Patients', doctors', and caregivers' assessment of disability using the UPDRS-ADL section: Are these ratings interchangeable?

• Published in: Movement disorders 2003-09, Vol.18 (9), p.985-992
• Main Authors: Martínez-Martín, Pablo, Benito-León, Julian, Alonso, Fernando, Catalán, M. José, Pondal, Margarita, Tobías, Aurelio, Zamarbide, Ivana
• Format: Article
• Language: English
• Subjects: Aged; Biological and medical sciences; caregiver; caregiver, rating scales; Caregivers; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; disability; Disability Evaluation; Female; Humans; Male; Medical sciences; Motor Skills; Neurologic Examination; Neurology; Observer Variation; Parkinson Disease - diagnosis; Parkinson Disease - psychology; Parkinson Disease - rehabilitation; Parkinson's disease; Physicians; Psychometrics; rating scales; Reproducibility of Results; Self-Assessment; Severity of Illness Index; UPDRS
• ISSN: 0885-3185; 1531-8257
• DOI: 10.1002/mds.10479

This multicenter study sought to analyze the validity and reliability of the Unified Parkinson's Disease Rating Scale (UPDRS)‐section 2 (Activities of Daily Living, ADL) as applied by patients and caregivers. Sixty pairs of PD patients–caregivers were enrolled for study purposes. Neurologists used a set of scales to determine disease severity and patients' functional state. Patients and caregivers used adapted versions of the UPDRS‐section 2 in tandem with other measures. Wilcoxon and Mann‐Whitney tests, weighted κ, intraclass and Spearman's correlation coefficients, as well as multivariate linear regression models were applied. On the whole, PD patient self‐assessment and caregiver evaluation of patients' disability showed close concordance with neurologists' ratings. Correlation between caregiver ratings and clinical evaluation tended to be slightly lower than that for patient‐based self‐assessment. Depression showed a positive correlation with disability and had a nonsystematic influence on UPDRS‐section 2 (ADL) scores. As expected, there was a significant correlation between perceived disability and health‐related quality of life measures. Caregiver burden did not reduce the level of agreement with neurologists as to the overall rating of any given patient's disability. In PD, UPDRS‐section 2–based assessment of disability by patients themselves and caregivers is a valid and reliable outcome. © 2003 Movement Disorder Society