Quality of life and mental health in the locked-in-state-differences between patients with amyotrophic lateral sclerosis and their next of kin.
Anxiety
Caregiver burden
End of life decisions
Eye tracking
Palliative care
Quality of life
Journal
Journal of neurology
ISSN: 1432-1459
Titre abrégé: J Neurol
Pays: Germany
ID NLM: 0423161
Informations de publication
Date de publication:
Nov 2022
Nov 2022
Historique:
received:
07
03
2022
accepted:
14
06
2022
revised:
14
06
2022
pubmed:
6
7
2022
medline:
14
10
2022
entrez:
5
7
2022
Statut:
ppublish
Résumé
For both patients with amyotrophic lateral sclerosis (ALS) and their next of kin (NOK), the maintenance of quality of life (QoL) and mental health is particularly important. First studies suggest significant discrepancies between QoL reports by patients and NOK, but little is known for advanced ALS stages. To address this issue, we screened 52 ALS patients in incomplete locked-in state (iLIS). Final results were obtained for 15 couples of iLIS patients and NOK. We assessed patients' and NOK's subjective QoL, depression and anxiety and NOK's caregiver burden. Gaze controlled questionnaires allowed direct assessment of patients. Patients and NOK self-reported comparable, mostly moderate to high levels of QoL. Of note, NOK indicated stronger anxiety symptoms. Higher anxiety levels in NOK were associated with stronger caregiver burden and reduced QoL. No significant misjudgment of patient's QoL by the NOK was evident, while patients overestimated NOK's global QoL. However, NOK with severe caregiver burden and depression symptoms gave poorer estimations of patients' QoL. This relationship is relevant, considering NOK's impact on life critical treatment decisions. While the daily time NOK and patient spend together was positively correlated with NOK's QoL and mental health, this was not reversely found for the patients. Our results suggest that NOK adapt less successfully to the disease and concomitant experience of loss and point to an urgent need for specialized psychosocial support. The findings emphasize the importance of direct psychological wellbeing assessment of both patients and NOK in clinical practice, enabled by eye-tracking technology for patients in iLIS.
Identifiants
pubmed: 35790562
doi: 10.1007/s00415-022-11238-0
pii: 10.1007/s00415-022-11238-0
pmc: PMC9553779
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
5910-5925Subventions
Organisme : Bundesministerium für Bildung und Forschung
ID : 13GW0482
Organisme : Innovationsausschuss beim Gemeinsamen Bundesausschuss
ID : 01VSF16026
Informations de copyright
© 2022. The Author(s).
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