Modernizing Daily Function Assessment in Parkinson's Disease Using Capacity, Perception, and Performance Measures.

Many disease symptoms restrict the quality of life of the affected. This usually occurs indirectly, at least in most neurological diseases. Here, impaired daily function is interposed between the symptoms and the reduced quality of life. This is reflected in the International Classification of Function, Disability and Health model published by the World Health Organization in 2001. This correlation between symptom, daily function, and quality of life makes it clear that to evaluate the success of a therapy and develop new therapies, daily function must also be evaluated as accurately as possible. However, daily function is a complex construct and therefore difficult to quantify. To date, daily function has been measured primarily by capacity (clinical assessments) and perception (surveys and patient-reported outcomes) assessment approaches. Now, daily function can be captured in a new dimension, that is, performance, through new digital technologies that can be used in the home environment of patients. This viewpoint discusses the differences and interdependencies of capacity, perception, and performance assessment types using the example of Parkinson's disease. Options regarding how future study protocols should be designed to get the most comprehensive and validated picture of daily function in patients are presented. © 2020 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

Autonomic Symptoms in Older Adults Are Common and Associated With Health-Related Quality of Life.

Background: Autonomic symptoms are common in older adults, and a large body of literature focusing on age-related diseases shows that autonomic symptoms in these diseases constrain Health-Related Quality of Life (HRQoL). To our best knowledge, the association between autonomic symptoms in older adults, independent of specific diseases, and HRQoL has not yet been assessed. Aim: To assess the frequency and the effect of autonomic symptoms in general, as well as orthostatic intolerance, vasomotor, secretomotor, gastrointestinal, bladder, and pupillomotor symptoms, on HRQoL in older adults. Methods: Cross-sectional data of the fourth visit of the Tübinger evaluation of Risk factors for Early detection of Neurodegeneration (TREND) study were included. Autonomic symptoms, as assessed with the Composite Autonomic Symptom Score 31 (COMPASS 31), were quantified and compared with HRQoL, as assessed with the EuroQol five-level version (EQ-5D-5L). Statistical analyses included Spearman's rank correlation and multiple linear regression analysis. Results: The analysis included 928 participants with a median of 68 years; 47% were women. Of those, 85% reported at least one autonomic symptom. Gastrointestinal and secretomotor symptoms were most common. The COMPASS 31 total score and all subdomains were significantly associated with reduced HRQoL. Among the subdomains, the strongest correlations with HRQoL were found for gastrointestinal and bladder symptoms. Overall, autonomic symptoms alone explained 20% of the variance of HRQoL; when depressive mood was added, the model explained 32%. Conclusion: Autonomic symptoms are associated with HRQoL and depressive symptoms in older adults.

The association between objectively measured physical activity, depression, cognition, and health-related quality of life in Parkinson's disease.

BACKGROUND: Lower levels of physical activity are associated with lower Health-Related Quality of Life (HRQoL) in Parkinson's disease (PD). We evaluated the influence of quantitative physical activity parameters among other (disease-related) features representing other domains of the WHO International model for classification of Function, Disability, and Health (ICF) on HRQoL in PD. METHODS: Home-based movement data (DynaPort MiniMod®) was collected in 47 PD patients. Nine stepwise regression models were calculated, with consecutive outcome variables: Parkinson's Disease Questionnaire (PDQ) Summary Index (SI), PDQ-Mobility, PDQ-Activities of Daily Living (ADL). Demographic variables, disease-specific features, and quantitative physical activity parameters, were included as predicting variables in all analyses. The following three physical activity parameters were alternately included for both sedentary and active episodes: 'percentage' of 24 h spent within these episodes, 'number of bouts', and 'mean bout lengths' (MBL). RESULTS: Depression and 'Total Energy Expenditure' were the main predictors of overall HRQoL (PDQ-SI), independent of the permutation of activity parameters. The same parameters predicted the PDQ-Mobility score. However, this result was altered when 'MBL' parameters were included into the model, 'MBL' of sedentary episodes additionally predicted HRQoL-Mobility. The PDQ-ADL score was associated with demographic, motor, and non-motor variables including cognitive status. After exclusion of demented PD patients, older age and cognitive impairment no longer constrained HRQoL-ADL. DISCUSSION: For the first time, we showed the influence of objective, home-based measured physical activity among depression and cognition on HRQoL in PD. This suggests that a multifactorial treatment approach would be most successful to increase HRQoL in PD.

Effect of Fear of Falling on Turning Performance in Parkinson's Disease in the Lab and at Home.

Background: Parkinson's disease (PD) is a neurodegenerative movement disorder associated with gait and balance problems and a substantially increased risk of falling. Falls occur often during complex movements, such as turns. Both fear of falling (FOF) and previous falls are relevant risk factors for future falls. Based on recent studies indicating that lab-based and home assessment of similar movements show different results, we hypothesized that FOF and a positive fall history would influence the quantitative turning parameters differently in the laboratory and home. Methods: Fifty-five PD patients (43 underwent a standardized lab assessment; 40 were assessed over a mean of 12 days at home with approximately 10,000 turns per participant; and 28 contributed to both assessments) were classified regarding FOF and previous falls as "vigorous" (no FOF, negative fall history), "anxious" (FOF, negative fall history), "stoic" (no FOF, positive fall history) and "aware" (FOF, positive fall history). During the assessments, each participant wore a sensor on the lower back. Results: In the lab assessment, FOF was associated with a longer turning duration and lowered maximum and middle angular velocities of turns. In the home evaluations, a lack of FOF was associated with lowered maximum and average angular velocities of turns. Positive falls history was not significantly associated with turning parameters, neither in the lab nor in the home. Conclusion: FOF but not a positive fall history influences turning metrics in PD patients in both supervised and unsupervised environments, and this association is different between lab and home assessments. Our findings underline the relevance of comprehensive assessments including home-based data collection strategies for fall risk evaluation.

No relevant association of kinematic gait parameters with Health-related Quality of Life in Parkinson's disease.

BACKGROUND: Health-related Quality of Life (HrQoL) is probably the most important outcome parameter for the evaluation and management of chronic diseases. As this parameter is subjective and prone to bias, there is an urgent need to identify objective surrogate markers. Gait velocity has been shown to be associated with HrQoL in numerous chronic diseases, such as Parkinson's disease (PD). With the development and wide availability of simple-to-use wearable sensors and sophisticated gait algorithms, kinematic gait parameters may soon be implemented in clinical routine management. However, the association of such kinematic gait parameters with HrQoL in PD has not been assessed to date. METHODS: Kinematic gait parameters from a 20-meter walk from 43 PD patients were extracted using a validated wearable sensor system. They were compared with the Visual Analogue Scale of the Euro-Qol-5D (EQ-5D VAS) by performing a multiple regression analysis, with the International Classification of Functioning, Disability and Health (ICF) model as a framework. RESULTS: Use of assistive gait equipment, but no kinematic gait parameter, was significantly associated with HrQoL. CONCLUSION: The widely accepted concept of a positive association between gait velocity and HrQoL may, at least in PD, be driven by relatively independent parameters, such as assistive gait equipment.

A Viewpoint on Wearable Technology-Enabled Measurement of Wellbeing and Health-Related Quality of Life in Parkinson's Disease.

In this viewpoint, we discuss how several aspects of Parkinson's disease (PD) - known to be correlated with wellbeing and health-related quality of life-could be measured using wearable devices ('wearables'). Moreover, three people with PD (PwP) having exhaustive experience with using such devices write about their personal understanding of wellbeing and health-related quality of life, building a bridge between the true needs defined by PwP and the available methods of data collection. Rapidly evolving new technologies develop wearables that probe function and behaviour in domestic environments of people with chronic conditions such as PD and have the potential to serve their needs. Gathered data can serve to inform patient-driven management changes, enabling greater control by PwP and enhancing likelihood of improvements in wellbeing and health-related quality of life. Data can also be used to quantify wellbeing and health-related quality of life. Additionally these techniques can uncover novel more sensitive and more ecologically valid disease-related endpoints. Active involvement of PwP in data collection and interpretation stands to provide personally and clinically meaningful endpoints and milestones to inform advances in research and relevance of translational efforts in PD.

Health-Related Quality of Life in patients with Parkinson's disease--A systematic review based on the ICF model.

We analyzed features associated with a reduction in Health-Related Quality of Life (HRQoL) in people with idiopathic Parkinson's disease (PD). As a new approach, features were embedded in the WHO framework for measuring health and disability, the ICF model. From 609 articles screened, 114 articles were included. Features aligned with the ICF's body functions and structures domain (BFS) were investigated more often than personal features, activities of daily living, environmental factors, and participation in societal roles (95, 42, 35, 29 and 14 times, respectively). The strongest associations were found for the relationships between HRQoL and "psychosocial functioning" from the participation domain and HRQoL, and "mobility limitations" from the activities domain. For the BFS, non-motor symptoms were more closely associated with reduced HRQoL than motor symptoms. In conclusion, this systematic review (i) provides entirely new insights in the association of HRQoL with PD features, (ii) shows an imbalance between most extensively investigated and most relevant features for HRQoL, and (iii) demonstrates the usefulness of the ICF model for such an approach.

Quantitative Timed-Up-and-Go Parameters in Relation to Cognitive Parameters and Health-Related Quality of Life in Mild-to-Moderate Parkinson's Disease.

INTRODUCTION: The instrumented-Timed-Up-and-Go test (iTUG) provides detailed information about the following movement patterns: sit-to-walk (siwa), straight walking, turning and walk-to-sit (wasi). We were interested in the relative contributions of respective iTUG sub-phases to specific clinical deficits most relevant for daily life in Parkinson's disease (PD). More specifically, we investigated which condition-fast speed (FS) or convenient speed (CS)-differentiates best between mild- to moderate-stage PD patients and controls, which parameters of the iTUG sub-phases are significantly different between PD patients and controls, and how the iTUG parameters associate with cognitive parameters (with particular focus on cognitive flexibility and working memory) and Health-Related-Quality of Life (HRQoL). METHODS: Twenty-eight PD participants (65.1 ± 7.1 years, H&Y stage 1-3, medication OFF state) and 20 controls (66.1 ± 7.5 years) performed an iTUG (DynaPort®, McRoberts BV, The Netherlands) under CS and FS conditions. The PD Questionnaire 39 (PDQ-39) was employed to assess HRQoL. General cognitive and executive functions were assessed using the Montreal Cognitive Assessment and the Trail Making Test. RESULTS: The total iTUG duration and sub-phases durations under FS condition differentiated PD patients slightly better from controls, compared to the CS condition. The following sub-phases were responsible for the observed longer total duration PD patients needed to perform the iTUG: siwa, turn and wasi. None of the iTUG parameters correlated relevantly with general cognitive function. Turning duration and wasi maximum flexion velocity correlated strongest with executive function. Walking back duration correlated strongest with HRQoL. DISCUSSION: This study confirms that mild- to moderate-stage PD patients need more time to perform the iTUG than controls, and adds the following aspects to current literature: FS may be more powerful than CS to delineate subtle movement deficits in mild- to moderate-stage PD patients; correlation levels of intra-individual siwa and wasi parameters may be interesting surrogate markers for the level of automaticity of performed movements; and sub-phases and kinematic parameters of the iTUG may have the potential to reflect executive functioning and HRQoL aspects of PD patients.