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PurposeThe formative evaluation of a standardized psychosocial education program for patients with Parkinson’s disease (PD) and their caregivers. The results of the participation of the caregivers are presented next to the data of the patients.MethodsCaregivers (n = 137) and patients with PD (n = 151) participated in the 8-week program in separate groups. Measurements were performed on psychosocial problems (BELA-P/A-k), health state (EQ-5D VAS), quality of life (PDQ-39) and depression (SDS) 1 week before and 1 week after the program. Participants rated their mood on a visual analogue scale before and after each session, and they filled in an evaluation questionnaire after the last session.ResultsScores on the BELA-P/A-k improved significantly on the ‘bothered by scale’ as well as the ‘need for help scale’. No improvements were found on EQ-5D VAS, PDQ-39 and SDS. Mood ratings improved significantly after each session. Most participants evaluated the program as positive. Feedback led to improvements in the program, which are incorporated in a final manual.ConclusionsThe program was feasible to run in the different countries. This exploratory study led to improvements in the program and recommendations for further research. A study on the effectiveness of the program is the next step.

Effects from the RCT study were replicated and the effect on patients' Qol was now significant. However, at 6-month follow-up, scores returned to baseline levels, indicating the need for some form of a booster session.

Self-reports of executive performance are generally reliable, but 29% of patients with MS underestimated or overestimated their abilities. It is especially important to identify underestimators as they display underlying psychological problems and dysfunctional coping styles in need of further psychological treatment. Informants are valuable in this respect, but should not be seen as the 'gold standard' to identify cognitive impairment.