RESUMO
BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disease that leads to progressive disability. Cost studies have mainly explored the early stages of the disease, whereas late-stage patients are underrepresented. OBJECTIVE: The aim is to evaluate the resource utilization and costs of PD management in people with late-stage disease. METHODS: The Care of Late-Stage Parkinsonism (CLaSP) study collected economic data from patients with late-stage PD and their caregivers in five European countries (France, Germany, the Netherlands, UK, Sweden) in a range of different settings. Patients were eligible to be included if they were in Hoehn and Yahr stage >3 in the on state or Schwab and England stage at 50% or less. In total, 592 patients met the inclusion criteria and provided information on their resource utilization. Costs were calculated from a societal perspective for a 3-month period. A least absolute shrinkage and selection operator approach was utilized to identify the most influential independent variables for explaining and predicting costs. RESULTS: During the 3-month period, the costs were 20,573 (France), 19,959 (Germany), 18,319 (the Netherlands), 25,649 (Sweden), and 12,156 (UK). The main contributors across sites were formal care, hospitalization, and informal care. Gender, age, duration of the disease, Unified Parkinson's Disease Rating Scale 2, the EQ-5D-3L, and the Schwab and England Scale were identified as predictors of costs. CONCLUSION: Costs in this cohort of individuals with late-stage PD were substantially higher compared to previously published data on individuals living in earlier stages of the disease. Resource utilization in the individual sites differed in part considerably among these three parameters mentioned. © 2024 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
Assuntos
Doenças Neurodegenerativas , Doença de Parkinson , Transtornos Parkinsonianos , Humanos , Transtornos Parkinsonianos/epidemiologia , Transtornos Parkinsonianos/terapia , Europa (Continente)/epidemiologia , Doença de Parkinson/epidemiologia , Doença de Parkinson/terapia , AlemanhaRESUMO
OBJECTIVE: The Care of Late-Stage Parkinsonism (CLaSP) study aimed to collect qualitative and standardized patient data in six European countries (France, Germany, Netherlands, Portugal, UK, Sweden) to enable a detailed evaluation of the underexplored late stages of the disease (Hoehn and Yahr stage > 3) using clinical, neuropsychological, behavioral, and health economic data. The aim of this substudy was to provide a health economic evaluation for the German healthcare system. METHODS: In Germany, 228 patients were included in the study. Costs were calculated from a societal perspective for a 3-month period. Univariate analyses were performed to identify cost-driving predictors. Total and direct costs were analyzed using a generalized linear model with a γ-distributed dependent variable and log link function. Indirect costs were analyzed using a binomial generalized linear model with probit link function. RESULTS: The mean costs for the 3-month period were approximately 20,000. Informal care costs and hospitalization are approximately 11,000 and 5000. Direct costs amounted to 89% of the total costs, and the share of indirect costs was 11%. Independent predictors of total costs were the duration of the disease and age. The duration of the disease was the main independent predictor of direct costs, whereas age was an independent predictor of indirect costs. DISCUSSION: Costs in the late stage of the disease are considerably higher than those found in earlier stages. Compared to the latter, the mean number of days in hospital and the need for care is increasing. Informal caregivers provide most of the care. CLINICAL TRIAL REGISTRATION: The protocol was registered at ClinicalTrials.gov as NCT02333175 on 7 January, 2015.
Assuntos
Doença de Parkinson , Efeitos Psicossociais da Doença , Europa (Continente) , França , Alemanha , Custos de Cuidados de Saúde , Hospitalização , Humanos , Doença de Parkinson/terapiaRESUMO
BACKGROUND: Treatment of patients with late-stage parkinsonism is often sub-optimal. OBJECTIVE: To test the effectiveness of recommendations by a movement disorder specialist with expertise in late-stage parkinsonism. METHODS: Ninety-one patients with late-stage parkinsonism considered undertreated were included in apragmatic a pragmatic multi-center randomized-controlled trial with six-month follow-up. The intervention group received a letter with treatment recommendations to their primary clinician based on an extensive clinical assessment. Controls received care as usual. The primary outcome was the Unified Parkinson Disease Rating Scale (UPDRS)part-II (Activities of Daily Living). Other outcomes included quality-of-life (PDQ-8), mental health (UPDRS-I), motor function (UPDRS-III), treatment complications (UPDRS-IV), cognition (Mini-mental-state-examination), non-motor symptoms (Non-Motor-Symptoms-scale), health status (EQ-5D-5L) and levodopa-equivalent-daily-dose (LEDD). We also assessed adherence to recommendations. In addition to intention-to-treat analyses, a per-protocol analysis was conducted. RESULTS: Sample size calculation required 288 patients, but only 91 patients could be included. Treating physicians followed recommendations fully in 16 (28%) and partially in 21 (36%) patients. The intention-to-treat analysis showed no difference in primary outcome (between-group differenceâ=â-1.2, pâ=â0.45), but there was greater improvement for PDQ-8 in the intervention group (between-group differenceâ=â-3.7, pâ=â0.02). The per-protocol analysis confirmed these findings, and showed less deterioration in UPDRS-part I, greater improvement on UPDRS-total score and greater increase in LEDD in the intervention group. CONCLUSIONS: The findings suggest that therapeutic gains may be reached even in this vulnerable group of patients with late-stage parkinsonism, but also emphasize that specialist recommendations need to be accompanied by better strategies to implement these to further improve outcomes.
Assuntos
Atividades Cotidianas , Fidelidade a Diretrizes , Avaliação de Resultados em Cuidados de Saúde , Transtornos Parkinsonianos/terapia , Qualidade de Vida , Índice de Gravidade de Doença , Tempo para o Tratamento , Idoso , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVES: Caregivers of patients with late-stage idiopathic Parkinson disease (IPD) and late-stage progressive supranuclear palsy (PSP) often suffer from severe psychological strain themselves. This study investigates the influence of the different kind of symptoms in IPD and PSP on the psychological burden of the caregivers. METHODS: Twenty patients with late-stage IPD and 20 patients with late-stage PSP and their caregivers were investigated. To measure the degree of motor, cognitive, and affective impairment of the patients, the instruments Subscale III of the Unified Rating Scale for Parkinsonism (UPDRS-III), a shortened 24-item version of the Mini-Mental State Examination, and the Geriatric Depression Scale (GDS-30) were used. Psychological burden of the caregivers was determined by using the Beck Depression Inventory (BDI-II) and the Zarit Caregiver Burden Inventory (ZBI). RESULTS: Patients with IPD suffered from a higher level of depression (GDS-30: 15.9 vs 10.2, P = .020), whereas patients with PSP showed greater motor impairment (UPDRS-III: 38.3 vs 29.9, P = .002). Caregivers of both groups reported high psychological burden (ZBI: 36.5 in IPD vs 42.8 in PSP) and symptoms of a depression (BDI-II: 12.5 in IPD vs 15.1 in PSP). No significant influence of motor impairment, cognitive dysfunction, and depressive symptoms of the patient on the burden of the caregiver could be found. CONCLUSIONS: Psychological strain and depression among caregivers seem to become even more relevant in the late stages of IPD and PSP. Further studies will be necessary to investigate the specific determining factors in late-stage parkinsonian syndromes.