SELF-MANAGEMENT BEHAVIORS IN PARKINSON’S DISEASE: MAPPING AND TESTING ASSOCIATIONS TO HEALTH AND FUNCTION

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M. Kafri1, G. Yogev-Seligmann2, M. Duvdevani2, M. Nassar3, R. Hadad3, I. Erikh3, I. Schlesinger3
1University of Haifa, Department of Physical Therapy, Faculty of Social Welfare & Health Sciences, Haifa, Israel, 2University of Haifa, Department of Occupational Therapy, Faculty of Social Welfare & Health Sciences, Haifa, Israel, 3Rambam Health Care Campus, Movement Disorders Institute, Department of Neurology, Haifa, Israel

Background: Self-management has been considered a pivotal element in the management of chronic diseases and has been recommended as the best practice for improving clinical care and outcomes for chronic conditions. In people with Parkinson's disease (PD), there is no comprehensive mapping of engagement in self-management behaviors (e.g. regular physical activity or medication management), or of the likelihood to adopt self-management behaviors as indicated by subjective measures of self-management (e.g. level of ‘patient’s activation’). Moreover, evidence about the association of self-management behaviors to health outcomes is scarce.

Purpose: (1) map self-management behaviors and patients' knowledge, skills and confidence in managing their health (i.e. ‘patient’s activation’), and (2) test the association between ‘patients' activation’ and health and Quality of life.

Methods: Sixty-eight people with PD (age 67.75 ± 8.2, 48 males, 20 females, Hoehn and Yahr disease staging a 2.48 ± 0.81) who are treated at a Movement Disorder outpatient clinic participated. Self-management behaviors were assessed by self-reported participation in rehabilitative treatments in the last year, the amount of weekly engagement in physical activity as measured by the International Physical Activity Questionnaires (IPAQ) and ‘patient’s activation’ as measured by the Patient’s Activation Measure (PAM®). The PAM tool consists of 13 statements rated on a Likert scale. PAM scores range between 0 and 100. Scores are divided into 4 levels, where 1 represents patients who tend to be passive and feel overwhelmed managing their health, and 4 represents patients who have effectively adopted self-management behaviors.
Health outcomes included measures of disease progression and severity including Levodopa Equivalent Dose (LED), the Unified Parkinson Disease Rating Scale (UPDRS), Non-Motor Symptoms Questionnaire (NMSQ), Frenchay Activities Index and gait speed. Quality of life was assessed by the Parkinson's Disease Questionnaire (PDQ-39).

Results: Most of the participants did not attend rehabilitative treatments: only 10.3% of the participants received individual physiotherapy treatment, 1.5% received occupational therapy, and 3% received speech therapy. More than 60% of the participants reported ≥ 600 MET minutes/week, which is considered sufficiently active.
According to their responses, 10% of the participants were categorized as PAM level one, 12% as level two, 43% as level three, and 35% as level four (highest level of activation). PAM score was associated with the IPAQ (r=0.332, p=0.006), with health outcomes including NMSQ score (r=-0.450, p<0.001), UPDRS motor score (r=-0.249, p=0.046), the Frenchay score (r=0.377, p=0.002) and gait speed (r=0.339, p=0.005). It was not associated to LED or change in LED in the past 3 years. In addition, PAM was associated with multiple aspects of the PDQ-39 (r range=-0.477- -0.357, p<0.003).

Conclusion(s): The engagement in rehabilitative care in our sample of people with PD, who live in the community, is low. Their lifestyle in the context of physical activity range widely, with most participants, however, having a sufficient level of activity. Participants who have a high level of activation present better health and quality of life.

Implications: Community healthcare services should develop resources to support patients' activation.  Increasing awareness of the potential benefits of rehabilitative care is needed.

Funding, acknowledgements: This study was partially funded by an internal grant from the University of Haifa and Rambam Health Care Campus.

Keywords: Parkinson's Disease, Self-management, Health

Topic: Neurology: Parkinson's disease

Did this work require ethics approval? Yes
Institution: Rambam Health Care Campus
Committee: The Helsinki committee of Rambam Health Care Campus
Ethics number: 0067-19-RMB


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