Assessing the validity of a Parkinson's care evaluation: the PRIME-NL study.

INTRODUCTION: The PRIME-NL study prospectively evaluates a new integrated and personalized care model for people with parkinsonism, including Parkinson's disease, in a selected region (PRIME) in the Netherlands. We address the generalizability and sources of selection and confounding bias of the PRIME-NL study by examining baseline and 1-year compliance data. METHODS: First, we assessed regional baseline differences between the PRIME and the usual care (UC) region using healthcare claims data of almost all people with Parkinson's disease in the Netherlands (the source population). Second, we compared our questionnaire sample to the source population to determine generalizability. Third, we investigated sources of bias by comparing the PRIME and UC questionnaire sample on baseline characteristics and 1-year compliance. RESULTS: Baseline characteristics were similar in the PRIME (n = 1430) and UC (n = 26,250) source populations. The combined questionnaire sample (n = 920) was somewhat younger and had a slightly longer disease duration than the combined source population. Compared to the questionnaire sample in the PRIME region, the UC questionnaire sample was slightly younger, had better cognition, had a longer disease duration, had a higher educational attainment and consumed more alcohol. 1-year compliance of the questionnaire sample was higher in the UC region (96%) than in the PRIME region (92%). CONCLUSION: The generalizability of the PRIME-NL study seems to be good, yet we found evidence of some selection bias. This selection bias necessitates the use of advanced statistical methods for the final evaluation of PRIME-NL, such as inverse probability weighting or propensity score matching. The PRIME-NL study provides a unique window into the validity of a large-scale care evaluation for people with a chronic disease, in this case parkinsonism.

The state of telemedicine for persons with Parkinson's disease.

PURPOSE OF REVIEW: The COVID-pandemic has facilitated the implementation of telemedicine in both clinical practice and research. We highlight recent developments in three promising areas of telemedicine: teleconsultation, telemonitoring, and teletreatment. We illustrate this using Parkinson's disease as a model for other chronic neurological disorders. RECENT FINDINGS: Teleconsultations can reliably administer parts of the neurological examination remotely, but are typically not useful for establishing a reliable diagnosis. For follow-ups, teleconsultations can provide enhanced comfort and convenience to patients, and provide opportunities for blended and proactive care models. Barriers include technological challenges, limited clinician confidence, and a suboptimal clinician-patient relationship. Telemonitoring using wearable sensors and smartphone-based apps can support clinical decision-making, but we lack large-scale randomized controlled trials to prove effectiveness on clinical outcomes. Increasingly many trials are now incorporating telemonitoring as an exploratory outcome, but more work remains needed to demonstrate its clinical meaningfulness. Finding a balance between benefits and burdens for individual patients remains vital. Recent work emphasised the promise of various teletreatment solutions, such as remotely adjustable deep brain stimulation parameters, virtual reality enhanced exercise programs, and telephone-based cognitive behavioural therapy. Personal contact remains essential to ascertain adherence to teletreatment. SUMMARY: The availability of different telemedicine tools for remote consultation, monitoring, and treatment is increasing. Future research should establish whether telemedicine improves outcomes in routine clinical care, and further underpin its merits both as intervention and outcome in research settings.

Smartphone applications for Movement Disorders: Towards collaboration and re-use.

BACKGROUND: Numerous smartphone and tablet applications (apps) are available to monitor movement disorders, but an overview of their purpose and stage of development is missing. OBJECTIVES: To systematically review published literature and classify smartphone and tablet apps with objective measurement capabilities for the diagnosis, monitoring, assessment, or treatment of movement disorders. METHODS: We systematically searched for publications covering smartphone or tablet apps to monitor movement disorders until November 22nd, 2023. We reviewed the target population, measured domains, purpose, and technology readiness level (TRL) of the proposed app and checked their availability in common app stores. RESULTS: We identified 113 apps. Most apps were developed for Parkinson's disease specifically (n = 82; 73%) or for movement disorders in general (n = 17; 15%). Apps were either designed to momentarily assess symptoms (n = 65; 58%), support treatment (n = 22; 19%), aid in diagnosis (n = 16; 14%), or passively track symptoms (n = 11; 10%). Commonly assessed domains across movement disorders included fine motor skills (n = 34; 30%), gait (n = 36; 32%), and tremor (n = 32; 28%) for the motor domain and cognition (n = 16; 14%) for the non-motor domain. Twenty-six (23%) apps were proof-of-concepts (TRL 1-3), while most apps were tested in a controlled setting (TRL 4-6; n = 63; 56%). Twenty-four apps were tested in their target setting (TRL 7-9) of which 10 were accessible in common app stores or as Android Package. CONCLUSIONS: The development of apps strongly gravitates towards Parkinson's disease and a selection of motor symptoms. Collaboration, re-use and further development of existing apps is encouraged to avoid reinventions of the wheel.

Digital biomarkers for non-motor symptoms in Parkinson's disease: the state of the art.

Digital biomarkers that remotely monitor symptoms have the potential to revolutionize outcome assessments in future disease-modifying trials in Parkinson's disease (PD), by allowing objective and recurrent measurement of symptoms and signs collected in the participant's own living environment. This biomarker field is developing rapidly for assessing the motor features of PD, but the non-motor domain lags behind. Here, we systematically review and assess digital biomarkers under development for measuring non-motor symptoms of PD. We also consider relevant developments outside the PD field. We focus on technological readiness level and evaluate whether the identified digital non-motor biomarkers have potential for measuring disease progression, covering the spectrum from prodromal to advanced disease stages. Furthermore, we provide perspectives for future deployment of these biomarkers in trials. We found that various wearables show high promise for measuring autonomic function, constipation and sleep characteristics, including REM sleep behavior disorder. Biomarkers for neuropsychiatric symptoms are less well-developed, but show increasing accuracy in non-PD populations. Most biomarkers have not been validated for specific use in PD, and their sensitivity to capture disease progression remains untested for prodromal PD where the need for digital progression biomarkers is greatest. External validation in real-world environments and large longitudinal cohorts remains necessary for integrating non-motor biomarkers into research, and ultimately also into daily clinical practice.

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

Background: Physiotherapy for persons with Parkinson's disease (PwPD) could benefit from objective and continuous tracking of physical activity and falls in daily life. Objectives: We designed a remote monitoring system for this purpose and describe the experiences of PwPD and physiotherapists who used the system in daily clinical practice. Methods: Twenty-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. Results: We 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. Conclusions: Overall, 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.

Eye-Tracking Based Attention Bias Modification (ET-ABM) Facilitates Disengagement from Negative Stimuli in Dysphoric Individuals.

To address shortcomings of purely reaction-time based attention bias modification (ABM) paradigms, a novel eye-tracking based ABM training (ET-ABM) was developed. This training targets the late disengagement from negative stimuli and the lack of attention for positive information, which are characteristics of depression. In the present study, 75 dysphoric students (BDI ≥ 9) were randomly assigned to either this positive training (PT), or a sham-training (ST) that did not train any valence-specific gaze pattern (positive and negative pictures had to be disengaged from and attended to equally often). Results showed that the PT induced a positive attentional bias (longer fixations of positive than negative pictures). Although the ST group showed an increase in positive attentional bias as well, this increase was not as strong as in the PT group. Compared to the ST, the PT specifically induced faster disengagement from negative pictures. No differential training effects were found on stress responses or state rumination. These results show that the ET-ABM successfully modifies attentional processes, specifically late disengagement from negative stimuli, in dysphoric students, and hence might be a promising alternative to existing ABM paradigms.