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Published in: Journal of Neural Transmission 3/2021

Open Access 01-03-2021 | Torticollis Spasticus | Neurology and Preclinical Neurological Studies - Original Article

Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia

Authors: Lisa Klingelhoefer, Maximilian Kaiser, Anna Sauerbier, Robert Untucht, Miriam Wienecke, Könül Mammadova, Björn Falkenburger, Olaf Gregor, K. Ray Chaudhuri, Heinz Reichmann

Published in: Journal of Neural Transmission | Issue 3/2021

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Abstract

Non-motor symptoms (NMS) occur in patients with cervical dystonia (CD) but with variable frequencies and impact on health-related quality of life (HRQoL). To define non-motor and motor profiles and their respective impact on HRQoL in CD patients using the newly validated Dystonia Non-Motor Symptoms Questionnaire (DNMSQuest). In an observational prospective multicentre case–control study, we enrolled 61 patients with CD and 61 age- and sex-matched healthy controls (HC) comparing demographic data, motor and non-motor symptoms and HRQoL measurements. 95% CD patients reported at least one NMS. Mean total NMS score was significantly higher in CD patients (5.62 ± 3.33) than in HC (1.74 ± 1.52; p < 0.001). Pain, insomnia and stigma were the most prevalent NMS and HRQoL was significantly impaired in CD patients compared to HC. There was strong correlation of NMS burden with HRQoL (CDQ-24: r = 0.72, EQ-5D: r = − 0.59; p < 0.001) in CD patients. Regression analysis between HRQoL and NMS suggested that emotional well-being (standardized beta = − 0.352) and pain (standardized beta = − 0.291) had a major impact on HRQoL while, in contrast motor severity had no significant impact in this model. Most NMS with the exception of pain, stigma and ADL did not correlate with motor severity. NMS are highly prevalent in CD patients and occur independent of age, sex, disease duration, duration of botulinum neurotoxin therapy and socio-economic status. Specific NMS such as emotional well-being and pain have a major impact on HRQoL and are more relevant than motor severity.
Literature
go back to reference Beck AT, Steer RA, Brown GK (1996) Manual for the Beck depression inventory-II. Psychological Corporation, San Antonio Beck AT, Steer RA, Brown GK (1996) Manual for the Beck depression inventory-II. Psychological Corporation, San Antonio
go back to reference Ben-Shlomo Y, Camfield L, Warner T (2002) What are the determinants of quality of life in people with cervical dystonia? J Neurol Neurosurg Psychiatry 72:608–614CrossRef Ben-Shlomo Y, Camfield L, Warner T (2002) What are the determinants of quality of life in people with cervical dystonia? J Neurol Neurosurg Psychiatry 72:608–614CrossRef
go back to reference Consky E, Basinski A, Belle L, Ranawaya R, Lang A (1990) Toronto western spasmodic torticollis rating scale (TWSTRS): assesment of validity and inter- rater reliability. Neurology 40(suppl):445 Consky E, Basinski A, Belle L, Ranawaya R, Lang A (1990) Toronto western spasmodic torticollis rating scale (TWSTRS): assesment of validity and inter- rater reliability. Neurology 40(suppl):445
go back to reference Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrika 16:297–334CrossRef Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrika 16:297–334CrossRef
go back to reference Group ESoDiEEC (2000) A prevalence study of primary dystonia in eight European countries. J Neurol 247:787–792CrossRef Group ESoDiEEC (2000) A prevalence study of primary dystonia in eight European countries. J Neurol 247:787–792CrossRef
go back to reference Group TE (1990) EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 16:199–208CrossRef Group TE (1990) EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 16:199–208CrossRef
go back to reference Gundel H, Wolf A, Xidara V, Busch R, Ceballos-Baumann AO (2001) Social phobia in spasmodic torticollis. J Neurol Neurosurg Psychiatry 71:499–504CrossRef Gundel H, Wolf A, Xidara V, Busch R, Ceballos-Baumann AO (2001) Social phobia in spasmodic torticollis. J Neurol Neurosurg Psychiatry 71:499–504CrossRef
go back to reference Guy W (1976) Clinical Global Impressions (028-CGI). ECDEU Assessment Manual for Psychopharmacology. In: US Department of Health EaW, Public Health Service Alcohol, Drug Abuse, and Mental Health Administration, Rockville pp 217–222 Guy W (1976) Clinical Global Impressions (028-CGI). ECDEU Assessment Manual for Psychopharmacology. In: US Department of Health EaW, Public Health Service Alcohol, Drug Abuse, and Mental Health Administration, Rockville pp 217–222
go back to reference Klingelhoefer L et al (2014) Nonmotor symptoms and focal cervical dystonia: observations from 102 patients. Basal Ganglia 4:117–120CrossRef Klingelhoefer L et al (2014) Nonmotor symptoms and focal cervical dystonia: observations from 102 patients. Basal Ganglia 4:117–120CrossRef
go back to reference Kühner C, Bürger C, Keller F, Hautzinger M (2007) Reliabilität und Validität des revidierten Beck-Depressions-Inventars (BDI-II). Befunde aus deutschsprachigen Stichproben Nervenarzt, pp 651–656 Kühner C, Bürger C, Keller F, Hautzinger M (2007) Reliabilität und Validität des revidierten Beck-Depressions-Inventars (BDI-II). Befunde aus deutschsprachigen Stichproben Nervenarzt, pp 651–656
go back to reference Kutvonen O, Dastidar P, Nurmikko T (1997) Pain in spasmodic torticollis. Pain 69:279–286CrossRef Kutvonen O, Dastidar P, Nurmikko T (1997) Pain in spasmodic torticollis. Pain 69:279–286CrossRef
go back to reference Muller J et al (2004) Craniocervical dystonia questionnaire (CDQ-24): development and validation of a disease-specific quality of life instrument. J Neurol Neurosurg Psychiatry 75:749–753CrossRef Muller J et al (2004) Craniocervical dystonia questionnaire (CDQ-24): development and validation of a disease-specific quality of life instrument. J Neurol Neurosurg Psychiatry 75:749–753CrossRef
go back to reference Papathanasiou I, MacDonald L, Whurr R, Jahanshahi M (2001) Perceived stigma in spasmodic torticollis. Mov Disord 16:280–285CrossRef Papathanasiou I, MacDonald L, Whurr R, Jahanshahi M (2001) Perceived stigma in spasmodic torticollis. Mov Disord 16:280–285CrossRef
go back to reference Reichel G (2013) Therapieleitfaden Spastik-Dystonien, 5th edn. UNI-MED, Bremen Reichel G (2013) Therapieleitfaden Spastik-Dystonien, 5th edn. UNI-MED, Bremen
go back to reference Slawek J et al (2007) Factors affecting the health-related quality of life of patients with cervical dystonia and the impact of botulinum toxin type A injections. Funct Neurol 22:95–100PubMed Slawek J et al (2007) Factors affecting the health-related quality of life of patients with cervical dystonia and the impact of botulinum toxin type A injections. Funct Neurol 22:95–100PubMed
Metadata
Title
Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia
Authors
Lisa Klingelhoefer
Maximilian Kaiser
Anna Sauerbier
Robert Untucht
Miriam Wienecke
Könül Mammadova
Björn Falkenburger
Olaf Gregor
K. Ray Chaudhuri
Heinz Reichmann
Publication date
01-03-2021
Publisher
Springer Vienna
Published in
Journal of Neural Transmission / Issue 3/2021
Print ISSN: 0300-9564
Electronic ISSN: 1435-1463
DOI
https://doi.org/10.1007/s00702-020-02274-z

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