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BACKGROUND: Data on the long-term survival and incidence of disability milestones after subthalamic nucleus deep brain stimulation (STN-DBS) in Parkinson's disease (PD) is limited. OBJECTIVES: To estimate mortality and assess the frequency/time-to-development of disability milestones (falls, freezing, hallucinations, dementia, and institutionalization) among PD patients post STN-DBS. METHODS: A longitudinal retrospective study of patients undergoing STN-DBS. For mortality, Cox proportional hazards regression analysis was performed. For disease milestones, competing risk analyses were performed and cumulative incidence functions reported. The strength of association between baselines features and event occurrence was calculated based on adjusted hazard ratios. RESULTS: The overall mortality for the 109 patients was 16 % (62.1 ± 21.3 months after surgery). Falls (73 %) and freezing (47 %) were both the earliest (40.4 ± 25.4 and 39.6 ± 28.4 months, respectively) and most frequent milestones. Dementia (34 %) and hallucinations (32 %) soon followed (56.2 ± 21.2 and mean 60.0 ± 20.7 months after surgery, respectively). Higher ADL scores in the OFF state and higher age at surgery were associated with falls, freezing, dementia and institutionalization. CONCLUSIONS: Long-term mortality rate is low after STN-DBS. Disease milestones occur later during the disease course, with motor milestones appearing first and at a higher frequency than cognitive ones.

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Background: Functional mobility (FM) is the person's ability to move to accomplish daily living tasks and activities. FM limitations are common in Parkinson's disease, increase with disease progression, and can be highly disabling. Although several studies in Parkinson's disease (PD) field use this concept, only recently, a formal definition has been proposed. Objective: We aimed to explore patient's and health professional's perspectives of FM in PD. Methods: A focus group methodology has been used. Four focus groups, with a total of 10 patients and 10 health professionals, were performed. Six patients were early stage and four advanced stage. The health professional's group was composed of five neurologists and five physiotherapists. The suitability of the new concept, the impact of FM limitations in PD patient's daily routine, and the potential benefit of walking aids have been discussed. Results: All participants were able to provide a spontaneous definition of FM, matching with the proposed concept. All agreed that PD affects patient's FM, increasing the limitations with disease progression, and with the existence of a serious prejudice with walking aids that hinders its use. Early-stage patient's perspective seems to be more in line with neurologist's perspective, while the views of advanced-stage patients were closer to physiotherapist's views. Conclusion: FM concept was considered as intuitive and useful. FM limitations have an important physical and social impact in the advanced stage of the disease. Although patients and health professionals acknowledge walking aid's benefit improving patient's FM, the prejudice associated with this type of tools limits its recommendation and use.

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People living with Parkinson's disease (PwP) experience a wide range of motor and non-motor symptoms associated with increasing complexity of care delivery. A multispecialty approach has been presented as an intuitive solution for tailored and comprehensive care delivery. Nevertheless, past trials of both multidisciplinary or interdisciplinary care models in PD suggested no measurable change to a small benefit in quality of life (QoL) and failed to show economic sustainability. We propose a home-based community-centred integrated care (iCARE-PD) for PwP as a pragmatic solution to harness the potential of existing care resources using an integrated care strategy, enable self-management support and implement technology-enabled care. The iCARE-PD model is based on Freeman's concept of continuity of care and the expanded Chronic Care Model for organization of care strategies. A home-based community-centred integrated care has immediate implications for clinical practice, with potential benefits in rural areas or lower-income countries, by enhancing access to care with optimized costs. There is a need to establish which and how interventions may be used as an instrument of care in each local deployment of the iCARE-PD model. We put forward a multidisciplinary framework to generate the evidence supportive of its implementation as the standard of care in the future and delineate the core strategies to secure the implementation of this care approach across different health care systems to ensure feasibility and economic sustainability. We envision this model becoming a paradigm of personalized care transferable to people with atypical forms of neurodegenerative parkinsonism.

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BACKGROUND: Clinical management options for dysphagia include the use of thickeners to increase the consistency of liquids. Health professionals may not be aware of the nutrition value of these products, since there are no such recommendation in clinical guidelines. Our aim was to estimate the added nutrition value of the 2 types of commercial thickeners (starch and xanthan gum) to daily nutrition intake and compare their nutrition value for nectar, honey, and pudding consistencies. Additionally, we compared the nutrition value of both thickeners with a high-energy powder, since they share the same main ingredients. METHODS: We collected recommended dosages for obtaining the 3 different consistencies and nutrition content from the technical food labels. Daily intake of fluids was estimated from the Portuguese National Food, Nutrition and Physical Activity Survey. Total daily amount of thickener needed was estimated, as well as their correspondent nutrition contributions. RESULTS: Estimated daily fluid intake was 2439 mL. Starch thickeners provide significantly more energy at all consistencies than xanthan gum provides (423-846 kcal, P < 0.05, and 103-308 kcal, P < 0.05, respectively). Significantly more fiber is provided by xanthan gum thickeners (9 g in nectar and 27 g in pudding consistencies, P < 0.05). Median energy and carbohydrate values per 100 g of high-energy powder modules and starch thickeners are similar. CONCLUSION: The nutrition value of thickeners should be routinely considered in the nutrition assessment and planning of patients with dysphagia for liquids, since they contribute significantly with energy, carbohydrate, and fiber.

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Nervous system involvement in Hepatitis C virus infection (HCV) has been associated to neuro-immunological deregulation, particularly in interferon-alpha treated patients. We present a case of optic and brainstem demyelinating disorder associated with aquaporin-4 (AQP4) antibodies. A 48 year-old woman, with previous diagnosis of non-treated hepatitis C, presented with a 10-year history of long-standing gait disturbance. Neurological examination disclosed a grade 4 spastic paraparesis, lower limb hyperreflexia, right positive Hoffmann sign, bilateral Babinski sign and spastic gait only possible with bilateral support. Spinal cord magnetic resonance imaging (MRI) was normal. Brain MRI showed an asymmetric, bilateral pontine and left mesencephalic hypersignal in T2 and FLAIR, with no gadolinium enhancement. Visual evoked potential revealed bilateral pre-chiasmatic conduction delay. Blood tests showed a positive anti-HCV antibody and a positive AQP4 antibody. Cerebrospinal fluid (CSF) analysis was normal, with no oligoclonal bands. The patient started intravenous (IV) methylprednisolone followed by oral prednisolone; simultaneously, interferon-alpha and ribavirin. There was a slight clinical improvement within the first weeks. There are 7 cases describing association between HCV infection and central nervous system (CNS) demyelination with positive AQP4 antibody, 4 patients under interferon-α. AQP4 antibodies should be tested in patients infected with HCV and CNS demyelination.

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