Nienke M. de Vries’s research while affiliated with Radboud University Medical Centre (Radboudumc) and other places

Background Conventional medical management, while essential, cannot address all multifaceted consequences of Parkinson’s disease (PD). This pilot study explores the potential of a co-designed creative arts therapy on health-related quality of life, well-being, and pertinent non-motor symptoms. Methods We conducted an exploratory pilot study with a pre-post design using validated questionnaires. Eight individuals with PD participated in the program. The investigated intervention was a 10-week creative arts therapy with weekly 90–120-min sessions, guided by three creative therapists. Participants were allowed to autonomously select from multiple creative media based on their personal preferences. Explored co-primary outcomes included health-related quality of life (PDQ-39), well-being (ICECAP-A), anxiety/depression (HADS), executive functioning (BRIEF-A), resilience/mental flexibility (FIT-60), and self-efficacy (GSES). We used paired sample t tests for pre–post analysis of the co-primary outcomes and Wilcoxon signed-rank tests for PDQ-39 sub-scores. We also included aesthetic responsiveness (AReA) and healthcare consumption (IMCQ adapted for PD) questionnaires reported as descriptive statistics. Results The results showed a significant reduction in anxiety and an increase in well-being. We also observed a slight improvement in cognitive functioning. Finally, we noted a reduction in healthcare consumption (fewer visits at neurologists, specialized PD nurses, and allied healthcare professionals). Conclusion These findings cautiously suggest that our co-designed, multi-media creative arts therapy has the potential to increase well-being and reduce anxiety, while reducing healthcare consumption. These preliminary findings support the need for a larger, randomized controlled trial to explore the therapeutic potential of creative arts therapy in PD care.

Background and Purpose Physical activity has beneficial symptomatic effects for people with Parkinson’s disease (PD), but increasing—and sustaining—a physically active lifestyle remains challenging. We investigated the feasibility (ability to increase step counts) and usability of a behavioral intervention using a motivational smartphone application to remotely increase physical activity in PD. Methods We performed a 4-week, double-blind pilot trial. Thirty people with PD who were able to walk independently and did not take more than 7000 steps at baseline were randomized to minimal, moderate, or large increases in step counts. Step counts were continuously collected with the participants’ own smartphones. Usability was assessed with a translated version of the System Usability Scale. We reported the distribution of clinical characteristics in our participants. Results Step counts per day increased over 4 weeks in a dose-dependent pattern (mean ± standard deviation: minimal = 1064 ± 1030, moderate = 1689 ± 2060, large = 2745 ± 3817). The usability of the STEPWISE app (System Usability Scale) was perceived as excellent (mean ± standard deviation: 86.6 ± 12.7). Discussion and Conclusions Our findings support the notion that a titrated increase in daily step count is feasible over 4 weeks. This motivates and supports further development of a smartphone application to increase physical activity in people with manifest PD. If effective, this behavioral intervention could provide an accessible option for people with PD worldwide. Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content available at: http://links.lww.com/JNPT/A516).

In “Measuring Physical Functioning Using Wearable Sensors in Parkinson Disease and Chronic Obstructive Pulmonary Disease (the Accuracy of Digital Assessment of Performance Trial Study): Protocol for a Prospective Observational Study” (JMIR Res Protoc 2024 May 7:13:e55452) the authors noticed that one of the authors was not named correctly.

UNSTRUCTURED In “Measuring Physical Functioning Using Wearable Sensors in Parkinson Disease and Chronic Obstructive Pulmonary Disease (the Accuracy of Digital Assessment of Performance Trial Study): Protocol for a Prospective Observational Study” (JMIR Res Protoc 2024 May 7:13:e55452) the authors noticed that one of the authors was not named correctly.

Introduction: Orthostatic hypotension is common in people with Parkinson’s disease due to autonomic dysfunction and medication use, and can have a significant negative impact on quality of life. Pharmacological treatment is often complicated due to complex blood pressure regulation problems. This case report presents a patient whose symptoms of orthostatic intolerance were successfully treated with the non-pharmacological method of Head-Up Tilt Sleeping (HUTS). Case presentation: A 69-year-old man with Parkinson’s disease and prominent autonomic failure received recommendation from the neurologist to use HUTS to battle orthostatic intolerance, of which complaints were worst in the early morning. The patient noted a marked improvement of the orthostatic intolerance after a period in which he slowly step-by-step inclined the bed to an angle just over 10°. When ceasing HUTS for a brief period, complaints of orthostatic intolerance immediately returned and the patient returned to tilted sleeping right away. After a follow-up of three months the patient did not report orthostatic intolerance during a standing test. Conclusion: This case illuminates that, despite difficulties intrinsic to this method, whole-body head-up tilt sleeping can ameliorate orthostatic intolerance and improve the daily life of people with advanced movement disorders.

Background Increasing evidence supports the merits of speech therapy in Parkinson's disease, but the current practice of multiple in-house treatments is demanding for patients. We therefore assessed the effectiveness of remotely delivered and personalised speech therapy on improving quality of life and speech quality in persons with Parkinson's disease. Methods We performed a single blinded randomised controlled trial (the PERSPECTIVE study), comparing 8 weeks of personalised remote speech therapy to no intervention (waiting list design). Patients with reduced speech intelligibility were included, regardless of disease stage or dysarthria severity. Patients were assigned randomly (1:1) to the intervention or control group. Measurements took place at baseline and after 8 weeks (both groups), and after 32 weeks (intervention group only). Patients were treated remotely by 20 experienced speech therapists. The primary outcome was disease-related quality of life at 8 weeks, assessed with the Parkinson's Disease Questionnaire 39 (PDQ-39). Data were analysed using analysis of covariance based on the intention-to-treat principle. This trial is registered in ClinicalTrials.gov, NCT03963388. Findings Between March 1, 2019, and March 27, 2021, 214 patients were enrolled in the intervention group (n = 109) or control group (n = 105). At the primary timepoint, the adjusted mean difference in PDQ-39 was −2.0 in favour of the intervention group (95% CI −4.0 to 0.1); p = 0.056). The intervention group scored better on the communication index score of the PDQ-39 (post hoc analysis), with an adjusted mean difference of −5.3 (95% CI −9.4 to −1.2; p = 0.011). We found no between-group differences on any other PDQ-39 domain. Follow-up measurements showed a significant reduction of the PDQ-39 compared to the primary timepoint with a difference of 2.40 (95% CI 0.77–4.02; p = 0.004). Interpretation Personalised remote speech therapy improved communication-related quality of life, but not overall quality of life. Funding 10.13039/100000864Michael J. Fox Foundation, Gatsby Foundation, and 10.13039/100016036Health∼Holland.

Background An innovative, integrative care model for people with Parkinson (PRIME Parkinson) has gradually been implemented in a selected region of the Netherlands since 2021. A prospective evaluation of this model (PRIME-NL study) was initiated in parallel, spanning the year prior to implementation (baseline) and the implementation period. Following publication of the original study protocol, the COVID-19 crisis delayed implementation of the full PRIME Parkinson care model by two years and hampered the recruitment of study participants. Objective To describe which methodological adjustments were made to the study protocol because of these developments. Methods We compare various outcomes between a region where PRIME Parkinson care was implemented (innovation region) versus the rest of the Netherlands (usual care region). We use healthcare claims data of virtually all people with Parkinson in the Netherlands and annual questionnaires in a representative subsample of 984 people with Parkinson, 566 caregivers and 192 healthcare professionals. Four major methodological adjustments had to be made since publication of the original protocol. First, we extended the evaluation period by two years. Second, we incorporated annual process measures of the stage of implementation of the new care model. Third, we introduced a real-time iterative feedback loop of interim results to relevant stakeholders. Fourth, we updated the statistical analysis plan. Discussion This manuscript provides transparency in how the design and analyses of the evaluation study had to be adapted to control for external influences in a dynamic environment, including eruption of the COVID-19 crisis. Our solutions could serve as a template for evaluating other complex healthcare interventions in a dynamic environment.

Background Remote monitoring systems have the potential to measure symptoms and treatment effects in people with Parkinson's disease (PwP) in the home environment. However, information about user experience and long‐term compliance of such systems in a large group of PwP with relatively severe PD symptoms is lacking. Objective The aim was to gain insight into user experience and long‐term compliance of a smartwatch (to be worn 24/7) and an online dashboard to report falls and receive feedback of data. Methods We analyzed the data of the “Bringing Parkinson Care Back Home” study, a 1‐year observational cohort study in 200 PwP with a fall history. User experience, compliance, and reasons for noncompliance were described. Multiple Cox regression models were used to identify determinants of 1‐year compliance. Results We included 200 PwP (mean age: 69 years, 37% women), of whom 116 (58%) completed the 1‐year study. The main reasons for dropping out of the study were technical problems (61 of 118 reasons). Median wear time of the smartwatch was 17.5 h/day. The online dashboard was used by 77% of participants to report falls. Smartphone possession, shorter disease duration, more severe motor symptoms, and less‐severe freezing and balance problems, but not age and gender, were associated with a higher likelihood of 1‐year compliance. Conclusions The 1‐year compliance with this specific smartwatch was moderate, and the user experience was generally good, except battery life and data transfer. Future studies can build on these findings by incorporating a smartwatch that is less prone to technical issues.