Telephone number: +31-0243615202 Word count for abstract: 200. Word count for text: 7143 words. Number of references: 139. Number of figures: 2. Number of tables: 2. AbstractIntroduction: 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: We describe a selection of these relatively newly-recognized disciplines, including the specialist in vascular medicine, gastroenterologist, pulmonologist, neuroophthalmologist, urologist, geriatrician/elderly care physician, palliative care specialist and the dentist. Furthermore, we share the view of a person with PD on how patients and caregivers should be involved in the multidisciplinary team. Finally, we 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.

Declaration of interest:The CLaSP study is 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").

BackgroundBackground: 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 Objective: To determine the prevalence and predictors of neuropsychiatric symptoms in late-stage PD. Methods 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 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 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.

Background: 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.

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One half of institutionalized PD patients had OH, of whom half were probably symptomatic. OH was rarely noted in the medical records, suggesting underdiagnosis. Finally, OH was rarely treated, suggesting undertreatment.

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 a pragmatic multi-center randomizedcontrolled 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 were 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 specialist recommendations. In addition to intention-to-treat analyses, a per-protocol analysis was conducted only including those in whom recommendations were at least partially followed. Results Sample size calculation required 288 patients, but only 91 patients could be included. Treating physicians followed recommendations at least partially in 37 (64%) 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 also showed less deterioration in UPDRS-part I, greater improvement on UPDRS-total score and greater increase in LEDD in the intervention group. Conclusions There was no improvement on the UPDRS-ADL part in this study, which was limited by underrecruitment and limited implementation of recommendations, but there was a positive change in quality of life. These findings suggest that therapeutic gains may be reached even in this vulnerable group of patients with late-stage parkinsonism, but also emphasize the need for better strategies to implement specialist recommendations to further improve outcomes.