Top

Published in:

Open Access 15-10-2023 | Dystonia | Original Communication

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

Authors: Johanna Junker, James Hall, Brian D. Berman, Marie Vidailhet, Emmanuel Roze, Tobias Bäumer, Irene A. Malaty, Aparna Wagle Shukla, Joseph Jankovic, Stephen G. Reich, Alberto J. Espay, Kevin R. Duque, Neepa Patel, Joel S. Perlmutter, H. A. Jinnah, Valerie Brandt, Norbert Brüggemann, Dystonia Coalition Study Group

Published in: Journal of Neurology | Issue 2/2024

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 2 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 1 year.

Results

Depressive symptoms at baseline predicted lower HR-QoL on all subscales after 2 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 2 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 2 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 1 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.

Available only for authorised users

Bailey GA, Martin E, Peall KJ (2022) Cognitive and Neuropsychiatric Impairment in Dystonia. Curr Neurol Neurosci Rep 22:699–708. https://doi.org/10.1007/s11910-022-01233-3CrossRefPubMedCentralPubMed

Berman BD, Junker J, Shelton E, Sillau SH, Jinnah HA, Perlmutter JS, Espay AJ, Jankovic J, Vidailhet M, Bonnet C, Ondo W, Malaty IA, Rodríguez R, McDonald WM, Marsh L, Zurowski M, Bäumer T, Brüggemann N (2017) Psychiatric associations of adult-onset focal dystonia phenotypes. J Neurol Neurosurg Psychiatry 88:595–602. https://doi.org/10.1136/jnnp-2016-315461CrossRefPubMed

Slawek J, Friedman A, Potulska A, Krystkowiak P, Gervais C, Banach M, Ochudlo S, Budrewicz S, Reclawowicz D, Rynkowski M, Opala G (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

Lewis L, Butler A, Jahanshahi M (2008) Depression in focal, segmental and generalized dystonia. J Neurol 255:1750–1755. https://doi.org/10.1007/s00415-008-0020-xCrossRefPubMed

Gundel H, Wolf A, Xidara V, Busch R, Ceballos-Baumann AO (2001) Social phobia in spasmodic torticollis. J Neurol Neurosurg Psychiatry 71:499–504CrossRefPubMedCentralPubMed

Kuyper DJ, Parra V, Aerts S, Okun MS, Kluger BM (2011) Nonmotor manifestations of dystonia: a systematic review. Mov Disord 26:1206–1217. https://doi.org/10.1002/mds.23709CrossRefPubMedCentralPubMed

Martino D, Brander G, Svenningsson P, Larsson H, de la Cruz LF (2020) Association and Familial Coaggregation of Idiopathic Dystonia with Psychiatric Outcomes. Mov Disord. https://doi.org/10.1002/mds.28257CrossRefPubMed

Junker J, Berman BD, Hall J, Wahba DW, Brandt V, Perlmutter JS, Jankovic J, Malaty IA, Wagle Shukla A, Reich SG, Espay AJ, Duque KR, Patel N, Roze E, Vidailhet M, Jinnah HA, Brüggemann N (2021) Quality of life in isolated dystonia: non-motor manifestations matter. J Neurol Neurosurg Psychiatry 92:622–628. https://doi.org/10.1136/jnnp-2020-325193CrossRef

Ben-Shlomo Y, Camfield L, Warner T, group Ec, (2002) What are the determinants of quality of life in people with cervical dystonia? J Neurol Neurosurg Psychiatry 72:608–614CrossRefPubMedCentralPubMed

10.

O’Connor S, Hevey D, O’Keeffe F (2023) Illness Perceptions, Coping, Health-Related Quality of Life and Psychological Outcomes in Cervical Dystonia. J Clin Psychol Med Settings 30:129–142. https://doi.org/10.1007/s10880-022-09851-2CrossRefPubMed

11.

Liang Y, Lin J, Hou Y, Zhang L, Ou R, Li C, Wei Q, Cao B, Liu K, Jiang Z, Yang T, Yang J, Zhang M, Kang S, Xiao Y, Jiang Q, Yang J, Song W, Chen X, Zhao B, Wu Y, Shang H (2022) Health-Related Quality of Life in Cervical Dystonia Using EQ-5D-5L: A Large Cross-Sectional Study in China. Front Neurol 13:895272. https://doi.org/10.3389/fneur.2022.895272CrossRefPubMedCentralPubMed

12.

Yi M, Li J, Liu G, Ou Z, Liu Y, Li J, Chen Y, Guo Y, Wang Y, Zhang W, Zeng J, Dang C (2022) Mental health and quality of life in patients with craniofacial movement disorders: A cross-sectional study. Front Neurol 13:938632. https://doi.org/10.3389/fneur.2022.938632CrossRefPubMedCentralPubMed

13.

Girach A, Vinagre Aragon A, Zis P (2018) Quality of life in idiopathic dystonia: a systematic review. J Neurol. https://doi.org/10.1007/s00415-018-9119-xCrossRefPubMedCentralPubMed

14.

Rafee S, Al-Hinai M, Douglas G, Ndukwe I, Hutchinson M (2023) Mood symptoms in cervical dystonia: Relationship with motor symptoms and quality of life. Clin Park Relat Disord 8:100186. https://doi.org/10.1016/j.prdoa.2023.100186CrossRefPubMedCentralPubMed

15.

Weiss D, Hieber L, Sturm J, Bortlein A, Mayr I, Appy M, Kuhnler B, Buchthal J, Dippon C, Arnold G, Wachter T (2017) Botulinumtoxin Improves both Generic and Disease-Specific Quality of Life in Cervical Dystonia. Front Neurol 8:561. https://doi.org/10.3389/fneur.2017.00561CrossRefPubMedCentralPubMed

16.

Muller J, Kemmler G, Wissel J, Schneider A, Voller B, Grossmann J, Diez J, Homann N, Wenning GK, Schnider P, Poewe W, Austrian Botulinum T, Dystonia Study G (2002) The impact of blepharospasm and cervical dystonia on health-related quality of life and depression. J Neurol 249:842–846. https://doi.org/10.1007/s00415-002-0733-1CrossRef

17.

Mordin M, Masaquel C, Abbott C, Copley-Merriman C (2014) Factors affecting the health-related quality of life of patients with cervical dystonia and impact of treatment with abobotulinumtoxinA (Dysport): results from a randomised, double-blind, placebo-controlled study. BMJ Open 4:e005150. https://doi.org/10.1136/bmjopen-2014-005150CrossRefPubMedCentralPubMed

18.

Hilker R, Schischniaschvili M, Ghaemi M, Jacobs A, Rudolf J (2001) Health related quality of life is improved by botulinum neurotoxin type A in long term treated patients with focal dystonia. J Neurol Neurosurg Psychiatry 71:193–199CrossRefPubMedCentralPubMed

19.

Biuk D, Karin AA, Matic S, Barac J, Benasic T, Stiglmayer N (2013) Quality of life in patients with blepharospasm. Coll Antropol 37:29–33PubMed

20.

Yoshida K (2022) Effects of Botulinum Toxin Therapy on Health-Related Quality of Life Evaluated by the Oromandibular Dystonia Rating Scale. Toxins 14 https://doi.org/10.3390/toxins14100656

21.

Moriarty A, Rafee S, Ndukwe I, O’Riordan S, Hutchinson M (2022) Longitudinal Follow-Up of Mood in Cervical Dystonia and Influence on Age at Onset. Movement disorders clinical practice 9:614–618. https://doi.org/10.1002/mdc3.13457CrossRefPubMedCentralPubMed

22.

McHorney CA, Ware JE Jr, Raczek AE (1993) The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 31:247–263CrossRefPubMed

23.

Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 52:69–77CrossRefPubMed

24.

Rytwinski NK, Fresco DM, Heimberg RG, Coles ME, Liebowitz MR, Cissell S, Stein MB, Hofmann SG (2009) Screening for social anxiety disorder with the self-report version of the Liebowitz Social Anxiety Scale. Depress Anxiety 26:34–38. https://doi.org/10.1002/da.20503CrossRefPubMed

25.

Burke RE, Fahn S, Marsden CD, Bressman SB, Moskowitz C, Friedman J (1985) Validity and reliability of a rating scale for the primary torsion dystonias. Neurology 35:73–77CrossRefPubMed

26.

Muthén L, Muthén B (1998–2012; Seventh Edition) Mplus User’s Guide. Los Angeles, CA

27.

Huck SWCW, Bounds WG (1974) 6th edition) Reading statistics and research. Harper and Row

28.

Tomarken AJ, Waller NG (2003) Potential problems with “well fitting” models. J Abnorm Psychol 112:578–598. https://doi.org/10.1037/0021-843X.112.4.578CrossRefPubMed

29.

Pirio Richardson S, Wegele AR, Skipper B, Deligtisch A, Jinnah HA, Dystonia Coalition I (2017) Dystonia treatment: Patterns of medication use in an international cohort. Neurology 88:543–550. https://doi.org/10.1212/WNL.0000000000003596CrossRefPubMedCentralPubMed

30.

Page D, Butler A, Jahanshahi M (2007) Quality of life in focal, segmental, and generalized dystonia. Mov Disord 22:341–347. https://doi.org/10.1002/mds.21234CrossRefPubMed

31.

Basurovic N, Svetel M, Pekmezovic T, Kostic VS (2012) Evaluation of the quality of life in patients with segmental dystonia. Vojnosanitetski pregled Military-medical and pharmaceutical review 69:759–764CrossRefPubMed

32.

Hutchinson M, McGovern EM, Narasimham S, Beck R, Reilly RB, Walsh CD, Malone KM, Tijssen MAJ, O’Riordan S (2018) The premotor syndrome of cervical dystonia: Disordered processing of salient environmental stimuli. Mov Disord 33:232–237. https://doi.org/10.1002/mds.27229CrossRefPubMed

33.

Treede RD (2002) Spinothalamic and thalamocortical nociceptive pathways. J Pain 3:109–112;discussion 113–104. https://doi.org/10.1054/jpai.2002.122951

34.

Zhang L, Hou Y, Lin J, Yang J, Cao B, Wei Q, Ou R, Shang H (2022) Comprehensive analysis of non-motor symptoms and their association with quality of life in Writer’s cramp. Parkinsonism Relat Disord 100:37–40. https://doi.org/10.1016/j.parkreldis.2022.05.025CrossRefPubMed

35.

Quagliato EM, Carelli EF, Viana MA (2010) A prospective, randomized, double-blind study comparing the efficacy and safety of type a botulinum toxins botox and prosigne in the treatment of cervical dystonia. Clin Neuropharmacol 33:22–26. https://doi.org/10.1097/WNF.0b013e3181c46f48CrossRefPubMed

36.

Cano SJ, Warner TT, Linacre JM, Bhatia KP, Thompson AJ, Fitzpatrick R, Hobart JC (2004) Capturing the true burden of dystonia on patients: the Cervical Dystonia Impact Profile (CDIP-58). Neurology 63:1629–1633. https://doi.org/10.1212/01.wnl.0000142962.11881.26CrossRefPubMed

37.

Hays RD, Sherbourne CD, Mazel RM (1993) The RAND 36-Item Health Survey 1.0. Health Econ 2:217–227CrossRefPubMed

38.

Queiroz MA, Chien HF, Sekeff-Sallem FA, Barbosa ER (2012) Physical therapy program for cervical dystonia: a study of 20 cases. Funct Neurol 27:187–192PubMed

39.

Zetterberg L, Halvorsen K, Farnstrand C, Aquilonius SM, Lindmark B (2008) Physiotherapy in cervical dystonia: six experimental single-case studies. Physiother Theory Pract 24:275–290. https://doi.org/10.1080/09593980701884816CrossRefPubMed

40.

Faircloth S, Reid S (2006) A cognitive−behavioural approach to the management of idiopathic cervical dystonia. J Behav Ther Exp Psychiatry 37:239–246. https://doi.org/10.1016/j.jbtep.2005.07.003CrossRefPubMed

41.

Wadon ME, MacIver C, Winter M, Peall KJ (2021) Internet-based cognitive behavioural therapy as a feasible treatment of adult-onset, focal, isolated, idiopathic cervical dystonia. Clin Park Relat Disord 5:100121. https://doi.org/10.1016/j.prdoa.2021.100121CrossRefPubMedCentralPubMed

42.

Loudovici-Krug D, Derlien S, Best N, Gunther A (2022) Physiotherapy for Cervical Dystonia: A Systematic Review of Randomised Controlled Trials. Toxins 14:784. https://doi.org/10.3390/toxins14110784CrossRefPubMedCentralPubMed

43.

Costanzo M, Belvisi D, Berardelli I, Maraone A, Baione V, Ferrazzano G, Cutrona C, Leodori G, Pasquini M, Conte A, Fabbrini G, Defazio G, Berardelli A (2021) Effect of Botulinum Toxin on Non-Motor Symptoms in Cervical Dystonia. Toxins 13 https://doi.org/10.3390/toxins13090647

Title: Longitudinal predictors of health-related quality of life in isolated dystonia
Authors: Johanna Junker
James Hall
Brian D. Berman
Marie Vidailhet
Emmanuel Roze
Tobias Bäumer
Irene A. Malaty
Aparna Wagle Shukla
Joseph Jankovic
Stephen G. Reich
Alberto J. Espay
Kevin R. Duque
Neepa Patel
Joel S. Perlmutter
H. A. Jinnah
Valerie Brandt
Norbert Brüggemann
Dystonia Coalition Study Group
Publication date: 15-10-2023
Publisher: Springer Berlin Heidelberg
Keywords: Dystonia
Botulinum Toxin
Social Anxiety Disorder
Generalised Anxiety Disorder
Mood Disorders
Affective Disorder
Tremor
Anxiety
Torticollis Spasticus
Published in: Journal of Neurology / Issue 2/2024
Print ISSN: 0340-5354
Electronic ISSN: 1432-1459
DOI: https://doi.org/10.1007/s00415-023-12022-4

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Objective

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Objective

Methods

Results

Conclusion

Please log in to get access to this content

Other articles of this Issue 2/2024

Disease survival and progression in TARDBP ALS patients from Sardinia, Italy

Distal hereditary motor neuronopathy as a new phenotype associated with variants in BAG3

Rasmussen’s syndrome treated with anakinra

Novel biomarkers and neuroimaging techniques in Parkinson’s disease

Cardiac sympathetic “morbidity” might reflect the neurobiology of early Parkinson’s disease

The comorbidity and co-medication profile of patients with progressive supranuclear palsy