Exercise knowledge, barriers and motivators among LRRK2 G2019S mutation carriers.

INTRODUCTION: People with a Gly2019Ser mutation in the leucine-rich repeat kinase 2 (LRRK2 G2019S) are at increased risk of developing Parkinson's disease (PD). Recent evidence suggests that exercise may delay or prevent the development of clinically overt symptoms of PD in people at risk of PD. We determined whether LRRK2 G2019S mutation carriers with and without manifest PD are aware of the relationship between exercise and PD and how they differ in awareness, barriers and motivators to exercise. METHODS: We deployed a survey among 4422 LRRK2 G2019S mutation carriers. In total, 505 (11.4%) of them completed the survey, of whom 105 had self-reported manifest PD. RESULTS: Ninety-two percent of the LRRK2 G2019S mutation carriers with manifest PD and 63% of those with non-manifest PD were aware of the relationship between exercise and PD. Lack of motivation was the top barrier for those without manifest PD, while having an injury/disability was the most common barrier for those with manifest PD. Improvement of body functioning was the top motivator for both. CONCLUSION: The fact that many at-risk individuals are not aware of the importance of exercise and would exercise more with fewer barriers creates opportunities for trials using exercise as a possible prevention strategy for PD.

Design of the PERSPECTIVE study: PERsonalized SPEeCh Therapy for actIVE conversation in Parkinson's disease (randomized controlled trial).

OBJECTIVE: To evaluate the effectiveness of personalized and home-based speech therapy on quality of life, intelligibility, and social participation for people with Parkinson's disease (PD) who have a reduced intelligibility of speech. BACKGROUND: Speech problems in PD have a profound negative impact on social interaction and quality of life. Evidence for speech therapy in PD is growing, but more work remains needed to explore its full potential. Efficacy exists for highly intensive standardized speech treatment programs, but not all patients can comply with this rather intense intervention, especially the more severely affected ones. Here, we aim to study the effectiveness of personalized and home-based (remote) speech therapy in PD on quality of life and speech. The intervention will be supported by a dedicated speech training app. We expect that this approach will improve speech intelligibility and quality of life in patients irrespective of disease stage. METHODS: We will perform a single blind, randomized controlled trial, comparing 8 weeks of speech therapy to no intervention using a waiting list design. A total of 215 PD patients with problems in intelligibility will be recruited by 12 highly experienced speech therapists. All patients will be measured at baseline and after 8 weeks (primary endpoint). Additionally, the experimental group will be re-assessed one more time, after a wash-out period of 24 weeks. The control group will receive deferred treatment after 8 weeks, but without additional follow-up assessments. Our primary outcome is quality of life (as measured with PDQ-39). Secondary outcomes include speech and voice quality, intelligibility, severity of voice and speech complaints, and caregiver burden. RESULTS: The inclusion of participants has started on March 1, 2019, and is expected to be finalized on April 1, 2021. We expect to have the first results in January 2022. CONCLUSIONS: We will investigate the effectiveness of speech therapy in PD. Particular strengths of our study include a randomized and single-blinded design, the personalized treatment approach, the inclusion of PD patients irrespective of disease stage or severity of the speech complaint, the long-term follow-up, the adequate power, and the use of a patient-relevant primary endpoint. This will allow us to draw firm conclusions about the effectiveness of personalized and remote speech therapy for PD patients in all disease stages. TRIAL REGISTRATION: ClinicalTrials.gov NCT03963388 . Registered on May 24, 2019.

Exploring the Parkinson patients' perspective on home-based video recording for movement analysis: a qualitative study.

BACKGROUND: Parkinson's disease is a complex neurological disorder characterized by a variety of motor- as well as non-motor symptoms. Video-based technology (using continuous home monitoring) may bridge the gap between the fragmented in-clinic observations and the need for a comprehensive understanding of the progression and fluctuation of disease symptoms. However, continuous monitoring can be intrusive, raising questions about feasibility as well as potential privacy violation. METHODS: We used a grounded theory approach in which we performed semi-structured interviews to explore the opinion of Parkinson's patients on home-based video recording used for vision-based movement analysis. RESULTS: Saturation was reached after sixteen interviews. Three first-level themes were identified that specify the conditions required to perform continuous video monitoring: Camera recording (e.g. being able to turn off the camera), privacy protection (e.g. patient's behaviour, patient's consent, camera location) and perceived motivation (e.g. contributing to science or clinical practice). CONCLUSION: Our findings show that Parkinson patients' perception of continuous, home-based video recording is positive, when a number of requirements are taken into account. This knowledge will enable us to start using this technology in future research and clinical practice in order to better understand the disease and to objectify outcomes in the patients' own homes.

Professional occupation and the risk of Parkinson's disease.

BACKGROUND AND PURPOSE: Creativity in Parkinson's disease (PD) is strongly related to dopaminergic activity and medication. We hypothesized that patients with PD, including those who are in the pre-diagnostic phase of PD, are prone to choose highly structured 'conventional' professional occupations and avoid highly creative 'artistic' occupations. METHODS: At baseline of the population-based Rotterdam Study, we asked 12 147 individuals aged ≥45 years about their latest occupation and categorized occupations according to the RIASEC model. Participants underwent baseline and follow-up (median 11 years) examinations for PD. We determined associations of artistic (versus any other occupation) and conventional (versus any other occupation) occupations with PD. Additionally, we pooled our results with a recently published case-control study (Radboud Study). RESULTS: At baseline, conventional occupations were common [n = 4356 (36%)], whereas artistic occupations were rare [n = 137 (1%)]. There were 217 patients with PD, including 91 with prevalent PD and 126 with incident PD. The risk of PD varied substantially across occupational categories (chi-square, 14.61; P = 0.01). The penalized odds ratio (OR) of artistic occupations for PD was 0.19 [95% confidence interval (CI), 0.00-1.31; P = 0.11], whereas the OR of conventional occupations for PD was 1.23 (95% CI, 0.95-1.66; P = 0.10). The direction and magnitude of ORs were similar in cross-sectional and longitudinal subsamples. Pooled ORs across the Rotterdam and Radboud Studies were 0.20 (95% CI, 0.08-0.52; P < 0.001) for artistic and 1.23 (95% CI, 0.92-1.67; P = 0.08) for conventional occupations. CONCLUSIONS: The risk of PD varies substantially by choice of professional occupation. Our findings suggest that dopaminergic degeneration affects choice of occupation, which may start in the pre-diagnostic phase of PD.

Promising non-pharmacological therapies in PD: Targeting late stage disease and the role of computer based cognitive training.

Non-pharmacological interventions are increasingly being acknowledged as valuable treatment options to overcome or reduce functional problems in patients with Parkinson's disease (PD). There is a wide range of such non-pharmacological treatments for which the supportive evidence is emerging. Physiotherapy is one good example in this domain. However, there are also several promising non-pharmacological treatment strategies that have thus far received less research attention. Here, we describe two relatively new, but encouraging approaches. First, we focus on a hitherto largely overseen subgroup of PD, namely those with late-stage disease, a population that is often excluded from clinical studies. Importantly, the aims and therapeutic strategies in late-stage PD differ considerably from those in early-stage PD, and an emphasis on non-pharmacological management is particularly important for this vulnerable subgroup. Second, we focus on computer-based cognitive training, as an example of a relatively new intervention that includes innovative elements such as personalized training, artificial intelligence, and virtual reality. We review the latest evidence, practical considerations and future research perspectives, both for non-pharmacological approaches in late-stage PD and for computer-based cognitive training.

Effects of physical exercise therapy on mobility, physical functioning, physical activity and quality of life in community-dwelling older adults with impaired mobility, physical disability and/or multi-morbidity: a meta-analysis.

This is the first meta-analysis focusing on elderly patients with mobility problems, physical disability and/or multi-morbidity. The aim of this study is to assess the effect of physical exercise therapy on mobility, physical functioning, physical activity and quality of life. A broad systematic literature search was performed in the databases PubMed, CINAHL, Embase, PEDro and The Cochrane Library. Relevant study characteristics were reviewed and meta-analyses using standardized mean differences (SMDs) were performed. The results show that physical exercise therapy has a positive effect on mobility (SMD final value: 0.18; 95% CI: 0.05, 0.30; SMD change value: 0.82; 95% CI: 0.54, 1.10) and physical functioning (SMD final value: 0.27; 95% CI: 0.08, 0.46; SMD change value: 2.93; 95% CI: 2.50, 3.36). High-intensity exercise interventions seem to be somewhat more effective in improving physical functioning than low-intensity exercise interventions (SMD final value: 0.22; 95% CI: -0.17, 0.62; SMD change value: 0.38; 95% CI: -0.48, 1.25). These positive effects are of great value for older adults who are already physically impaired. The effect on physical activity and quality of life was not evident and no definite conclusions on the most effective type of physical exercise therapy intervention can be drawn.

Outcome instruments to measure frailty: a systematic review.

Frailty is one of the greatest challenges for healthcare professionals. The level of frailty depends on several interrelated factors and can change over time while different interventions seem to be able to influence the level of frailty. Therefore, an outcome instrument to measure frailty with sound clinimetric properties is needed. A systematic review on evaluative measures of frailty was performed in the databases PubMed, EMBASE, Cinahl and Cochrane. The results show numerous instruments that measure the level of frailty. This article gives a clear overview of the content of these frailty instruments and describes their clinimetric properties. Frailty instruments, however, are often developed as prognostic instruments and have also been validated as such. The clinimetric properties of these instruments as evaluative outcome measures are unclear.