Caregiver education in Parkinson's disease: formative evaluation of a standardized program in seven European countries.
OBJECTIVE
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.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
A'Campo
L E I
LE
Department of Neurology, Leiden University Medical Center (LUMC), Leiden, The Netherlands. l.e.i.a_campo@lumc.nl
Spliethoff-Kamminga
N G A
NG
Macht
M
M
Roos
R A C
RA
D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000517:prevention & control; D017028:Caregivers / Q000193:education* / Q000523:psychology; D017281:Cost of Illness; D003479:Curriculum; D003863:Depression / Q000517:prevention & control; D005060:Europe / Q000453:epidemiology; D005240:Feasibility Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D010043:Outcome and Process Assessment, Health Care; D010300:Parkinson Disease / Q000451:nursing* / Q000523:psychology / Q000534:rehabilitation*; D015397:Program Evaluation; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires