Observed and Patient-Perceived Information Provision When Diagnosed With Parkinson's Disease.

Background: People with Parkinson's disease (PD) perceive to receive insufficient disease-specific information after diagnosis, whereas clinicians report providing all relevant information.

Objectives: The objectives were to examine the information actually provided by clinicians during diagnostic consultations and its relations with background characteristics, information needs, and the perception and evaluation of provided information.

Methods: This prospective observational longitudinal study combined data from questionnaires and recorded diagnostic consultations at 6 neurology outpatient clinics in the Netherlands. Recordings were systematically coded for duration and extensiveness of information regarding diagnosis, treatment, disease course, and information gathering. Patients and companions completed questionnaires assessing preferred and perceived amount of information, and satisfaction with information (all ranges 1 [low] to 5 [high]).

Results: Total consultation time (N = 50 patients and N = 30 companions) was 48.0 ± 19.4 (mean ± SD) minutes of which 12 ± 7 minutes were dedicated to information provision. Most time was spent on the theme "treatment" (6.9 ± 4.3 minutes) and least on "disease course" (1.4 ± 1.7 minutes). Neither duration nor extensiveness of provided information was related to patients' generally high information preference (score 4.4 ± 0.7). Patients and their companions perceived a fair amount of information given (score 2.8 ± 0.9) and were quite satisfied (score 3.4 ± 0.9). Nonetheless, one-third of patients expressed a desire for more information, specifically concerning the course of PD.

Conclusion: During diagnostic consultations for PD, clinicians primarily focused on treatment-related information. Although patients were generally satisfied, information needs concerning the implications of PD for their future lives were not met for all patients.