title: Activity-based diary for Parkinson's disease.
abstract: The objective of this study was to develop a Parkinson's disease diary that evaluates a patient's difficulties in performing activities as a substitute for the amount of "on"- and "off"-time and to assess its clinimetric qualities. In this study, 84 patients with Parkinson's disease kept a diary for 2 or 3 periods of 5 days. Daily, five items were recorded across 11 time periods. Patients simultaneously recorded "on-off" in the traditional way. The diary was easily understood, and median recording time was 5-10 minutes a day. Clinimetric analysis showed that the diary could be reduced successfully to 3 days, in which five items (walking, transfers, manual activities, dyskinesias, and sleep) with four response options (no, slight, moderate, and severe difficulty) were assessed seven times daily. Sumscores of the first three items accurately predicted being "on" or "off" in 93% of the cases, making separate scoring of "on" and "off" unnecessary. The diary was internally consistent and showed good reproducibility. Construct validity with external measures was adequate, and comparisons between patients grouped by disease severity and by degree of fluctuations revealed significant differences in the expected directions. Taken together, this Parkinson's disease diary has a sound clinimetric basis, provides information on the extent of perceived disability, and thereby accurately reflects the severity of "off"-periods and the variability of motor fluctuations.
authors.affiliation: Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Johan
authors.initials: J
authors.lastname: Marinus
authors.forename: Martine
authors.initials: M
authors.lastname: Visser
authors.forename: Anne M
authors.initials: AM
authors.lastname: Stiggelbout
authors.forename: Jose Martin
authors.initials: JM
authors.lastname: Rabey
authors.forename: Ubaldo
authors.initials: U
authors.lastname: Bonuccelli
authors.forename: Peter H
authors.initials: PH
authors.lastname: Kraus
authors.forename: Jacobus Bob J
authors.initials: JB
authors.lastname: van Hilten
mesh_terms: D000203:Activities of Daily Living; D020820:Dyskinesias / Q000523:psychology; D005260:Female; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000175:diagnosis* / Q000523:psychology; D011597:Psychomotor Performance; D012044:Regression Analysis; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D012893:Sleep Wake Disorders / Q000175:diagnosis / Q000523:psychology; D011795:Surveys and Questionnaires; D013997:Time Factors