Crosschecking the subjective everyday Parkinson's experience among patients and their caregiving spouses: French versions of the Belastungsfragebogen Parkinson Kurzversion (Bela-P-k and Bela-A-k).

Burden assessment Cross-check Parkinson's disease Patient's perspective Translation

Journal

Revue neurologique
ISSN: 0035-3787
Titre abrégé: Rev Neurol (Paris)
Pays: France
ID NLM: 2984779R

Informations de publication

Date de publication:
19 Sep 2023
Historique:
received: 18 02 2022
revised: 11 05 2023
accepted: 10 07 2023
medline: 22 9 2023
pubmed: 22 9 2023
entrez: 21 9 2023
Statut: aheadofprint

Résumé

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. The purpose of the study was to translate these questionnaires into French and to test them among patients and caregivers. 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. 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. 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.

Sections du résumé

BACKGROUND 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 OBJECTIVE
The purpose of the study was to translate these questionnaires into French and to test them among patients and caregivers.
METHODS 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 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 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.

Identifiants

DOI: 10.1016/j.neurol.2023.07.009 PMID: 37735017
pubmed: 37735017
pii: S0035-3787(23)01020-2
doi: 10.1016/j.neurol.2023.07.009
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

Copyright © 2023 Elsevier Masson SAS. All rights reserved.

Auteurs

S Bayen (S)

Department of General Practice, University of Lille, 59000 Lille, France; Department of pharmacology, Expert center for Parkinson's disease, CHU of Lille, University of Lille, Lille Neuroscience and Cognition Inserm 1172, 59000 Lille, France. Electronic address: sabine.bayen@univ-lille2.fr.

J Heutte (J)

University of Lille, ULR 4354 - CIREL - Centre interuniversitaire de recherche en éducation de Lille, 59000 Lille, France.

J-C Vanderbecken (JC)

Department of General Practice, University of Lille, 59000 Lille, France.

C Moreau (C)

Department of Neurology, Expert center for Parkinson's disease, CHU of Lille, Lille Neuroscience and Cognition Inserm 1172, 59000 Lille, France.

L Defebvre (L)

Department of Neurology, Expert center for Parkinson's disease, CHU of Lille, Lille Neuroscience and Cognition Inserm 1172, 59000 Lille, France.

R Billot (R)

Department LUSSI, IMT, UMR CNRS 6285 Lab-STICC, University of Brest, Brest, France.

V Guiton (V)

University of Brest, 2PE, CHU of Brest, Brest, France.

C Lemey (C)

Department of Psychiatry, UAMP, CHU Brest, University of Brest, Brest, France.

H Lingner (H)

Department of General Practice, Medical School Hannover, University of Hannover, Hannover, Germany.

W Messaadi (W)

Department of General Practice, University of Lille, 59000 Lille, France.

D Devos (D)

Department of pharmacology, Expert center for Parkinson's disease, CHU of Lille, University of Lille, Lille Neuroscience and Cognition Inserm 1172, 59000 Lille, France.

N Messaadi (N)

Department of General Practice, University of Lille, 59000 Lille, France; University of Lille, National Centre of Resources and Resilience CN2R, 59000 Lille, France; University of Lille, Maison de Santé Pluriprofessionnelle Lille, 59000 Lille, France.

Classifications MeSH