Keywords: parkinson's disease, burden questionnaire, patient's perspective, caregiver's perspective, general practice, France
Parkinson’s Disease (PD) is a common neurodegenerative condition. It’s various clinical expression affects patient’s and caregivers’ psycho-social well-being. To assess the PD-related psychosocial burden in a dyad (patient and spouse), two specific questionnaires exist in German. The Bela-A-K and Bela-P-K, questionnaires allow healthcare professionals to cross-check the patient’s (Bela-P-K) and the spouse’s (Bela-A-K) perspective of well-being despite PD. Four dimensions are explored: physical performance, emotional charge, social relationships, and couple/family life. The study purpose was to translate, to test among French patients and spouses, and to validate the translated versions.
How strong are the questionnaires’ internal consistency and temporal stability?
The questionnaires have been translated from German into French, using the for-and backward translation, followed by a cultural cross-check. The participants were recruited by a GP and a PD-nurses and invited to test the consensual French version in its online administered version, created via the Lime Survey® software. The participants had to fill out the questionnaires twice to respect the “test-re-test” method. Five days after their first assessment, they answered again. Data analysis was performed, using the SPSS software.
Nineteen couples participated in the study, 18 patients (14 M/4F); 18 spouses (4M/14F).
The Bela-A-K showed a strong temporal stability, whereas it was weak for the dimension of social relationships. The Bela-P-K showed a strong internal consistency, but significative differences for ten items between the moment of test and retest. Some items of the Bela-P-K must be simplified to improve its temporal stability, considering the patient’s changing form on the day. The items related to the dimension of social relationships must be adjusted for the Bela-A-K.
The questionnaires are useful and reliable. They contribute to a positive psychological dyad-centred follow-up and positive health education in case of PD.
Points for discussion:
Interesting cross-check of the daily life experience with Parkinson's disease between patients and caregivers