title: Patient and caregiver perceptions of the social impact of advanced Parkinson's disease and dyskinesias.
abstract: Parkinson's disease (PD) exacts a physical and emotional toll on both patients and family. The aim of this study was to compare patient and caregiver perceptions of the social consequences of basic symptoms of PD and levodopa-induced dyskinesias. Forty patients with PD and dyskinesias and 35 of their caregivers completed a self-report questionnaire on the impact of PD and dyskinesias on their feelings of security and embarrassment and participation in family/social events, and indicated their preference for the "on" (with dyskinesias) or the "off" (without dyskinesias) state. The patients scored significantly higher than the caregivers did on the negative social impact of the disease in general (p = 0.002) and of the dyskinesias in particular (p = 0.03). Nevertheless, the patients expressed a significantly greater preference for the "on" state (83 %) than the caregivers (59 %) (p = 0.03). Preferences turned to be reverse in direction among spouse-caregivers who significantly preferred the "off" state (54 %) than the patients (25 %) (p = 0.04). Although patients have a worse perception of the effects of PD than their caregivers do, they prefer the more independent "on" state, whereas their caregivers prefer the "off" state.
authors.affiliation: Department of Neurology, Rabin Medical Center, Beilinson Campus, 49100 Petah Tiqva, Israel.
authors.forename: Alexander
authors.initials: A
authors.lastname: Khlebtovsky
authors.forename: Amihai
authors.initials: A
authors.lastname: Rigbi
authors.forename: Eldad
authors.initials: E
authors.lastname: Melamed
authors.forename: Ilan
authors.initials: I
authors.lastname: Ziv
authors.forename: Israel
authors.initials: I
authors.lastname: Steiner
authors.forename: Alona
authors.initials: A
authors.lastname: Gad
authors.forename: Ruth
authors.initials: R
authors.lastname: Djaldetti
mesh_terms: D000368:Aged; D000978:Antiparkinson Agents / Q000009:adverse effects; D017028:Caregivers / Q000523:psychology*; D004409:Dyskinesia, Drug-Induced / Q000209:etiology / Q000523:psychology*; D005260:Female; D006801:Humans; D007980:Levodopa / Q000009:adverse effects; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000188:drug therapy / Q000523:psychology*; D012044:Regression Analysis; D012922:Social Change; D012938:Social Perception; D011795:Surveys and Questionnaires
chemical_list: D000978:Antiparkinson Agents; D007980:Levodopa