No abstract

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.

The goal of the Patient Education Program for Huntington's disease is to improve quality of life for patients and caregivers, to educate and train them in order to develop coping strategies to deal with psychosocial stressors. The program was derived from a standardized evidence-based program for Parkinson's disease. This pilot study assessed the feasibility of the program in Huntington's disease. Forty manifest patients with 28 caregivers and 19 premanifest carriers with 14 partners participated. Assessments for depression and anxiety, psychosocial burden, need for help, quality of life, coping, behavioral, motor and cognitive status were performed. After program completion, significant improvement of behavioral symptoms and anxiety was found for manifest HD patients, and they used a less passive coping style and more social support. Their caregivers reported less psychosocial burden. Premanifest carriers and their partners improved their coping by seeking social support more often. This pilot study demonstrated the feasibility of the program in Huntington's disease, especially in the manifest stage of the disease. Further research to assess the effectiveness of the program seems warranted.

A potential predictor of treatment benefit was found for caregivers of PD patients with better cognitive functioning. This study did not find treatment effect modifiers for PD patients: demographics, disease stage and time of diagnosis, cognitive functioning, level of baseline psychosocial burden, participating with or without a caregiver, and caregiver changes did not influence treatment outcome. The PEPP seems suitable for the majority of patients.