Multidisciplinary care for people with Parkinson’s disease:the new kids on the block!

INTRODUCTION: Parkinson's disease (PD) is a chronic multisystem disorder that causes a wide variety of motor and non-motor symptoms. Over time, the progressive nature of the disease increases the risk of complications such as falls and loss of independence, having a profound impact on quality of life. The complexity and heterogeneity of symptoms therefore warrant a holistic, multidisciplinary approach. Specific healthcare professionals, e.g. the movement disorders neurologist and the PD nurse specialist, are considered essential members of this multidisciplinary team. However, with our increasing knowledge about different aspects of the disease, other disciplines are also being recognized as important contributors to the healthcare team. Areas covered: The authors describe a selection of these relatively newly-recognized disciplines, including the specialist in vascular medicine, gastroenterologist, pulmonologist, neuro-ophthalmologist, urologist, geriatrician/elderly care physician, palliative care specialist and the dentist. Furthermore, they share the view of a person with PD on how patients and caregivers should be involved in the multidisciplinary team. Finally, they have included a perspective on the new role of the movement disorder neurologist, with care delivery via 'tele-neurology'. Expert commentary: Increased awareness about the potential role of these 'new' professionals will further improve disease management and quality of life of PD patients

Care of Late-Stage Parkinsonism: Resource Utilization of the Disease in Five European Countries

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

The association of comorbidity with Parkinson's disease-related hospitalizations

Introduction: Unplanned hospital admissions associated with Parkinson's disease could be partly attributable to comorbidities. Methods: We studied nationwide claims databases and registries. Persons with newly diagnosed Parkinson's disease were identified based on the first Parkinson's disease-related reimbursement claim by a medical specialist. Comorbidities were classified based on the Charlson Comorbidity Index. We studied hospitalization admissions because of falls, psychiatric diseases, pneumonia and urinary tract infections, PD-related hospitalizations-not otherwise specified. The association between comorbidities and time-to-hospitalization was estimated using Cox proportional hazard modelling. To better understand pathways leading to hospitalizations, we performed multiple analyses on causes for hospitalizations. Results: We identified 18 586 people with newly diagnosed Parkinson's disease. The hazard of hospitalization was increased in persons with peptic ulcer disease (HR 2.20, p = 0.009), chronic obstructive pulmonary disease (HR 1.61, p < 0.001), stroke (HR 1.37, p = 0.002) and peripheral vascular disease (HR 1.31, p = 0.02). In the secondary analyses, the hazard of PD-related hospitalizations-not otherwise specified (HR 3.24, p = 0.02) and pneumonia-related hospitalization (HR 2.90, p = 0.03) was increased for those with comorbid peptic ulcer disease. The hazard of fall-related hospitalization (HR 1.57, p = 0.003) and pneumonia-related hospitalization (HR 2.91, p < 0.001) was increased in persons with chronic obstructive pulmonary disease. The hazard of pneumonia-related hospitalization was increased in those with stroke (HR 1.54, p = 0.03) or peripheral vascular disease (HR 1.60, p = 0.02). The population attributable risk of comorbidity was 8.4%. Conclusion: Several comorbidities increase the risk of Parkinson's disease related-hospitalization indicating a need for intervention strategies targeting these comorbid disorders.Pattern Recognition and Bioinformatic

Caregiver burden in late-stage Parkinsonism and its associations

Copyright © 2020, © SAGE PublicationsBackground: Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism. Patients and methods: Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients’ motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers’ health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). Results: The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients’ neuropsychiatric features on the total NPI score (r = 0.38, p < 0.0001), total NMSS score (r = 0.28, p < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers’ EQ-5D mood and pain scores were also associated with higher ZBI scores (all p < 0.001). Conclusion: The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.The study was funded by the European Commission (Joint Programme-Neurodegenerative Disease Research “European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases”) through national funding bodies in all 6 countries (Economic and Social Research Council ES/L009250/1; BMBF, Marburg, Germany 01ED1403A, Munich, Germany 01ED1403B, Bordeaux, France: ANR-13-JPHC-0001-07, Lisbon, Portugal: HC/0002/2012, Lund, Sweden: HC-559-002, Nijmegen, Holland, 733051003). AS was supported by the National Institute for Health Research UCL/UCLH Biomedical Research Centre. AH was supported by co-funding of Groenhuysen organization and Stichting Beroepsopleiding Huisartsen.info:eu-repo/semantics/publishedVersio

The prevalence and determinants of neuropsychiatric symptoms in late‐stage Parkinsonism

© 2020 International Parkinson and Movement Disorder SocietyBackground: Late-stage parkinsonism and Parkinson's disease (PD) are insufficiently studied population. Although neuropsychiatric symptoms (eg, psychosis, depression, anxiety, behavioral problems) are frequently present, their prevalence and clinical predictors remain unknown. Objective: To determine the prevalence and predictors of neuropsychiatric symptoms in late-stage PD. Methods: We conducted a multinational study of patients with PD with ≥7 years disease duration and either a Hoehn and Yahr stage ≥4 or a Schwab and England score ≤ 50% in the on stage. Neuropsychiatric symptoms were assessed through interviews with carers using the Neuropsychiatric Inventory, with a frequency × severity score ≥ 4, indicating clinically relevant symptoms. The determinants analyzed were demographic characteristics, medication, and motor and nonmotor symptoms. Univariate and multivariate logistic analyses were performed on predictors of clinically relevant neuropsychiatric symptoms. Results: A total of 625 patients were recruited in whom the Neuropsychiatric Inventory could be completed. In 92.2% (576/625) of the patients, at least 1 neuropsychiatric symptom was present, and 75.5% (472/625) had ≥1 clinically relevant symptom. The most common clinically relevant symptoms were apathy (n = 242; 38.9%), depression (n = 213; 34.5%), and anxiety (n = 148; 23.8%). The multivariate analysis revealed unique sets of predictors for each symptom, particularly the presence of other neuropsychiatric features, cognitive impairment, daytime sleepiness. Conclusion: Neuropsychiatric symptoms are common in late-stage PD. The strongest predictors are the presence of other neuropsychiatric symptoms. Clinicians involved in the care for patients with late-stage PD should be aware of these symptoms in this specific disease group and proactively explore other psychiatric comorbidities once a neuropsychiatric symptom is recognized.The Care of late-stage Parkinsonism-study (CLaSP) is being funded by the European Commission (Joint Programme–Neurodegenerative DiseaseResearch “European Research Projects for the Evaluation of Health Care Policies, Strategies and Interventions for Neurodegenerative Diseases”) through national funding bodies in all 6 countries(Economic and Social Research Council ES/L009250/1; BMBF, Marburg, Germany 01ED1403A, Munich, Germany 01ED1403B; Bordeaux, France, ANR-13-JPHC-0001-07; Lisbon, Portugal, HC/0002/2012; Lund, Sweden, HC-559-002; Nijmegen, Hol-land, 733051003). A.L.A.J.H. was supported by the Groenhuysen organization and Stichting Beroepsopleiding Huisartsen. A.S. was supported by the National Institute for Health Research University College London/University College London Hospital Biomedical Research Centre.info:eu-repo/semantics/publishedVersio

Optimizing Treatment in Undertreated Late-Stage Parkinsonism : A Pragmatic Randomized Trial

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 difference=-1.2, p=0.45), but there was greater improvement for PDQ-8 in the intervention group (between-group difference=-3.7, p=0.02). 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

Mov Disord

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.Care for Late Stage Parkinsonis