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Longitudinal predictors of health-related quality of life in isolated dystonia

Longitudinal predictors of health-related quality of life in isolated dystonia
Longitudinal predictors of health-related quality of life in isolated dystonia
Objective: to determine longitudinal predictors of health-related quality of life (HR-QoL) in an international multicenter cohort of patients with isolated dystonia.

Methods: out of 603 dystonia patients prospectively enrolled in the Natural History Dystonia Coalition study, 155 were assessed three times within two years for HR-QoL, symptoms of depression, generalized anxiety disorder (GAD), and social anxiety disorder (SAD), as well as dystonia severity and dystonic tremor. In addition, the impact of botulinum neurotoxin (BoNT) injections on HR-QoL was evaluated after one year.

Results: depressive symptoms at baseline predicted lower HR-QoL on all subscales after two years (all p ≤ 0.001). Higher GAD scores at baseline predicted lower HR-QoL related to general health, pain and emotional well-being, whereas higher SAD scores predicted higher pain-related QoL after two years (all p≤ 0.006). Dystonia severity at baseline predicted social functioning (p = 0.002). Neither dystonic tremor, age or sex predicted HR-QoL at two years. Two latent categories were revealed across the three-time points: Category 1 with higher total HR-QoL scores (mean HR-QoL = 74.4% ± 16.1), susceptible to symptoms of depression and SAD, and Category 2 with lower total HR-QoL scores (mean HR-QoL = 45.5% ± 17.6), susceptible to symptoms of GAD. HR-QoL improved over the course of one year irrespective of the use of BoNT.

Conclusion: the longitudinal impact of psychiatric symptoms on HR-QoL emphasizes the importance of incorporating mental health treatment, in particular also the therapy of anxiety disorders, into treatment regimens for dystonia.
Anxiety, BoNT, Depression, Dystonia, Quality of life
0340-5354
Junker, Johanna
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Hall, James
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Berman, B.D.
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Vidailhet, M.
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Roze, Emmanuel
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Bäumer, Tobias
e384474b-39b8-4814-82c7-f51f214bc323
Malaty, Irene A.
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Shukla, A.W.
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Jankovic, J.
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Reich, S.G.
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Espay, Alberto J.
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Duque, K.R.
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Patel, N.
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Perlmutter, J.S.
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Jinnah, H.A.
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Brandt, Valerie
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Brüggemann, Norbert
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Dystonia Coalition Study Group
Junker, Johanna
fb0ba75f-9dfd-4045-ae04-ac2ad02b1a5c
Hall, James
29e17a2b-dca0-4b91-be02-2ace4abaa6c4
Berman, B.D.
271ee7e4-2f38-460e-bb41-c7003a99a513
Vidailhet, M.
2c1fa9ee-cf3e-45c3-8e73-14f1b11d8272
Roze, Emmanuel
58275f5c-3935-43c1-967e-c8f2a6596241
Bäumer, Tobias
e384474b-39b8-4814-82c7-f51f214bc323
Malaty, Irene A.
1dbd03a1-fabe-4b91-a364-6edb5f6c5781
Shukla, A.W.
ed7f7065-43f6-4b94-bdc1-855e49f7e913
Jankovic, J.
90b1c386-b9fb-4c5d-9841-b71a9445edce
Reich, S.G.
daeba674-a7c4-4d12-93a0-3aaf7697c072
Espay, Alberto J.
b1c7c658-d11d-4134-9995-53ef156adf27
Duque, K.R.
b4f40968-6449-410f-a0a3-6b401df35b93
Patel, N.
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Perlmutter, J.S.
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Jinnah, H.A.
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Brandt, Valerie
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Brüggemann, Norbert
897a113b-3470-4f24-b434-11e838b94ab1

Junker, Johanna, Hall, James, Berman, B.D., Brandt, Valerie and Brüggemann, Norbert , Dystonia Coalition Study Group (2023) Longitudinal predictors of health-related quality of life in isolated dystonia. Journal of Neurology. (doi:10.1007/s00415-023-12022-4).

Record type: Article

Abstract

Objective: to determine longitudinal predictors of health-related quality of life (HR-QoL) in an international multicenter cohort of patients with isolated dystonia.

Methods: out of 603 dystonia patients prospectively enrolled in the Natural History Dystonia Coalition study, 155 were assessed three times within two years for HR-QoL, symptoms of depression, generalized anxiety disorder (GAD), and social anxiety disorder (SAD), as well as dystonia severity and dystonic tremor. In addition, the impact of botulinum neurotoxin (BoNT) injections on HR-QoL was evaluated after one year.

Results: depressive symptoms at baseline predicted lower HR-QoL on all subscales after two years (all p ≤ 0.001). Higher GAD scores at baseline predicted lower HR-QoL related to general health, pain and emotional well-being, whereas higher SAD scores predicted higher pain-related QoL after two years (all p≤ 0.006). Dystonia severity at baseline predicted social functioning (p = 0.002). Neither dystonic tremor, age or sex predicted HR-QoL at two years. Two latent categories were revealed across the three-time points: Category 1 with higher total HR-QoL scores (mean HR-QoL = 74.4% ± 16.1), susceptible to symptoms of depression and SAD, and Category 2 with lower total HR-QoL scores (mean HR-QoL = 45.5% ± 17.6), susceptible to symptoms of GAD. HR-QoL improved over the course of one year irrespective of the use of BoNT.

Conclusion: the longitudinal impact of psychiatric symptoms on HR-QoL emphasizes the importance of incorporating mental health treatment, in particular also the therapy of anxiety disorders, into treatment regimens for dystonia.

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Accepted/In Press date: 21 September 2023
Published date: 15 October 2023
Additional Information: Funding Information: Open Access funding enabled and organized by Projekt DEAL. This work was supported in part by grants to the Dystonia Coalition, a consortium of the Rare Diseases Clinical Research Network (RDCRN) that is supported by the Office of Rare Diseases Research (ORDR) at the National Center for Advancing Clinical and Translational Studies (NCATS; U54 TR001456) in collaboration with the National Institute for Neurological Diseases and Stroke (NINDS; U54 NS065701 and U54 NS116025).
Keywords: Anxiety, BoNT, Depression, Dystonia, Quality of life

Identifiers

Local EPrints ID: 482803
URI: http://eprints.soton.ac.uk/id/eprint/482803
ISSN: 0340-5354
PURE UUID: 77da6edc-1ef9-4ccb-8622-ac3ac0948024
ORCID for James Hall: ORCID iD orcid.org/0000-0001-8002-0922

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Date deposited: 12 Oct 2023 16:48
Last modified: 18 Mar 2024 03:41

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Contributors

Author: Johanna Junker
Author: James Hall ORCID iD
Author: B.D. Berman
Author: M. Vidailhet
Author: Emmanuel Roze
Author: Tobias Bäumer
Author: Irene A. Malaty
Author: A.W. Shukla
Author: J. Jankovic
Author: S.G. Reich
Author: Alberto J. Espay
Author: K.R. Duque
Author: N. Patel
Author: J.S. Perlmutter
Author: H.A. Jinnah
Author: Valerie Brandt
Author: Norbert Brüggemann
Corporate Author: Dystonia Coalition Study Group

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