Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status

Horacio Chiong-Rivero¹, Gery W Ryan², Charles Flippen³, Yvette Bordelon³, Nicholas R Szumski⁴, Theresa A Zesiewicz⁵, Stefanie Vassar^3,6, Beverly Weidmer², Rosa Elena García², Melissa Bradley², Barbara G Vickrey^2,3,6
1Department of Neurology, Los Angeles County and University of South California Medical Center, Los Angeles, CA, USA; ²RAND Corporation, Santa Monica, CA, USA; ³Department of Neurology, David Geffen School of Medicine at University of California Los Angeles, Los Angeles, CA, USA; ⁴Department of Neurology, Cedars-Sinai Medical Center, Los Angeles, CA, USA; ⁵Department of Neurology, University of South Florida, Tampa, FL, USA; ⁶VA Greater Los Angeles Healthcare System, Parkinson’s Disease Research, Education, and Clinical Center, Los Angeles, CA, USA

Background: Parkinson’s disease (PD) is a neurodegenerative disease that significantly affects patients’ quality of life. The myriad complexities of the disease, including its nonmotor manifestations, are beginning to be more fully appreciated, particularly in regard to the emotional and social effects of PD. Considering that both motor and nonmotor manifestations of PD significantly influence the health outcomes and conditions of patients, and their health-related quality of life (HRQOL), we collected qualitative data from patients with PD, as well as caregivers of persons with PD having cognitive impairment, to assess their perceptions of the impact of PD on HRQOL.
Methods: We conducted eight focus groups and five one-on-one interviews in English and in Spanish between March 2007 and February 2008. Three of the focus groups were conducted with a total of 15 caregivers; the remaining focus groups and all interviews were conducted with 48 PD patients. Study participants were asked about the challenges that PD patients may experience, particularly pertaining to physical functioning, the impact of PD on their emotional status, and social functioning.
Results: Based on analysis of the transcripts, we identified seven overarching domains or themes that reflect patients’ perspectives on living with PD, ie, physical functioning, social and role functioning, emotional impact, fears and uncertainty about the future, stigma and other feelings about PD, coping mechanisms, and benefits of having PD.
Conclusion: We underscore the salient aspects regarding the physical effects of PD along with its nonphysical ramifications, offering perspectives into the experience of PD and suggestions on how PD patients and their caregivers may cope with the disease.

Keywords: focus groups, qualitative, neurodegenerative, health-related quality of life