Usability and utility of a remote monitoring system to support physiotherapy for people with Parkinson's disease

BackgroundPhysiotherapy for persons with Parkinson's disease (PwPD) could benefit from objective and continuous tracking of physical activity and falls in daily life.ObjectivesWe designed a remote monitoring system for this purpose and describe the experiences of PwPD and physiotherapists who used the system in daily clinical practice.MethodsTwenty-one PwPD (15 men) wore a sensor necklace to passively record physical activity and falls for 6 weeks. They also used a smartphone app to self-report daily activities, (near-)falls and medication intake. They discussed those data with their PD-specialized physiotherapist (n = 9) during three regular treatment sessions. User experiences and aspects to be improved were gathered through interviews with PwPD and physiotherapists, resulting in system updates. The system was evaluated in a second pilot with 25 new PwPD (17 men) and eight physiotherapists.ResultsWe applied thematic analysis to the interview data resulting in two main themes: usability and utility. First, the usability of the system was rated positively, with the necklace being easy to use. However, some PwPD with limited digital literacy or cognitive impairments found the app unclear. Second, the perceived utility of the system varied among PwPD. While many PwPD were motivated to increase their activity level, others were not additionally motivated because they perceived their activity level as high. Physiotherapists appreciated the objective recording of physical activity at home and used the monitoring of falls to enlarge awareness of the importance of falls for PwPD. Based on the interview data of all participants, we drafted three user profiles for PwPD regarding the benefits of remote monitoring for physiotherapy: for profile 1, a monitoring system could act as a flagging dashboard to signal the need for renewed treatment; for profile 2, a monitoring system could be a motivational tool to maintain physical activity; for profile 3, a monitoring system could passively track physical activity and falls at home. Finally, for a subgroup of PwPD the burdens of monitoring will outweigh the benefits.ConclusionsOverall, both PwPD and physiotherapists underline the potential of a remote monitoring system to support physiotherapy by targeting physical activity and (near-)falls. Our findings emphasize the importance of personalization in remote monitoring technology, as illustrated by our user profiles

Medicalization Defined in Empirical Contexts – A Scoping Review

Background: Medicalization has been a topic of discussion and research for over four decades. It is a known concept to researchers from a broad range of disciplines. Medicalization appears to be a concept that speaks to all, suggesting a shared understanding of what it constitutes. However, conceptually, the definition of medicalization has evolved over time. It is unknown how the concept is applied in empirical research, therefore following research question was answered: How is medicalization defined in empirical research and how do the definitions differ from each other? Methods: We performed a scoping review on the empirical research on medicalization. The 5 steps of a scoping review were followed: (1) Identifying the research question; (2) Identifying relevant studies; (3) Inclusion and exclusion criteria; (4) Charting the data; and (5) Collating, summarizing and reporting the results. The screening of 3027 papers resulted in the inclusion of 50 empirical studies in the review.Results: The application of the concept of medicalization within empirical studies proved quite diverse. The used conceptual definitions could be divided into 10 categories, which differed from each other subtly though importantly. The ten categories could be placed in a framework, containing two axes. The one axe represents a continuum from value neutral definitions to value laden definitions. The other axe represents a continuum from a micro to a macro perspective on medicalization. Conclusion: This review shows that empirical research on medicalization is quite heterogeneous in its definition of the concept. This reveals the richness and complexity of medicalization, once more, but also hinders the comparability of studies. Future empirical research should pay more attention to the choice made with regard to the definition of medialization and its applicability to the context of the study

Real-Life Gait Performance as a Digital Biomarker for Motor Fluctuations: The Parkinson@Home Validation Study

Background: Wearable sensors have been used successfully to characterize bradykinetic gait in patients with Parkinson disease (PD), but most studies to date have been conducted in highly controlled laboratory environments. Objective: This paper aims to assess whether sensor-based analysis of real-life gait can be used to objectively and remotely monitor motor fluctuations in PD. Methods: The Parkinson@Home validation study provides a new reference data set for the development of digital biomarkers to monitor persons with PD in daily life. Specifically, a group of 25 patients with PD with motor fluctuations and 25 age-matched controls performed unscripted daily activities in and around their homes for at least one hour while being recorded on video. Patients with PD did this twice: once after overnight withdrawal of dopaminergic medication and again 1 hour after medication intake. Participants wore sensors on both wrists and ankles, on the lower back, and in the front pants pocket, capturing movement and contextual data. Gait segments of 25 seconds were extracted from accelerometer signals based on manual video annotations. The power spectral density of each segment and device was estimated using Welch’s method, from which the total power in the 0.5- to 10-Hz band, width of the dominant frequency, and cadence were derived. The ability to discriminate between before and after medication intake and between patients with PD and controls was evaluated using leave-one-subject-out nested cross-validation. Results: From 18 patients with PD (11 men; median age 65 years) and 24 controls (13 men; median age 68 years), ≥10 gait segments were available. Using logistic LASSO (least absolute shrinkage and selection operator) regression, we classified whether the unscripted gait segments occurred before or after medication intake, with mean area under the receiver operator curves (AUCs) varying between 0.70 (ankle of least affected side, 95% CI 0.60-0.81) and 0.82 (ankle of most affected side, 95% CI 0.72-0.92) across sensor locations. Combining all sensor locations did not significantly improve classification (AUC 0.84, 95% CI 0.75-0.93). Of all signal properties, the total power in the 0.5- to 10-Hz band was most responsive to dopaminergic medication. Discriminating between patients with PD and controls was generally more difficult (AUC of all sensor locations combined: 0.76, 95% CI 0.62-0.90). The video recordings revealed that the positioning of the hands during real-life gait had a substantial impact on the power spectral density of both the wrist and pants pocket sensor. Conclusions: We present a new video-referenced data set that includes unscripted activities in and around the participants’ homes. Using this data set, we show the feasibility of using sensor-based analysis of real-life gait to monitor motor fluctuations with a single sensor location. Future work may assess the value of contextual sensors to control for real-world confounders

Current status and future prospects for shared decision making before and after total knee replacement surgery—a scoping review

Background. To gain insight into the current state-of-the-art of shared decision making (SDM) during decisions related to pre and postoperative care process regarding primary total knee replacement (TKR). Methods. A scoping review was performed to synthesize existing scientific research regarding (1) decisional needs and preferences of patients preparing for, undergoing and recovering from TKR surgery, (2) the relation between TKR decision-support interventions and SDM elements (i.e., team talk, option talk, and decision talk), (3) the extent to which TKR decision-support interventions address patients’ decisional needs and preferences. Results. 2526 articles were identified, of which 17 articles met the inclusion criteria. Of the 17 articles, ten had a qualitative study design and seven had a quantitative study design. All included articles focused on the decision whether to undergo TKR surgery or not. Ten articles (all qualitative) examined patients’ decisional needs and preferences. From these, we identified four domains that affected the patients’ decision to undergo TKR: (1) personal factors, (2) external factors, (3) information sources and (4) preferences towards outcome prediction. Seven studies (5) randomized controlled trials and 2 cohort studies) used quantitative analyses to probe the effect of decision aids on SDM and/or clinical outcomes. In general, existing decision aids did not appear to be tailored to patient needs and preferences, nor were the principles of SDM well-articulated in the design of decision aids. Conclusions. SDM in TKR care is understudied; existing research appears to be narrow in scope with limited relevance to established SDM principles and the decisional needs of patients undertaking TKR surgery

Perspectives of people living with Parkinson's disease on personalized prediction models

Abstract Background There is a great need for the development of personalized prediction models (PPMs) that can predict the rate of disease progression for persons with Parkinson's disease (PD), based on their individual characteristics. In this study, we aimed to clarify the perspective of persons diagnosed with PD on the value of such hypothetical PPMs. Methods We organized four focus group discussions, each including five persons with PD who were diagnosed within the last 5 years. The sessions focused on what they think of receiving a personalized prediction; what outcomes are important to them; if and how the possibility of influencing the prognosis would change the way they think of personalized predictions; how they deal with the uncertainty from a PPM; and what barriers and facilitators they expect for using a PPM. Results The wish of persons with PD for receiving personalized prognostic information was highly heterogenous, for various reasons. Most persons with PD would like to receive more personalized prognostic information, mainly to better prepare themselves and their loved ones for the future. The prediction provided should be as personalized as possible, and there should be adequate supervision and coaching by a professional when providing the information. They were particularly interested in receiving prognostic information when their interventions would be available that could subsequently influence the identified prognostic factor and thereby affect the disease course beneficially. Conclusion Most persons with PD in this study want more insight into their own future by means of prediction models, provided that this is explained and supervized properly by professionals. Patient or Public Contribution Two patient‐researchers were involved in the study design, conduct of the study, interpretation of the data and in preparation of the manuscript

Blue Light Therapy Glasses in Parkinson's Disease:Patients' Experience

Contains fulltext : 208972.pdf (publisher's version ) (Open Access)Background: Blue light glasses have been introduced as a possible new treatment option to treat sleep disturbances in patients with Parkinson disease (PD). Assessing patient attitudes represents a key step in the road towards formal testing and introduction into clinical practice. Specifically, we aimed to assess how patients experience the use of blue light glasses, aiming to optimise compliance in upcoming clinical trials where these glasses will be tested for efficacy. Methods: We invited 58 PD patients who had used the blue light glasses for at least one week on a daily basis to complete an online survey about their experiences and self-reported impact. For this purpose, the System Usability Scale was used, supplemented with additional questions about (side)effects. A total of 31 patients (53%) replied. Results: 74% of respondents reported subjective improvements in night-time sleep, daytime sleepiness, depressive symptoms, motor functioning, or a combination thereof. The median score for the System Usability Scale (SUS; 0-100 range, higher scores indicating better performance) was 70.0. A total of 26 patients (84%) had an overall positive attitude towards the technique, with patients rating the glasses with an average score of 6.9 +/- 2.0 (SD) out of 10. Except for one patient, all responders would like to continue using the glasses, mostly because they considered it a useful aid. Conclusion: Blue light therapy appears to have a positive effect on sleep, mood, and motor symptoms in PD. PD patients had an overall positive attitude towards blue light glasses as treatment for sleep disorders

Determinants of coping styles of people with Parkinson’s Disease

Abstract Little is known about how people with Parkinson’s disease (PD) cope with stressful life events. We examined the determinants of specific coping strategies and whether specific choices have any impact on quality of life (QoL). We recruited patients with PD who had been seen at a neurology outpatient clinic at least once during the past year as part of the PRIME-NL cohort study. Coping was measured using the Ways of Coping Questionnaire (WCQ) and QoL was measured using the Parkinson’s Disease Questionnaire (PDQ-39). 977 out of 988 participants completed the questionnaires and 935 participants were diagnosed with PD. Factor analysis was undertaken to test if ways of coping were similar or different to previous findings in a PD population. We used linear regression analyses to examine predictors of coping styles. We then used multivariable linear regression to test how coping style was associated with the domains of QoL conditional on potential confounders. The five coping styles identified by the factor analysis were: “taking action and emphasizing the positive”, “distancing and fantasizing”, “goal oriented and planful problem solving”, “seeking social support” and “avoidance and acceptance”. Age, gender, education and anxiety were associated with the type of coping strategy. For example, higher education was associated with more active coping strategies (e.g. β = 4.39, p < 0.001 for goal oriented). Conditional on other confounders, most coping strategies had little effect on QoL domains. These findings demonstrate that coping behavior of people with PD is influenced by psychological status and personal traits. However, there was only a modest effect of coping behavior on QoL. Future research needs to test whether the enhancement or discouragement of certain coping strategies is feasible and can enhance QoL

Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

Background: Parkinson's disease (PD) is a progressive neurodegenerative disease with motor- and non-motor symptoms. When the disease progresses, symptom burden increases. Consequently, additional care demands develop, the complexity of treatment increases, and the patient's quality of life is progressively threatened. To address these challenges, there is growing awareness of the potential benefits of palliative care for people with PD. This includes communication about end-of-life issues, such as Advance Care Planning (ACP), which helps to elicit patient's needs and preferences on issues related to future treatment and care. In this study, we will assess the impact and feasibility of a nurse-led palliative care intervention for people with PD across diverse European care settings. Methods: The intervention will be evaluated in a multicentre, open-label randomized controlled trial, with a parallel group design in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and United Kingdom). The “PD_Pal intervention” comprises (1) several consultations with a trained nurse who will perform ACP conversations and support care coordination and (2) use of a patient-directed “Parkinson Support Plan-workbook”. The primary endpoint is defined as the percentage of participants with documented ACP-decisions assessed at 6 months after baseline (t1). Secondary endpoints include patients' and family caregivers' quality of life, perceived care coordination, patients' symptom burden, and cost-effectiveness. In parallel, we will perform a process evaluation, to understand the feasibility of the intervention. Assessments are scheduled at baseline (t0), 6 months (t1), and 12 months (t2). Statistical analysis will be performed by means of Mantel–Haenszel methods and multilevel logistic regression models, correcting for multiple testing. Discussion: This study will contribute to the current knowledge gap on the application of palliative care interventions for people with Parkinson's disease aimed at ameliorating quality of life and managing end-of-life perspectives. Studying the impact and feasibility of the intervention in seven European countries, each with their own cultural and organisational characteristics, will allow us to create a broad perspective on palliative care interventions for people with Parkinson's disease across settings. Clinical Trial Registration: www.trialregister.nl, NL8180