This study aimed to: (a) map self-management behaviors of people with Parkinson's (PwP) (b) examine individual and social determinants of these behaviors, and (c) investigate associations between self-management behaviors and quality of life.
A cross-sectional study was conducted with 150 PwP who completed a series of questionnaires.
Self-management behaviors included engagement in physical activity assessed using the International Physical Activity Questionnaire Short Form (IPAQ-Short), level of patient activation measured by the Patient Activation Measure (PAM-13), and knowledge about Parkinson’s disease assessed using the Knowledge of Parkinson’s Disease Questionnaire (KPDQ).
Individual Determinants of self-management included socio-demographics, disease severity as measured by the Unified Parkinson Disease Rating Scale (UPDRS), cognitive status as measured by the Mini-Mental State Examination (MMSE), and health locus of control as measured by the Multidimensional Health Locus of Control Scale (MHLOC). Social factors included social support as measured by the Multidimensional Scale of Perceived Social Support (MSPSS). Quality of life was measured using the Parkinson’s Disease Questionnaire (PDQ-39).
The participants were engaged in physical activity at a moderate level (IPAQ median = 594, IQR = 0-1197.75). Participants answered correctly on 70% (IQR = 57.50-90) of the questions related to general knowledge on the KPDQ. The patient activation score was similar to those observed in other chronic populations (median = 58.10, IQR = 45.30-70.20). Significant disparities were observed between Arab and Jewish populations in all self-management behaviors (p-values ranged from 0.03 to 0.0001).
Regression analyses showed that physical activity, disease knowledge, and patient activation were significantly associated with the following factors: religious observance, education, age, health locus of control, cognitive function, disease severity, ethnicity, and social support. Moreover, social support was a significant determinant of all self-management behaviors.
Lower levels of engagement in physical activity, knowledge about the disease, and patient activation were significantly associated with reduced quality of life (p .0001).
This research contributes to the understanding of engagement in self-management behaviors among people with Parkinson's disease (PwP) across different ethnic groups. Although many determinants of self-management behaviors are not modifiable (e.g., gender, age, cognition, disease severity, cognitive status), they should be considered when planning interventions to support engagement in self-management behaviors for PwP. The study also emphasizes the need for culturally sensitive approaches to improve patient outcomes and quality of life.
The study underscores the importance of designing tailored intervention plans to teach self-management behaviors while considering the identified obstacles. By addressing these factors, healthcare professionals and policymakers can work towards providing more effective and equitable care for individuals living with Parkinson's disease. In addition, efforts should be made to increase and provide opportunities for social support within the community.
Self-management
Physical activity