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)
Sabine Bayen
(1, 2)
,
Jean Heutte
(3)
,
Jean-Charles Vanderbecken
(1)
,
Caroline Moreau
(2)
,
Luc Defebvre
(2)
,
Romain Billot
(4)
,
Valentine Guiton
(5)
,
Christophe Lemey
(6)
,
Heidrun Lingner
(7)
,
Wassil Messaadi
(1)
,
David Devos
(2)
,
Nassir Messaadi
(1, 8, 9)
1
Department of General Practice, University of Lille, 59000 Lille
2 LilNCog - Lille Neurosciences & Cognition - U 1172
3 Trigone-CIREL
4 Department LUSSI, IMT, UMR CNRS 6285 Lab-STICC, University of Brest, Brest
5 University of Brest, 2PE, CHU of Brest, Brest
6 Department of Psychiatry, UAMP, CHU Brest, University of Brest, Brest
7 Department of General Practice, Medical School Hannover, University of Hannover, Hannover
8 University of Lille, Maison de Santé Pluriprofessionnelle Lille, 59000 Lille
9 CN2R - Centre National de Ressources et de Résilience [Lille]
2 LilNCog - Lille Neurosciences & Cognition - U 1172
3 Trigone-CIREL
4 Department LUSSI, IMT, UMR CNRS 6285 Lab-STICC, University of Brest, Brest
5 University of Brest, 2PE, CHU of Brest, Brest
6 Department of Psychiatry, UAMP, CHU Brest, University of Brest, Brest
7 Department of General Practice, Medical School Hannover, University of Hannover, Hannover
8 University of Lille, Maison de Santé Pluriprofessionnelle Lille, 59000 Lille
9 CN2R - Centre National de Ressources et de Résilience [Lille]
Sabine Bayen
- Fonction : Auteur
- PersonId : 1114623
Jean Heutte
- Fonction : Auteur
- PersonId : 11965
- IdHAL : jean-heutte
- ORCID : 0000-0002-2646-3658
- IdRef : 158962710
Caroline Moreau
- Fonction : Auteur
- PersonId : 181903
- IdHAL : caroline-moreau
- ORCID : 0000-0002-5503-4078
- IdRef : 129380474
Christophe Lemey
- Fonction : Auteur
- PersonId : 1097915
- IdHAL : christophe-lemey
David Devos
- Fonction : Auteur
- PersonId : 13309
- IdHAL : david-devos
- ORCID : 0000-0002-2417-799X
- IdRef : 091996309
Résumé
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.
Format du dépôt | Notice |
---|---|
Type de dépôt | Article dans une revue (data paper) |
Titre |
en
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)
|
Résumé |
en
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.
|
Auteur(s) |
Sabine Bayen
1, 2
, Jean Heutte
3
, Jean-Charles Vanderbecken
1
, Caroline Moreau
2
, Luc Defebvre
2
, Romain Billot
4
, Valentine Guiton
5
, Christophe Lemey
6
, Heidrun Lingner
7
, Wassil Messaadi
1
, David Devos
2
, Nassir Messaadi
1, 8, 9
1
Department of General Practice, University of Lille, 59000 Lille
( 1173946 )
- France
2
LilNCog -
Lille Neurosciences & Cognition - U 1172
( 1049721 )
- (ex-JPARC) --
Université de Lille
- Faculté de Médecine - Bâtiment Biserte
- 1 place de Verdun
- 59045 Lille Cedex
- Tél : +33 (0)3 20 29 88 50
- France
3
Trigone-CIREL
( 39708 )
- France
4
Department LUSSI, IMT, UMR CNRS 6285 Lab-STICC, University of Brest, Brest
( 1173950 )
- France
5
University of Brest, 2PE, CHU of Brest, Brest
( 1173951 )
- France
6
Department of Psychiatry, UAMP, CHU Brest, University of Brest, Brest
( 1173952 )
- France
7
Department of General Practice, Medical School Hannover, University of Hannover, Hannover
( 1173953 )
- Allemagne
8
University of Lille, Maison de Santé Pluriprofessionnelle Lille, 59000 Lille
( 1173965 )
- France
9
CN2R -
Centre National de Ressources et de Résilience [Lille]
( 1049724 )
- 103 Bd de la Liberté -
Lille 59000
- France
|
Langue du document |
Anglais
|
Nom de la revue |
|
Date de publication électronique |
2023-09-19
|
URL éditeur |
https://doi.org/10.1016/j.neurol.2023.07.009
|
Volume |
179
|
Numéro |
8
|
Page/Identifiant |
1-9
|
Date de publication |
2023-09-19
|
Vulgarisation |
Non
|
Comité de lecture |
Oui
|
Audience |
Internationale
|
Domaine(s) |
|
Mots-clés (Mesh) |
|
Mots-clés (JEL) |
|
Mots-clés |
en
Parkinson's disease, Patient's perspective, Burden assessment, Cross-check, Translation
|
DOI | 10.1016/j.neurol.2023.07.009 |
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