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Rev Neurol (Paris) ; 180(1-2): 24-32, 2024.
Article in English | MEDLINE | ID: mdl-37735017

ABSTRACT

BACKGROUND: Parkinson's disease (PD) affects all dimensions of the patient's and the caregiver's daily life. There are two questionnaires in German, Bela-A-k (for caregivers) and Bela-P-k (for PD patients), that can be used to assess the PD-related psychosocial burden in a dyad. The patient's and the caregiver's perspective of living with PD can be crosschecked. Four dimensions are explored: physical performance, emotional load, social relationships, and couple/family life. OBJECTIVES: The purpose of the study was to translate these questionnaires into French and to test them among patients and caregivers. METHODS: The questionnaires were translated from German into French by forward and backward translation, followed by a cultural crosscheck. Participants were invited to test the consensual French version in its online administered version created via Lime Survey® software. Participants filled out the questionnaires twice (five-day interval) according to the test-retest method. Data analysis was performed with SPSS software. RESULTS: Thirty dyads were recruited and eighteen completed the study. Bela-A-K showed strong temporal stability, though it was weak for the social relationships dimension. Bela-P-k showed strong internal consistency, but significant test-retest differences for ten items due to day-by-day changes in patient status. CONCLUSIONS: The questionnaires are useful and reliable for dyad-centered follow-up in case of PD. Some items of the Bela-P-k were simplified to improve its temporal stability, considering the patient's changing status through the day. The items concerning social relationships were adjusted for the Bela-A-k.


Subject(s)
Parkinson Disease , Humans , Parkinson Disease/therapy , Parkinson Disease/psychology , Spouses , Surveys and Questionnaires , Caregivers/psychology , Quality of Life/psychology
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