Josefa Domingos

A systematic review of the characteristics and validity of monitoring technologies to assess Parkinson’s disease

BackgroundThere is growing interest in having objective assessment of health-related outcomes using technology-based devices that provide unbiased measurements which can be used in clinical practice and scientific research. Many studies have investigated the clinical manifestations of Parkinson’s disease using such devices. However, clinimetric properties and clinical validation vary among the different devices.MethodsGiven such heterogeneity, we sought to perform a systematic review in order to (i) list, (ii) compare and (iii) classify technological-based devices used to measure motor function in individuals with Parkinsons disease into three groups, namely wearable, non-wearable and hybrid devices. A systematic literature search of the PubMed database resulted in the inclusion of 168 studies. These studies were grouped based on the type of device used. For each device we reviewed availability, use, reliability, validity, and sensitivity to change. The devices were then classified as (i) ‘recommended’, (ii) ‘suggested’ or (iii) ‘listed’ based on the following criteria: (1) used in the assessment of Parkinson’s disease (yes/no), (2) used in published studies by people other than the developers (yes/no), and (3) successful clinimetric testing (yes/no).ResultsSeventy-three devices were identified, 22 were wearable, 38 were non-wearable, and 13 were hybrid devices. In accordance with our classification method, 9 devices were ‘recommended’, 34 devices were ‘suggested’, and 30 devices were classified as ‘listed’. Within the wearable devices group, the Mobility Lab sensors from Ambulatory Parkinson’s Disease Monitoring (APDM), Physilog®, StepWatch 3, TriTrac RT3 Triaxial accelerometer, McRoberts DynaPort, and Axivity (AX3) were classified as ‘recommended’. Within the non-wearable devices group, the Nintendo Wii Balance Board and GAITRite® gait analysis system were classified as ‘recommended’. Within the hybrid devices group only the Kinesia® system was classified as ‘recommended’.

New methods for the assessment of Parkinson's disease (2005 to 2015): A systematic review.

The past decade has witnessed a highly dynamic and growing expansion of novel methods aimed at improving the assessment of Parkinsons disease with technology (NAM‐PD) in laboratory, clinical, and home environments. However, the current state of NAM‐PD regarding their maturity, feasibility, and usefulness in assessing the main PD features has not been systematically evaluated.

Clinical Parameters and Tools for Home-Based Assessment of Parkinson's Disease: Results from a Delphi study

BACKGROUND Parkinsons disease (PD) is a neurodegenerative disorder with fluctuating symptoms. To aid the development of a system to evaluate people with PD (PwP) at home (SENSE-PARK system) there was a need to define parameters and tools to be applied in the assessment of 6 domains: gait, bradykinesia/hypokinesia, tremor, sleep, balance and cognition. OBJECTIVE To identify relevant parameters and assessment tools of the 6 domains, from the perspective of PwP, caregivers and movement disorders specialists. METHODS A 2-round Delphi study was conducted to select a core of parameters and assessment tools to be applied. This process included PwP, caregivers and movement disorders specialists. RESULTS Two hundred and thirty-three PwP, caregivers and physicians completed the first round questionnaire, and 50 the second. Results allowed the identification of parameters and assessment tools to be added to the SENSE-PARK system. The most consensual parameters were: Falls and Near Falls; Capability to Perform Activities of Daily Living; Interference with Activities of Daily Living; Capability to Process Tasks; and Capability to Recall and Retrieve Information. The most cited assessment strategies included Walkers; the Evaluation of Performance Doing Fine Motor Movements; Capability to Eat; Assessment of Sleep Quality; Identification of Circumstances and Triggers for Loose of Balance and Memory Assessment. CONCLUSIONS An agreed set of measuring parameters, tests, tools and devices was achieved to be part of a system to evaluate PwP at home. A pattern of different perspectives was identified for each stakeholder.

Participatory Design in Parkinson's Research with Focus on the Symptomatic Domains to be Measured

BACKGROUND There is a growing interest in the objective assessment of health related outcomes using technology providing quality measurements to be applied not only in daily clinical practice, but also in scientific research. Differences in the understandings of the condition and the terminology used between people with Parkinsons (PwPs), clinicians and technical developers may influence the progress of a participatory design process. OBJECTIVE This paper reports on a participatory design process to achieve a consensus among PwPs, clinicians and technologists over the selection of a set of symptomatic domains to be continuously assessed, in order to provide results relevant to both PwPs and clinicians. METHODS The methods used were a Web based user survey, end-user focus groups, ranking by combined methods, a Delphi process performed among clinicians and scientists, and prioritization of the results in a concertation workshop for PwPs, clinicians and technologists. RESULTS The following symptomatic domains were commonly agreed by PwPs and clinicians to be of central importance in a system of continuous assessment: hypokinesia/bradykinesia, tremor, sway, gait, sleep and cognition. This list satisfied both the needs of the PwPs and the concerns of the clinicians regarding the means of advancing new strategies in assessment and interventions in PD. CONCLUSIONS A participatory design strategy allowed the definition of a consensual list of symptomatic domains. Both the strategy and the achieved results may be of relevance for similar interdisciplinary approaches in the field of PD using a participatory design involving patients, clinicians and technologists.

Cognitive Impairment in Fall-Related Studies in Parkinson’s Disease

Abstract Background: There is increasing evidence to suggest a tight relationship between cognitive impairment and falls in Parkinson’s disease (PD). Here, we draw attention to a potentially significant flaw in the existent falls-related research, namely the apparent exclusion of patients with cognitive impairment or dementia. Objective: Our objective was to review all published, on-going or scheduled fall-related intervention studies, in order to investigate the extent to which cognitively impaired individuals with PD were included in these studies. Methods: We analyzed published controlled trials regarding falls and PD in commonly used databases, as well as relevant ongoing clinical trials registered within the World Health Organization database, clinicaltrials.gov and the European Clinical Trials Database. Results: Fourteen of the fifteen published studies included had explicit cognitive exclusion criteria as part of their study protocol. Most of the 54 on-going PD fall-related studies excluded patients with cognitive impairment. Conclusions: This suggests that individuals with cognitive impairment or dementia are excluded from fall-related research studies. We strongly recommend that future work in this area should include a representative sample of patients with PD, including subjects with cognitive decline.

Referral to rehabilitation in Parkinson's disease: who, when and to what end?

The current state of evidence in non-pharmacological treatments amounts to an impending paradigm shift in neurology where physicians should be alerted that some rehabilitation interventions are already supported in current therapeutic guidelines. This manuscript aims to overview the best scientific data supporting referral to rehabilitation services in order to help physicians make the best use of the existing evidence for non-pharmacological treatments in the different stages of Parkinsons disease.

Patient-driven N-of-1 in Parkinson’s Disease

Summary Background: New insights and knowledge in biomedical science often come from observation and experimentation. Methods traditionally used include self-experimentation, case reports, randomised controlled trials, and N-of-1 studies. Technological advances have lead to an increasing number of individuals and patients engaging in self-tracking. We use the term patient-driven N-of-1 for self-tracking performed with the explicit intention to disseminate the results by academic publishing. Objectives: The aim of the study was to: 1) explore the potential role for patient-driven N-of-1 studies as a tool for improving self-management in Parkinson’s disease (PD) using the example of managing levodopa-induced dyskinesia (LID) with nicotine, and 2) based on this example; identify some specific challenges of patient-driven N-of-1 studies. Methods: We used a placebo controlled patient-driven N-of-1 study with nicotine administered via e-cigarette to treat LID. The first author initiated and conducted the experiment on herself and noted her observations. The evaluations of the potential of N-of-1 for improving self-management of PD as well as the effects of nicotine on dyskinesia were based on the perception of the subject. During the planning and undertaking of the experiment, notes were made to identify challenges specific to patient-driven N-of-1 studies. Results: The subject was able to distinguish a decrease of her LID from nicotine but no effect from placebo. The main challenges of patient-driven N-of-1 studies were identified to be associated with planning of the study, recruiting a suitable research team, making sure the data collection is optimal, analysis of data, and publication of results. Conclusions: Our study indicates that nicotine administered via e-cigarette may have an effect on levodopa-induced dyskinesia in individual patients with PD. The main contribution is however highlighting the work done by patients on a daily basis for understanding their conditions and conducting self-tracking experiments. More work is needed to further develop methods around patient-driven N-of-1 studies for PD.

Disability in Activities of Daily Living and Severity of Dyskinesias Determine the Handicap of Parkinson’s Disease Patients in Advanced Stage Selected to DBS

BACKGROUND There is scarce data on the level of handicap in Parkinsons disease (PD) and none in advanced stage PD. OBJECTIVE To assess the handicap in advanced stage PD patients with disabling levodopa-induced motor complications selected to deep brain stimulation (DBS). METHODS Data was prospectively recorded during routine evaluation for DBS. Handicap was measured using London Handicap Scale (LHS) (0 = maximal handicap; 1 = no handicap). Disease severity was evaluated using the Hoehn & Yahr scale and the UPDRS/MDS-UPDRS, during off and on after a supra-maximal dose of levodopa. Schwab and England Scale (S&E) was scored in off and on. Dyskinesias were scored using the modified Abnormal Involuntary Movement Scale (mAIMS). Results concern cross-sectional assessment before DBS. RESULTS 100 PD patients (mean age 61 (±7.6); mean disease duration 12.20 (±4.6) years) were included. Median score of motor MDS-UPDRS was 54 in off and 25 in on. Mean total LHS score was 0.56 (±0.14). Patients were handicapped in several domains with a wide range of severity. Physical Independence and Social Integration were the most affected domains. Determinants of total LHS score were MDS-UPDRS part II off (β= -0.271; p = 0.020), S&E on (β= 0.264; p = 0.005) and off (β= 0.226; p = 0.020), and mAIMS on (β= -0.183; p = 0.042) scores (R2  = 29.6%). CONCLUSIONS We were able to use handicap to measure overall health condition in advanced stage PD. Patients were moderately to highly handicapped and this was strongly determined by disability in ADL and dyskinesias. Change in handicap may be a good patient-centred outcome to assess efficiency of DBS.

Feasibility of using risk prompts to prevent falls, dehydration and pulmonary aspiration in nursing homes: a clinical study protocol

BackgroundEvidence has shown a relationship between dehydration, falls, and pulmonary aspiration among older adults in nursing homes, all of which contribute to loss of independence and quality of life. It is believed that improving communication among healthcare professionals in nursing homes (physicians, nurses, rehabilitation team, psychologist, social workers, dieticians and medical assistants) decreases the number of adverse events in institutionalized patients. This study will evaluate the feasibility of using a set of written signs, designed to caution against the risk of falls, dehydration, and pulmonary aspiration, and will enable the proposal of tailored interventions to manage these events in nursing homes.Methods/DesignAll patients from Campus Neurológico Sénior (CNS) nursing home, at risk of falls and/ordysphagia and/or dehydration will be invited to participate in the study. Patients will undertake a screeningrisk assessment and the corresponding risk prompts will be attributed. Study duration will be a minimum ofthree months per participant, including daily record of falls, dehydration and pulmonary aspiration eventsand monthly interview assessments, conducted by a member of the research team. Data of the events that occur will be compared with historical data extracted retrospectively from medical and nursing charts. This study has been approved by the Ethics Committee of the Medical Academic Center of Lisbon, Faculty of Medicine, University of Lisbon (Ref. 176/15). All participants will give their written informed consent before entering the study.DiscussionThis study is unique in evaluating the feasibility of a communication system in preventing the three major risks in nursing home. Thoughtful selection and display of proper risk prompts in nursing homes could be an essential step along a path toward efficient communication of risks among healthcare teams. We expect that the displays will be easily applicable given their simplicity, low complexity, and minimal physical requirements.Trial registrationNCT03123601. March 7, 2017. Retrospectively registered.

Proliferation of community exercise programs with limited evidence and expertise: Safety implications: Proliferation of community exercise programs

A number of research studies underscore the beneficial effects that physiotherapy and exercise can have on functional activities involving gait, transfers, and balance in Parkinson’s disease (PD). People with Parkinson’s (PwP) can receive this care in a range of settings from various professionals. Evidence is emerging that supports a number of community programs for PwP that incorporate different nonconventional types of group exercises, including dance, boxing, Nordic walking, tai chi, and aquatic exercise. There are reasons to be optimistic that these new initiatives may be a long-term cost-effective and easily accessible care strategy for ongoing exercise for PwP. However, data regarding their true benefits and the best approaches to implementation are still limited. Notably, there is an optimal minimal level of disease-specific expertise necessary, particularly with respect to safely integrating exercises and reducing the risk of falls and other possible safety issues. By prematurely referring PwP to exercise approaches that do not have robust evidence and are led by instructors with a lack of professional expertise, health professionals may favor unnecessary procedures, foster unrealistic expectations in PwP (particularly those with less favorable profiles), and could ultimately be putting patients at risk of falls and/or injury. As such, several important questions regarding the specificity to PD and safety issues are now arising that should fuel future research. First, should we obtain more evidence about these community exercise programs and then implement them within the community setting, or should we start these programs first, even if little evidence is available? Second, taking into account the financial considerations, accessibility, and safety issues and the progressive nature of the disease, who should implement such community programs? Should physiotherapists incorporate boxing, dance, or tai chi into to their clinical practice? Or would it be more feasible while equally effective to train exercise instructors who teach community programs? Safe evidence-based practices must be a priority for care in all settings, including the community. Several courses of action may be needed to address the gap between expertise, evidence, its dissemination, and its implementation into community exercise practices. Programs must be made available and accessible to PwP by reducing critical financial and travel barriers. If evidencebased practices are not covered or are inaccessible, they will simply not be used. Even if PwP may have limited access to evidenced-based care, that care, when delivered, should be delivered by instructors with PD expertise. It is critical to enhance expertise among professionals who deliver these exercise programs through specific training, adequate ongoing educational support, and continuous contact with PwP. In addition, we also need to enhance public and PwP awareness of evidence-based exercise programs and their locations. Increasing public interest in community exercise programs may also potentially positively influence the direction of clinical research and advance clinical practice. All these actions can begin to guide us away from care disparities and promote better care for PwP. Without them, no amount of evidence will matter.