Caregivers of Patients With Recurrent Symptoms of Parkinson Disease Exposed to Greater Financial Burden, Loss of Employment

Caregivers of patients with Parkinson disease (PD) experiencing symptom recurrence after a period of symptom control, known as OFF periods, reported that PD had a greater impact on their paid employment through variables such as loss of earnings, loss of opportunities, or ability to maintain employment, compared with caregivers for patients without OFF periods.

Research presented at AMCP Nexus 2019 in National Harbor, Maryland, sought to assess the financial burden of caregivers for patients with PD (PwP) who are in OFF periods. Another study presented at the conference found that 56.3% of PwP undergoing OFF periods cited symptom recurrence as a major reason to stop working, 25.4 percentage points more than PwP without OFF periods (30.9%).

These OFF periods place a large burden on caregivers who have to dedicate time and resources to treating PwP, which influenced researchers from the Michael J. Fox Foundation (MJFF) and Parkinson Foundation to deploy the “Financial and Social Impact of Parkinson Disease Survey” to assess the financial burden of PD for PwP and their families. Study authors noted that while prior studies have found that the impact of PD on the physical and emotional well-being of caregivers increases as the disease progresses, no studies have assessed the impact of OFF periods on the employment and financial burden of caregivers, especially compared with non-OFF periods.

Data were derived from the MJFF survey and analyzed from September 17, 2018, to October 8, 2018:

• One survey per household completed voluntarily online by the PwP (n = 3098), care partner (n = 1264), family member (n = 180), or close friend of the PwP (n = 6)
• Respondents (n = 4548) completed the survey on behalf of themselves and other household members
• Data from respondents who reported that PwP experienced OFF periods in the past 12 months were compared with data from those who reported no OFF periods in the past 12 months

Based on survey respondent data, 2976 (65.4%) of patients were reported as having OFF periods, compared with 1204 (26.5%) without OFF periods, with 368 (8.1%) reporting no response/not knowing.

Analyses found that primary and secondary caregivers spent a combined 38.2 unpaid hours per week caring for PwP with OFF, compared with 28.2 hours for PwP without OFF. Primary caregivers of PwP with OFF periods gave 69.3% of time providing unpaid care compared with 54.3% of time dedicated to PwP without OFF periods, and more time was allocated by secondary caregivers of PwP with OFF periods as well (23.5% vs 11.8%).

The additional time spent by caregivers of PwP with OFF periods showed a significant trend in impeding employment for 27.5% of respondents, as they stated PD played a major role in decisions to stop working compared with 16.6% of those who care for PwP without OFF periods. Additionally, 41.7% of all caregivers (primary, 46.2%; secondary, 26.0%) for PwP with OFF periods reduced or changed their working hours, lost opportunities, or were unable to maintain employment for reasons related to PD compared with 30.2% of caregivers for PwP without OFF periods (primary, 31.3%; secondary, 24.5%).

As caregivers for PwP with OFF exhibited a greater loss in annual income compared to those without, study results show the significant impact of symptom control for PD. “These findings suggest that greater consideration of the financial burden on caregivers needs to be given when organizing and planning for PD care in healthcare systems,” said the study authors.

Reference

Abeynayake I, Klingler M, Kenney C. The financial burden of Parkinson’s disease is greater for caregivers of people experiencing OFF periods. Presented at: AMCP Nexus; October 29-November 1, 2019; National Harbor, MD. Abstract P9296.