The burden of Parkinson disease (PD) and concomitant comorbidities

Movement Disorders, 2000

BACKGROUND: Adequate provision of appropriate healthcare resources for patients with chronic neurologic disorders such as Parkinson's disease (PD) requires knowledge of the impact of the illness on their life. Quality of life (QoL) instruments measure the impact of the disease on general wellbeing that cannot be fully appreciated by clinical rating scales and allow comparisons with other patient groups and the general population.

Movement Disorders, 1998

Parkinson's disease (PD) is likely to have a substantial impact on an individual's health-related quality of life (HRQL), health-related resource use, and productivity. Data about the health burdens of PD by disease stage are fundamental to understanding the effectiveness of care, both from a clinical and a fiscal point of view. This study's goal was to describe the associations of patient-reported HRQL and economic characteristics with PD stage. We hypothesized that later stages of PD would be associated with poorer HRQL, greater healthrelated resource use, and lower work productivity than early stages of PD. We used a cross-sectional analysis to study 193 PD patients attending two hospital-based neurology clinics. Self-administered questionnaires and in-person interviews measured clinical features, functional status, general health perceptions, well-being, overall HRQL, work productivity, and health-related resource use. Consistent, strong associations were found between stage and functional status, general health perceptions, well-being, and overall HRQL even after controlling for age, gender, and comorbid conditions. Most resource use and work productivity measures were also associated with disease stage. However, physician services use was not. This study confirms that the burdens of illness are progressively higher for PD patients with early, moderate, and advanced illness. The results suggest that such important facets of the health burden as HRQL and health-related resource use may be seriously misjudged if not carefully measured but inferred from clinical observations alone.

Journal of Neurology, Neurosurgery & Psychiatry, 2006

Parkinsonism & Related Disorders, 2010

Parkinson's disease (PD) is associated with a reduction of health-related quality of life (HrQoL). Demographic and clinical determinants of HrQoL in PD have been previously investigated, but less is known about its social determinants. Data on HrQoL in Austrian patients with PD are not available. The objective of this crosssectional survey was to evaluate HrQoL of Austrian patients with PD and to provide a comprehensive analysis of its social and clinical determinants. Outpatients (n = 100) with idiopathic PD were recruited in the Department of Neurology of the University Innsbruck. Clinical status was estimated using the Unified Parkison's Disease Rating Scale (UPDRS). HrQoL was evaluated using a generic instrument, the EuroQol (EQ5D and EQ-VAS). Independent determinants of HrQoL were assessed in multivariate regression analysis. The proportion of PD patients with moderate or severe problems in at least one dimension of the EQ5D was significantly higher than in the general population (90.1 vs. 35.1%, P \ 0.001). The mean EQ-VAS score in PD was lower than in the general population (48.9 ± 19.6 vs. 77.0 ± 20.8, P \ 0.001). Social support (number of household members) was identified as an independent social determinant of HrQoL. Demographic and clinical determinants were age, depression, UPDRS and motor fluctuations. The analysis of determinants of HrQoL showed that a greater attention should be paid to social support and home care. Our data on HrQoL in PD should be considered in the development of new health care programs.

Journal of Neurology, 2011

Parkinson's disease (PD) and atypical parkinsonism (AP) cause a significant socioeconomic burden, but there is insufficient information about the total disease burden at a national level. Thus, the goal of this study was to estimate the excess direct and indirect costs of PD and AP in a national sample. Using records from the Danish National Patient Registry (1997)(1998)(1999)(2000)(2001)(2002)(2003)(2004)(2005)(2006)(2007), 13,400 PD and 647 AP patients were identified and compared with, respectively, 53,600 and 2,588 control cases randomly selected with respect to age, gender, civil status, and geographic location. Direct costs including frequencies of primary and sector contacts and procedures, and medication from primary and secondary sectors were obtained from the Danish Ministry of Health, the Danish Medicines Agency, and the National Health Security. Indirect costs, which included labor supply and social transfer payments, were based on income data derived from the Coherent Social Statistics. Patients with PD and AP had significantly higher rates of health-related contact and medication use and a higher socioeconomic cost. Furthermore, they had very low employment rates, and those in employment had a lower income level than employed control subjects. The annual mean excess health-related cost was €6,500 ($8,975/ £5,543) and €9,771 ($13,491/£8,332) for each patient with PD and AP, respectively. In addition, the patients with PD and AP received an annual mean excess social transfer income of €324 (£276/$447) and €844 (£719/$1,165), respectively. The employment-and health-related consequences could be identified up to 8 years before the first diagnosis and increased with disease advancement. PD and AP have major socioeconomic consequences for patients and society. The health effects are present for up to more than 8 years before a diagnosis of PD/AP.

Journal of Neurology, 1998

npj Parkinson's Disease, 2016

Understanding how a person lives with a chronic illness, such as Parkinson's disease (PD), is necessary to provide individualized care and professionals role in person-centered care at clinical and community levels is paramount. The present study was aimed to analyze the psychometric properties of the Living with Chronic Illness-PD Scale (EC-PC) in a wide Spanish-speaking population with PD. International cross-sectional study with retest was carried out with 324 patients from four Latin American countries and Spain. Feasibility, acceptability, scaling assumptions, reliability, precision, and construct validity were tested. The study included 324 patients, with age (mean ± s.d.) 66.67 ± 10.68 years. None of the EC-PC items had missing values and all acceptability parameters fulfilled the standard criteria. Around two-third of the items (61.54%) met scaling assumptions standards. Concerning internal consistency, Cronbach's alpha values were 0.68-0.88; item-total correlation was 40.30, except for two items; item homogeneity index was 40.30, and inter-item correlation values 0.14-0.76. Intraclass correlation coefficient for EC-PC stability was 0.76 and standard error of measurement (s.e.m.) for precision was 8.60 (for a EC-PC s.d. = 18.57). EC-PC presented strong correlation with social support (r S = 0.61) and moderate correlation with life satisfaction (r S = 0.46). Weak and negligible correlations were found with the other scales. Internal validity correlations ranged from 0.46 to 0.78. EC-PC total scores were significantly different for each severity level based on Hoehn and Yahr and Clinical Impression of Severity Index, but not for Patient Global Impression of Severity. The EC-PC has satisfactory acceptability, reliability, precision, and validity to evaluate living with PD.

Movement Disorders, 2005

This study quantifies direct medical care costs for individual patients with Parkinson's disease (PD) and projects total national costs of PD. Anonymous, patientlevel data on health care utilization and cost were obtained from Medstat's MarketScan Research Databases. Patients were selected for study if they had either two instances of a diagnosis of PD or one diagnosis and two or more prescriptions for PD-related medication. A control group of persons without PD was selected for comparison. Total annual health care utilization and costs were calculated for both PD patients and controls. A total of 20,016 patients with PD were identified and followed up for an average of 853 days. The mean age of the patients was 73.6 years, and 51.2% were women. Total annual direct costs were $23,101 (SD 27,529) per patient with PD versus $11,247 (SD 16,486) for controls. The regression-adjusted incremental direct cost of PD versus control was $10,349 (95% confidence interval, 9,053, 11,645). Adding $25,326 in indirect costs, and multiplying by 645,000 cases of PD in the United States, the total cost to the nation is projected to be $23 billion annually. This estimate is higher than most previous studies, with important implications for health care delivery systems worldwide.

PLoS ONE, 2014

Background: Patient reported outcomes and costs of illness are useful to capture some of the multiple effects of a disease and its treatments. Our aim was to assess quality of life (QoL) and costs of Parkinson's disease (PD) in Hungary, and to analyze their associations. Methods: A cross-sectional questionnaire survey was conducted in one neurology university clinic. Clinical characteristics, PD related resource utilizations and productivity loss in the past 12 months were recorded; the Hoehn&Yahr (HY) scale, PDQ-39 and EQ-5D questionnaires were applied. Cost calculation was performed from the societal perspective. Results: 110 patients (34.5% female) were involved with mean age of 63.3 (SD = 11.3) and disease duration of 8.2 (SD = 5.8) years. PDQ-39 summary score was 48.1 (SD = 13.4). The average EQ-5D score was 0.59 (SD = 0.28), and was significantly lower than the population norm in age-groups 45-74. The correlation was significant between EQ-5D and PDQ-39 (20.47, p = 0.000), the HY scale and EQ-5D (20.3416, p = 0.0008) and PDQ-39 (0.3419, p = 0.0006) scores. The total mean cost was J6030.2 (SD = 6163.0)/patient/year (direct medical 35.7%, direct non-medical 29.4%, indirect cost 34.9%). A one year increase in disease duration and 0.1 decrease of the EQ-5D utility score increase the yearly costs by 8 to 10%, and 7.8%, respectively. The effect of the PDQ-39 score on total cost was not significant. Conclusions: Disease severity and public health importance of PD are clearly demonstrated by the magnitude of QoL loss. PD-related costs are substantial, but are much lower in Hungary than in Western European countries. Disease duration and EQ-5D score are significant proxy of costs.