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

Department of Neurology, Los Angeles County and University of South California Medical Center, Los Angeles, CA, USA.
Patient Related Outcome Measures 03/2011; 2011(2):57-70. DOI: 10.2147/PROM.S15986
Source: PubMed

ABSTRACT 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.

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.

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.

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.

Download full-text


Available from: Beverly A Weidmer, Sep 26, 2015
23 Reads
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Based on published prevalence studies, we used two different methodologies to project the number of individuals with Parkinson disease (PD) in Western Europe's 5 most and the world's 10 most populous nations. The number of individuals with PD over age 50 in these countries was between 4.1 and 4.6 million in 2005 and will double to between 8.7 and 9.3 million by 2030.
    Neurology 02/2007; 68(5):384-6. DOI:10.1212/01.wnl.0000247740.47667.03 · 8.29 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: The goal of this study was to estimate the incidence of Parkinson's disease by age, gender, and ethnicity. Newly diagnosed Parkinson's disease cases in 1994-1995 were identified among members of the Kaiser Permanente Medical Care Program of Northern California, a large health maintenance organization. Each case met modified standardized criteria/Hughes diagnostic criteria as applied by a movement disorder specialist. Incidence rates per 100,000 person-years were calculated using the Kaiser Permanente membership information as the denominator and adjusted for age and/or gender using the direct method of standardization. A total of 588 newly diagnosed (incident) cases of Parkinson's disease were identified, which gave an overall annualized age- and gender-adjusted incidence rate of 13.4 per 100,000 (95% confidence interval (CI): 11.4, 15.5). The incidence rapidly increased over the age of 60 years, with only 4% of the cases being under the age of 50 years. The rate for men (19.0 per 100,000, 95% CI: 16.1, 21.8) was 91% higher than that for women (9.9 per 100,000, 95% CI: 7.6, 12.2). The age- and gender-adjusted rate per 100,000 was highest among Hispanics (16.6, 95% CI: 12.0, 21.3), followed by non-Hispanic Whites (13.6, 95% CI: 11.5, 15.7), Asians (11.3, 95% CI: 7.2, 15.3), and Blacks (10.2, 95% CI: 6.4, 14.0). These data suggest that the incidence of Parkinson's disease varies by race/ethnicity.
    American Journal of Epidemiology 07/2003; 157(11):1015-22. · 5.23 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: In a randomized, single-blind, crossover study, we evaluated physical disability in moderately advanced Parkinson's disease (PD) patients after 4 weeks of normal physical activity and 4 weeks of an intensive physical rehabilitation program. We used a timed motor task and a standard assessment of PD severity (the Unified Parkinson's Disease Rating Scale [UPDRS] with subscales for mentation, activities of daily living [ADL], and motor function) completed by an investigator blinded to the physical rehabilitation status of the patient. Following physical rehabilitation, there was significant improvement in the UPDRS ADL and motor scores, but no change in mentation score. During the 6 months following physical rehabilitation, patients did not regularly exercise, and the UPDRS scores returned to baseline. We conclude that physical disability in moderately advanced PD objectively improves with a regular physical rehabilitation program, but this improvement is not sustained when normal activity is resumed.
    Neurology 04/1994; 44(3 Pt 1):376-8. DOI:10.1212/WNL.44.3_Part_1.376 · 8.29 Impact Factor
Show more