatory mixed-method approach to explorethe economic burden on parents/caregivers with a CP child in Malaysia and the factors associated with the economic burden. The study period spanned April 2020 and December 2020. A total of 106 questionnaire respondents were selected for the quantitative part, and 15 were interviewed to obtain qualitative input. A retrospective costing analysis was conducted based on the cost data obtained from the questionnaire. The majority of the children were GrossMotor Function Classification System (GMFCS) Level 5 (71%), quadriplegic (63%), and aged >4 years (90%). The estimated annual median total economic burden on the parents/caregivers per child in 2020 was RM52,540.00 (~USD12,515.03), with indirect cost being the greatest cost (RM28,800.00, ~USD6860.16), followed by developmental cost (RM16,200.00, ~USD3858.84), direct healthcare cost (RM4540.00, ~USD1081.43) and direct non-healthcare cost (RM3000.00, ~USD714.60). The annual household income was identified as a significant determinant factor (p=0.019, 95% CI: 0.04, 0.40) of the economic burden. The participants’ responses during the in-depth interview in the qualitative part of the study supported the premise that socioeconomic factors play a substantial role in determining the total economic burden. Our findings may aid local policymakers when planning the greater provision of support to the affected families in the future, especially for the parents/caregivers of children with CP, who are facing socioeconomic challenges.
Patient-reported financial toxicity in multiple sclerosis: Predictors and association with care non-adherence
OBJECTIVE: To measure the longitudinal changes in three domains of financial hardship (i.e., financial worry, cost-related care non-adherence, material hardship) in patients with MS. METHODS: A convenience sample of 559 adult patients with a known diagnosis of MS visiting a single outpatient neurology clinic between July 2018 to February 2020 were approached. Patients completed surveys at baseline and 3, 6, 9, and 12 months post-enrollment.
Longitudinal changes of financial hardship in patients with multiple sclerosis
BACKGROUND: Multiple sclerosis (MS) results in considerable financial burdens due to expensive treatment and high rates of disability, which could both impact care non-adherence. OBJECTIVE: To measure financial toxicity in MS patients, identify its predictors and association with care non-adherence. METHODS: Adult MS patients visiting neurology clinic (June 2018 to February 2019) were consented to complete a survey. Financial toxicity was measured
Reduced cognitive function contributes to economic burden of multiple sclerosis
BACKGROUND: Cognitive impairment is a common symptom of multiple sclerosis (MS). The effect of cognitive impairment in people with MS on employment, quality of life and mental health is known, however, few studies have investigated if cognitive deficits contribute to the economic burden of MS. OBJECTIVE: To investigate if cognitive impairment correlates with the economic burden of MS. METHODS: The client service receipt inventory was used to
A population-based sex-stratified study to understand how health status preceding traumatic brain injury affects direct medical cost
OBJECTIVE: To understand how pre-injury health status present five-years preceding traumatic brain injury (TBI) affects direct medical cost two years post-injury. METHODS: Patients age ≥19 years in the emergency department (ED) or acute care for a TBI between April 1, 2007 and March 31, 2014 in Ontario, Canada (N = 55,669) were identified from population-based health administrative data. Forty-three factors of pre-injury health status (i.e.,
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
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-
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
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
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
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.
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.
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
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-
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
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
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
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
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
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
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
