Heath management app use in Parkinson's disease and quality of life during the COVID-19 pandemic.

BACKGROUND: Social distancing during the COVID-19 pandemic affected follow-up visits and medication availability for patients with Parkinson's disease (PD). As a promising strategy to deal with these challenges, the implementation of health management smartphone apps was accelerated. However, whether more intense use of such apps could improve the quality of life (QoL) for PD patients during the COVID-19 pandemic was unknown. METHODS: Using a PD management app, this observational study assessed changes in QoL, as determined by PD Questionnaire 8 (PDQ-8), among PD patients before (Jan 20, 2019 to Oct 6, 2019) and after the beginning of the COVID-19 lockdown (Jan 20, 2020 to Oct 6, 2020). According to adherence to use of the app, participants were divided into low adherence, moderate adherence, and high adherence groups. A total of 4979 PD patients registered in the app, and 226 PD patients were enrolled, including 57 patients with low adherence, 112 with moderate adherence and 57 with high adherence. A generalized linear model was used to evaluate the change of PDQ-8 scores across these three different adherence groups. RESULTS: After the COVID-19 lockdown (1-year follow-up), the PDQ-8 scores are reduced by 0.8 (95% CI, 0.3-1.4) in all participants (P = 0.004). After adjustment for age, gender, education, disease duration and levodopa equivalent dose, PDQ-8 scores significantly less reduced in the high adherence group (0.3; 95% CI, 0.6-1.2) compared to the low adherence (1.9; 95% CI, 0.7-3.1) (P = 0.040) and moderate adherence groups (0.6; 95% CI, 0.2-1.3) (P = 0.012). CONCLUSIONS: A health management smartphone-based app might be a way to both measure and improve QoL among PD patients, provided that sufficient adherence is achieved.

The COVID-19 pandemic had an enormous impact on the lives of people living with Parkinson's disease (PD), given social distancing measures, and reduced access to healthcare. As a way to mitigate this, the use of health management apps was accelerated. However, there is a lack of studies on whether the use of such apps could over time affect the quality of life of people living with PD. Here, we analyzed changes in the quality of life of people living with PD using a health management app, before and after social distancing. We found that patients with high adherence to use of the app experienced a lower reduction of their quality of life. Using a health management smartphone app represents a novel approach that might help patients with PD improve their quality of life.

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.

COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel?

Several COVID-19 vaccines have recently been approved for emergency use according to governmental immunization programs. The arrival of these vaccines has created hope for people with Parkinson's disease (PD), as this can help to mitigate their risk of becoming infected with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), which can lead to serious, life-threatening disease, at least among those with more advanced PD. However, both persons with PD and physicians looking after these individuals have expressed concerns about the vaccine's efficacy and safety in the specific context of PD and its symptomatic treatment. Here, we discuss our perspective on these concerns, based on our interpretation of the literature plus the unfolding experience with widespread vaccination in the population at large. Because the benefits and risks of COVID-19 vaccines do not appear to be different than in the general population, we recommend COVID-19 vaccination with approved vaccines to persons with PD, unless there is a specific contraindication. Some caution seems warranted in very frail and terminally ill elderly persons with PD living in long-term care facilities.

Precompetitive Consensus Building to Facilitate the Use of Digital Health Technologies to Support Parkinson Disease Drug Development through Regulatory Science.

Innovative tools are urgently needed to accelerate the evaluation and subsequent approval of novel treatments that may slow, halt, or reverse the relentless progression of Parkinson disease (PD). Therapies that intervene early in the disease continuum are a priority for the many candidates in the drug development pipeline. There is a paucity of sensitive and objective, yet clinically interpretable, measures that can capture meaningful aspects of the disease. This poses a major challenge for the development of new therapies and is compounded by the considerable heterogeneity in clinical manifestations across patients and the fluctuating nature of many signs and symptoms of PD. Digital health technologies (DHT), such as smartphone applications, wearable sensors, and digital diaries, have the potential to address many of these gaps by enabling the objective, remote, and frequent measurement of PD signs and symptoms in natural living environments. The current climate of the COVID-19 pandemic creates a heightened sense of urgency for effective implementation of such strategies. In order for these technologies to be adopted in drug development studies, a regulatory-aligned consensus on best practices in implementing appropriate technologies, including the collection, processing, and interpretation of digital sensor data, is required. A growing number of collaborative initiatives are being launched to identify effective ways to advance the use of DHT in PD clinical trials. The Critical Path for Parkinson's Consortium of the Critical Path Institute is highlighted as a case example where stakeholders collectively engaged regulatory agencies on the effective use of DHT in PD clinical trials. Global regulatory agencies, including the US Food and Drug Administration and the European Medicines Agency, are encouraging the efficiencies of data-driven engagements through multistakeholder consortia. To this end, we review how the advancement of DHT can be most effectively achieved by aligning knowledge, expertise, and data sharing in ways that maximize efficiencies.

The Impact of the COVID-19 Pandemic on Psychological Distress, Physical Activity, and Symptom Severity in Parkinson's Disease.

BACKGROUND: The ongoing COVID-19 pandemic has many consequences for people with Parkinson's disease (PD). Social distancing measures complicate regular care and result in lifestyle changes, which may indirectly cause psychological stress and worsening of PD symptoms. OBJECTIVE: To assess whether the COVID-19 pandemic was associated with increased psychological distress and decreased physical activity in PD, how these changes related to PD motor and non-motor symptom severity, and what frequency and burden of COVID-related stressors were. METHODS: We sent an online survey to the Personalized Parkinson Project (PPP) cohort (n = 498 PD patients) in the Netherlands. In the survey, we distinguished between COVID-related stressor load, psychological distress, PD symptom severity, and physical activity. We related inter-individual differences to personality factors and clinical factors collected before the pandemic occurred. RESULTS: 358 PD patients completed the survey between April 21 and May 25, 2020 (response rate 71.9%). Patients with higher COVID-related stressor load experienced more PD symptoms, and this effect was mediated by the degree of psychological distress. 46.6% of PD patients were less physically active since the COVID-19 pandemic, and reduced physical activity correlated with worse PD symptoms. Symptoms that worsened most were rigidity, fatigue, tremor, pain and concentration. Presence of neuropsychiatric symptoms (anxiety, depression) before the pandemic, as well as cognitive dysfunction and several personality traits predicted increased psychological distress during the COVID-19 pandemic. CONCLUSION: Our findings show how an external stressor (the COVID-19 pandemic) leads to a worsening of PD symptoms by evoking psychological distress as well as lifestyle changes (reduced physical activity).

A New Day: The Role of Telemedicine in Reshaping Care for Persons With Movement Disorders.

The COVID-19 pandemic has demonstrated the fragility of clinic-based care for Parkinson's disease and other movement disorders. In response to the virus, many clinics across the world abruptly closed their doors to persons with Parkinson's disease. Fortunately, a niche care model, telemedicine-first described in this journal a generation ago-emerged as the dominant means of providing care. As we adjust to a new normal, we should focus future care not on clinics but on patients. Their needs, guided by clinicians, should determine how care is delivered, whether in the clinic, at home, remotely, or by some combination. Within this patient-centered approach, telemedicine is an attractive care option but not a complete replacement for in-person consultations, which are valuable for specific problems and for those who have access. Now that many clinicians and patients have gained exposure to telemedicine, we can better appreciate its advantages (eg, convenience) and disadvantages (eg, restricted examination). We can also create a new future that utilizes the Internet, video conferencing, smartphones, and sensors. This future will bring many clinicians to one patient, connect individual experts to countless patients, use widely available devices to facilitate diagnosis, and apply novel technologies to measure the disease in new ways. These approaches, which extend to education and research, enable a future where we can care for anyone anywhere and will help us stem the tide of Parkinson's disease. © 2020 International Parkinson and Movement Disorder Society.

Care, Convenience, Comfort, Confidentiality, and Contagion: The 5 C's that Will Shape the Future of Telemedicine.

The COVID-19 pandemic has driven rapid, widespread adoption of telemedicine. The distribution of clinicians, long travel distances, and disability all limit access to care, especially for persons with Parkinson's disease. Telemedicine is not a panacea for all of these challenges but does offer advantages. These advantages can be summarized as the 5 C's: accessible care, increased convenience, enhanced comfort, greater confidentiality to patients and families, and now reduced risk of contagion. Telemedicine also has its limitations, including the inability to perform parts of the physical examination and inequitable access to the Internet and related technologies. Future models will deliver care to patients from a diverse set of specialties. These will include mental health specialists, physiotherapists, neurosurgeons, speech-language therapists, dieticians, social workers, and exercise coaches. Along with these new care models, digital therapeutics, defined as treatments delivered through software programs, are emerging. Telemedicine is now being introduced as a bridge to restart clinical trials and will increasingly become a normal part of future research studies. From this pandemic will be a wealth of new telemedicine approaches which will fundamentally change and improve care as well as research for individuals with Parkinson's disease.