The social and economic burden of frontotemporal degeneration.

OBJECTIVE: To quantify the socioeconomic burden of frontotemporal degeneration (FTD) compared to previously published data for Alzheimer disease (AD). METHODS: A 250-item internet survey was administered to primary caregivers of patients with behavioral-variant FTD (bvFTD), primary progressive aphasia, FTD with motor neuron disease, corticobasal syndrome, or progressive supranuclear palsy. The survey included validated scales for disease staging, behavior, activities of daily living, caregiver burden, and health economics, as well as investigator-designed questions to capture patient and caregiver experience with FTD. RESULTS: The entire survey was completed by 674 of 956 respondents (70.5%). Direct costs (2016 US dollars) equaled $47,916 and indirect costs $71,737, for a total annual per-patient cost of $119,654, nearly 2 times higher than reported costs for AD. Patients ≥65 years of age, with later stages of disease, and with bvFTD correlated with higher direct costs, while patients <65 years of age and men were associated with higher indirect costs. An FTD diagnosis produced a mean decrease in household income from $75,000 to $99,000 12 months before diagnosis to $50,000 to $59,999 12 months after diagnosis, resulting from lost days of work and early departure from the workforce. CONCLUSIONS: The economic burden of FTD is substantial. Counting productivity-related costs, per-patient costs for FTD appear to be greater than per-patient costs reported for AD. There is a need for biomarkers for accurate and timely diagnosis, effective treatments, and services to reduce this socioeconomic burden.

The economic costs of progressive supranuclear palsy and multiple system atrophy in France, Germany and the United Kingdom.

Progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) are progressive disabling neurological conditions usually fatal within 10 years of onset. Little is known about the economic costs of these conditions. This paper reports service use and costs from France, Germany and the UK and identifies patient characteristics that are associated with cost. 767 patients were recruited, and 760 included in the study, from 44 centres as part of the NNIPPS trial. Service use during the previous six months was measured at entry to the study and costs calculated. Mean six-month costs were calculated for 742 patients. Data on patient sociodemographic and clinical characteristics were recorded and used in regression models to identify predictors of service costs and unpaid care costs (i.e., care from family and friends). The mean six-month service costs of PSP were €24,491 in France, €30,643 in Germany and €25,655 in the UK. The costs for MSA were €28,924, €25,645 and €19,103 respectively. Unpaid care accounted for 68-76%. Formal and unpaid costs were significantly higher the more severe the illness, as indicated by the Parkinson's Plus Symptom scale. There was a significant inverse relationship between service and unpaid care costs.

Cost-of-illness in multiple system atrophy and progressive supranuclear palsy.

Multiple system atrophy and progressive supranuclear palsy are disabling neurodegenerative disorders, also known as atypical parkinsonian syndromes. Currently, no health economic evaluations of these diseases are available. The objective of this study was to evaluate disease-related costs in German patients with multiple system atrophy and progressive supranuclear palsy and to identify cost-driving factors. We recruited 101 consecutive patients with multiple system atrophy (n = 54) and progressive supranuclear palsy (n = 47) in four German specialised movement disorder clinics. The health economic data were collected using comprehensive health economic questionnaires ("bottom-up" approach). Costs were calculated from the societal perspective in 2010 Euros. Independent cost-driving factors were identified in multiple regression analysis. The total semi-annual costs of atypical parkinsonian syndromes were EUR 16,670 (95% CI: 13,470-21,850). Direct costs accounted for 73% (inpatient care 31%, special equipment 24%, copayments of patients 21%, others 24%) and indirect costs for 27% of total costs. The economic burden imposed on patients by atypical parkinsonian syndromes accounted for 36% of their income. Independent cost-driving factors were younger age, disease severity, living without a partner and depression. The disease-related costs of atypical parkinsonian syndromes in Germany are high and above the costs reported for idiopathic Parkinson's disease. Disease-specific patterns of cost distributions in atypical parkinsonian syndromes and independent cost-drivers should be considered in future health economic evaluations and healthcare programs. The early diagnosis and treatment of depression in patients with atypical parkinsonian syndromes as well as programs aimed to improve social support will reduce disease-related costs.