Department of Neurology, Leiden University Medical Center (LUMC), Leiden, The Netherlands.
Qual Life Res. 2010 Feb;19(1):55-64. doi: 10.1007/s11136-009-9559-y. Epub 2009 Nov 28.
The 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.
Caregivers (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.
Scores 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.
The 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.
对帕金森病患者及其照顾者的标准化心理社会教育计划进行形成性评价。接下来将展示照顾者的参与数据和患者的数据。
照顾者（n=137）和帕金森病患者（n=151）分别参加了为期 8 周的项目。在项目开始前一周和结束后一周，分别对心理社会问题（BELA-P/A-k）、健康状况（EQ-5D VAS）、生活质量（PDQ-39）和抑郁（SDS）进行测量。参与者在每次课程前后都会在视觉模拟量表上对自己的情绪进行评分，并在最后一次课程结束后填写评估问卷。
BELA-P/A-k 的“困扰量表”和“需要帮助量表”得分显著提高。EQ-5D VAS、PDQ-39 和 SDS 没有改善。每次课程结束后，情绪评分都显著提高。大多数参与者对该项目评价积极。反馈促进了项目的改进，这些改进已纳入最终手册中。
该项目在不同国家的实施是可行的。这项探索性研究对项目进行了改进，并为进一步的研究提出了建议。下一步是研究该项目的有效性。
