Quality-of-life perception by Parkinson's disease patients and caregivers.

BACKGROUND: The quality-of-life (QoL) perception by Parkinson's disease (PD) patients and their caregivers (CG) has not been studied in depth.

OBJECTIVE: To examine patient/proxy agreements on the PD QoL Questionnaire (PDQ-39), the Scale of Quality of Life of Care-Givers (SQLC) and the Multidimensional Caregiver Strain Index (MCSI).

METHODS: Patients with PD and their CG completed the above-mentioned questionnaires about themselves and each other. The intraclass correlations between their scores (paired t test) were compared.

RESULTS: Twelve patient-CG pairs were studied. Agreements for QoL items were strong and comparable for the total scores of the PDQ-39, SQLC and MCSI questionnaires (75.4% ± 14%; 78.1% ± 14.1% and 78.2% ± 14.3%, respectively). Agreements ranged from moderate to strong (0.57-0.88, P≤.05) for the patients' physical condition (PDQ-39 items 3, 5, 6, 8, 12-15, 23, 24, 35), mental concentration (item 31) and depression (item 17). Disagreements were apparent in 20%-25% of the pairs and were particularly significant for PDQ-39 items #33 and #25 (embarrassment of patients in public and distressing dreams or hallucinations), in which the CG gave higher scores than the patients.

CONCLUSIONS: Agreements between patients with PD and CG were generally good for most, but not all, of the PDQ-39, SQLC and MCSI domains.