Parkinson’s Patients and Caregivers are Active, but Lack Self-management Support, Study Finds

Joana Carvalho, PhD avatar

by Joana Carvalho, PhD |

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Self-management and PD

Patients with Parkinson’s disease and their caregivers are usually active and ready to adopt strategies to improve their quality of life and disease management, but lack self-management support, a study finds.

The study, “Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease,” was published in Quality of Life Research.

Parkinson’s disease is a progressive neurological disease characterized by the gradual loss of muscle control, sometimes accompanied by cognitive deficits that can significantly affect patients’ quality of life.

For this reason, “people with [Parkinson’s disease] and their caregivers require a collaborative approach to healthcare to optimize functioning and promote quality of life,” researchers stated.

This collaborative approach requires patients and their caregivers to be active, well-informed, confident and willing to engage and communicate with healthcare providers to manage disease symptoms and improve their overall quality of life.

However, the lack of integrated care programs, including self-management strategies and education, often result in “PD patients [being] underinformed about critical care issues and experience lack of collaboration among members of their healthcare team.” Self-management refers to patients having the skills and confidence necessary to manage day-to-day tasks and live well with a chronic health condition.

In this study, researchers developed and implemented an integrated approach to care in a tertiary Parkinson’s disease clinic in Ottawa, Canada.

The team chose a process of co-design, where the user viewpoint is essential to inform service delivery.  Patients and caregiver input was gathered through surveys and interviews and used to  develop a model that incorporates care integration, self-management support, and technology-enabled care: the Integrated Parkinson’s Care Network (IPCN).

The observational, cross-sectional study involved 108 participants who were asked to complete two questionnaires: one to evaluate perceived self-management support (Patient Assessment of Chronic Illness Care plus); and the other to assess knowledge, skills, and confidence for managing their own health or that of a loved one (Patient or Caregiver Activation Measure).

A total of 57 Parkinson’s patients and 31 caregivers completed the questionnaires. A subset of 13 patients, six caregivers and six healthcare providers also participated in semi-structured interviews, designed to gather information on participant experiences of managing disease, accessing or providing care, information and support; and areas that worked well and areas for improvement.

Findings revealed that 58% of study participants were moderately or highly active at facing and managing Parkinson’s daily challenges. Caregivers tended to be slightly more active than those living with the disease. Additionally, older adults who require a mobility aid or assistance with activities of daily living tend to be less active.

“Knowledge of patient and caregiver levels of activation can be used to tailor interventions to promote adoption of health behaviors,” researchers stated.

Although patients’ and caregivers’ perceptions of self-management support varied, in general they expressed a lack of goal-setting and follow-up support or coordination. Findings also identified the need to provide relevant information and assistance to access “resources and ongoing monitoring of how patients are managing their condition.”

Participants felt better informed and satisfied when healthcare providers “engaged in open communication and shared decision-making.”

There was a positive association between patients’ goal-setting and the level of follow-up and coordination of care they received. “Goal-setting that is led by the patient may facilitate a more focused approach to care that supports shared decision-making and targets individualized needs for follow-up,” researchers stated.

The team noted that although these findings are designed to inform service development at one clinic, “they can sensitize healthcare providers to the individualized needs of people with  [Parkinson’s disease] and their caregivers.”

“While participants perceived varying levels and types of self-management support, a lack of goal-setting, follow-up, and coordination of care and access to services were highlighted as gaps. Adapting service provision to address these gaps is critical for collaborative care,” they concluded.