Co-Designing Digital Technologies for Improving Clinical Care in People with Parkinson's Disease: What Did We Learn?

The healthcare model is shifting towards integrated care approaches. This new model requires patients to be more closely involved. The iCARE-PD project aims to address this need by developing a technology-enabled, home-based, and community-centered integrated care paradigm. A central part of this project is the codesign process of the model of care, exemplified by the active participation of patients in the design and iterative evaluation of three sensor-based technological solutions. We proposed a codesign methodology used for testing the usability and acceptability of these digital technologies and present initial results for one of them, MooVeo. Our results show the usefulness of this approach in testing the usability and acceptability as well as the opportunity to incorporate patients' feedback into the development. This initiative will hopefully help other groups incorporate a similar codesign approach and develop tools that are well adapted to patients' and care teams' needs.

Expiratory Muscle Strength Training in Multiple System Atrophy: A Pilot Study.

Background: The effects of expiratory muscle strength training (EMST) has not yet been investigated in MSA patients. Objective: The primary objective was to test the effects of EMST on expiratory muscle strength and voluntary peak cough flow (vPCF) in patients with multiple system atrophy (MSA). The secondary objective was to assess the suitability of the pulmonary dysfunction index as a tool for identifying MSA patients with expiratory muscle weakness and reduced voluntary peak cough flow. Methods: This was an open label, non-controlled study, with an 8-week intensive home-based EMST protocol. The outcome measures included: maximal expiratory pressure (MEP) and vPCF. The sensitivity and specificity of the index of pulmonary dysfunction in the respiratory diagnostic process were assessed using receiver operating characteristic (ROC) analysis. Results: Fifteen MSA patients were enrolled in the study. Twelve MSA patients completed the training period. After the training period, MEP significantly increased (P = 0.006). Differences in vPCF were not significant (P = 0.845). ROC analysis indicated that the overall respiratory diagnostic accuracy of the index of pulmonary dysfunction had an outstanding capability to detect patients at risk of less effective coughing and an acceptable capability of detecting patients with decreased expiratory muscle strength. Conclusions: These findings indicate non-significant differences in vPCF after 8 weeks of EMST. The index of pulmonary dysfunction appears to be a promising prognostic screening tool for identifying altered cough efficacy in MSA patients. Test cut-offs may be used to select an appropriate respiratory physiotherapy technique.

Severely disabled multiple sclerosis patients can achieve the performance of healthy subjects after expiratory muscle strength training.

BACKGROUND: The efficacy of expiratory muscle strength training (EMST) in patients with multiple sclerosis (MS) is controversial. The current study's primary objective was to test the effects of a progressive and intensive 12 week home based EMST program on expiratory muscle strength and voluntary cough strength. The secondary objective was to determine the retention of EMST benefits. METHODS: Thirty-five severely disabled MS patients (relapsing-remitting MS, n = 15; primary progressive MS, n = 5; secondary progressive MS, n = 15) with Expanded Disability Status Scale (EDSS) 5.0 - 7.0 were included in the study. Within 36 weeks, patients completed 12 weeks of a non-training period, 12 weeks of EMST and 12 weeks of a detraining period. Maximal expiratory pressure (PEmax) and voluntary peak cough flow (vPCF) were assessed 4 times: at week 0 (baseline), week 12 (pre-training), week 24 (post-training), and week 36 (post-detraining). MS patients included in the study were compared to age- and sex-matched healthy subjects. In the healthy controls, the PEmax and vPCF were assessed once to obtain normative data. RESULTS: Twenty-six patients completed the training period (mean age 52.7 ± 10.2, EDSS 5.9 ± 0.6) and were compared to 26 sex- and age-matched healthy subjects (mean age 53.5 ± 5.8). Patients with MS had a lower PEmax (p = 0.002) and vPCF (p = 0.022) at baseline than the healthy control group. In training period, the PEmax and vPCF increased (p = 0.0000; effect size: d = 0.94 and p = 0.0036; d = 0.57 respectively) in comparison with the non-training period (p = 0.0692; d = -0.36 and p = 0.5810; d = 0.11 respectively). Following the 12 weeks detraining period, the PEmax and vPCF declined but remained 16.7% and 5.5% respectively above the pre-training values. No differences were observed in the PEmax and vPCF between the MS group at the post-training and post-detraining timepoint and the healthy control group normative values. CONCLUSIONS: EMST improves expiratory muscle strength and voluntary cough strength in severely disabled MS patients.

Early manifestation of spasticity after first stroke in the territory of the internal carotid artery: A prospective multicenter study.

AIMS: The main aim of this study was to provide an estimate of the incidence and prevalence of spasticity following stroke in the internal carotid artery territory for Regional Stroke Centers in the Czech Republic. A secondary goal was to identify predictors for the development of spasticity. METHODS: In a prospective cohort study, 256 consecutive patients with clinical signs of central paresis due to a first-ever stroke were examined in the acute stage. All patients had primary stroke of carotid origin and paresis of the upper and/or lower limb for longer than 7 days after stroke onset. All were examined between 7-10 days after the stroke. We evaluated the degree and pattern of paresis, spasticity using the Modified Ashworth scale and the Barthel Index, baseline characteristics and demographic data. RESULTS: Of 256 patients (157 males; mean age 69.9±12.4 years), 115 (44.9%) patients developed spasticity during the first 10 days after stroke onset. Eighty-three (32.5%) patients presented with mild neurological deficit (modified Rankin Scale 0 - 2) and 69 (27.0%) patients were bedridden. CONCLUSION: Spasticity was noted in 44.9% patients with neurological deficit due to first-ever stroke in the carotid territory in the first 10 days after stroke onset. Severe spasticity was rare.

Physiotherapy in Parkinson's Disease: Building ParkinsonNet in Czechia.

OBJECTIVE: We conducted a questionnaire survey to investigate the availability and quality of physiotherapy (PT) for Parkinson's disease (PD). BACKGROUND: Despite evidence about the benefits of PT, there is no data regarding its use in Czechia. METHODS: Questionnaires were sent to 368 PD patients seen in a single movement disorders centre within two years (inclusion criteria: idiopathic PD, Hoehn and Yahr stage <5, and residence in Prague) and to 211 physical therapists (PTs) registered in Prague. The patient questionnaire evaluated limitations in 6 core areas and in activities of daily living and inquired about experience with PT. The PTs questionnaire evaluated knowledge about PD, number of PD patients treated yearly, and details of therapy. RESULTS: Questionnaires were returned by 248 patients and 157 PTs. PT was prescribed to 70/248 patients. The effects were satisfactory in 79% and lasted >3 months in 60/64. About half of the PTs have no experience with PD patients, 26% reported <3, and 5% see >10 yearly. The most widely used techniques were neurodevelopmental treatments. CONCLUSION: Present PD healthcare model in Czechia is suboptimal (low PT prescription, non-evidence-based PT). Implementation of European PT Guidelines for PD and the introduction of an efficient model of care are needed.