Advertisement

The relationship of dystonia and choreoathetosis with activity, participation and quality of life in children and youth with dyskinetic cerebral palsy

Published:September 23, 2016DOI:https://doi.org/10.1016/j.ejpn.2016.09.003

      Highlights

      • First study to relate dystonia and choreoathetosis with activity, participation and QOL.
      • Good relationship between dystonia and activity, participation and QOL.
      • No relationship was found with choreoathetosis.
      • Dystonia has a higher impact on activity, participation and QOL in dyskinetic CP than choreoathetosis.

      Abstract

      Aim

      To relate dystonia and choreoathetosis with activity, participation and quality of life (QOL) in children and youth with dyskinetic Cerebral Palsy (CP).

      Methods

      Fifty-four participants with dyskinetic CP (mean age 14y6m, SD 4y2m, range 6–22y) were included. The Dyskinesia Impairment Scale (DIS) was used to evaluate dystonia and choreoathetosis. Activity, participation and quality of life (QOL) were assessed with the Gross Motor Function Measure (GMFM), the Functional Mobility Scale (FMS), the Jebsen-Taylor Hand Function Test (JTT), the ABILHAND-Kids Questionnaire (ABIL-K), the Life Habits Kids (LIFE-H) and the Quality of Life Questionnaire for children with CP (CP-QOL). Spearman's rank correlation coefficient (rs) was used to assess the relationship between the movement disorders and activity, participation and QOL measures.

      Results

      Significant negative correlations were found between dystonia and the activity scales with Spearman's rank correlation coefficient (rs) varying between −0.65 (95% CI = −0.78 to −0.46) and −0.71 (95% CI = −0,82 to −0.55). Correlations were also found with the LIFE-H (rs = −0.43; 95%CI = −0.64 to −0.17) and the CP-QOL (rs = −0.32; 95%CI = −0.56 to −0.03). As far as choreoathetosis is concerned, no or only weak relationships were found with the activity, participation and quality of life scales.

      Interpretation

      This cross-sectional study is the first to examine the relationship of dystonia and choreoathetosis in dyskinetic CP with the level of activity, participation and QOL. The results revealed dystonia has a higher impact on activity, participation and quality of life than choreoathetosis. These findings seem to suggest it is necessary to first focus on dystonia reducing intervention strategies and secondly on choreoathetosis.

      Keywords

      Abbreviations:

      CP (Cerebral Palsy), GMFCS (Gross Motor Function Classification System), MACS (Manual Ability Classification System), BFMF (Bimanual Fine Motor Function Classification), DIS (Dyskinesia Impairment Scale), GMFM (Gross Motor Function Measure), FMS (Functional Mobility Scale), JTT (Jebsen-Taylor Hand Function Test), CP-QOL (Quality of Life Questionnaire for children with CP), ABIL-K (ABILHAND-Kids Questionnaire)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to European Journal of Paediatric Neurology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Himmelmann K.
        • Mc Manus V.
        • Hagberg G.
        • Uvebrant P.
        • Krägeloh-Mann I.
        • Cans C.
        Dyskinetic cerebral palsy in Europe: trends in prevalence and severity.
        Arch Dis Child. 2009; 94: 921-926
        • Monbaliu E.
        • De Cock P.
        • Ortibus E.
        • Heyrman L.
        • Klingels K.
        • Feys H.
        Clinical patterns of dystonia and choreoathetosis in participants with dyskinetic cerebral palsy.
        Dev Med Child Neurol. 2016; 58: 138-144
        • Rosenbaum P.
        • Steward D.
        The World Health Organization international classification of functioning, disability, and health: a model to guide clinical thinking, practice and research in the field of cerebral palsy.
        Semin Pediatr Neurol. 2004; 11: 5-10
        • Himmelman K.
        • Hagberg G.
        • Wiklund L.M.
        • Eek M.N.
        • Uvebrant P.
        Dyskinetic cerebral Palsy: a population-based study of children born between 1991 and 1998.
        Dev Med Child Neurol. 2007; 49: 246-251
        • Arner M.
        • Eliasson A.C.
        • Nicklasson S.
        Hand function in cerebral palsy. Report of 367 children in a population-based longitudinal health care program.
        JHS. 2008; 33 (1377–1347)
        • Palisano R.
        • Rosenbaum P.
        • Walter S.
        • Russell D.
        • Wood E.
        • Galuppi B.
        Development and reliability of a system to classify gross motor function in children with cerebral palsy.
        Dev Med Child Neurol. 1997; 39: 214-223
        • Eliasson A.C.
        • Krumlinde-Sundholm L.
        • Rösblad B.
        • Beckung E.
        • Arner M.
        • Öhrvall A.M.
        • Rosenbaum P.
        The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability.
        Dev Med Child Neurol. 2006; 48: 549-554
        • Beckung E.
        • Hagberg G.
        Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy.
        Dev Med Child Neurol. 2002; 44: 309-316
        • Himmelman K.
        • Beckung E.
        • Hagberg G.
        • Uvebrant P.
        Gross and fine motor function and accompanying impairments in cerebral palsy.
        Dev Med Child Neurol. 2006; 48: 417-423
        • Østensjø S.
        • Carlberg E.
        • Vøllestad N.
        Motor impairments in young children with cerebral palsy: relationship to gross motor function and everyday activities.
        Dev Med Child Neurol. 2004; 46: 580-589
        • Beckung E.
        • Carlsson G.
        • Carlsdotter S.
        • Uvebrant P.
        The natural history of gross motor development in children with cerebral palsy aged 1 to 15 years.
        Dev Med Child Neurol. 2007; 49: 751-756
        • Schenker R.
        • Coster W.
        • Parush S.
        Participation and activity performance of students with cerebral palsy within the school environment.
        Dis Rehab. 2005; 27: 539-552
        • Shelly A.
        • Davis E.
        • Waters E.
        • et al.
        The relationship between quality of life and functioning for children with cerebral palsy.
        Dev Med Child Neurol. 2008; 50: 199-203
        • Imms C.
        Children with cerebral palsy participate: a review of the literature.
        Disabil Rehabil. 2008; 30: 1867-1884
        • Monbaliu E.
        • Ortibus E.
        • De Cat
        • et al.
        The Dyskinesia Impairment Scale: a new instrument to measure dystonia and choreoathetosis in dyskinetic cerebral palsy.
        Dev Med Child Neurol. 2012; 54: 278-283
        • Krägeloh-Mann I.
        • Petruch U.
        • Weber P.-M.
        SCPE reference and training manual (R&TM).
        Surveillance of Cerebral Palsy in Europe, Grenoble2005
        • Russel D.
        • Rosenbaum P.
        • Cadman D.
        • Gowland C.
        • Hardy S.
        • Jarvis S.
        The gross motor function measure: a means to evaluate the effects of physical therapy.
        Dev Med Child Neurol. 1997; 39: 214-223
        • Jebson R.
        • Taylor N.
        • Trieschmann R.
        • Trotter M.
        • Howard L.
        An objective and standardized test of hand function.
        Arch Phys Med Rehabil. 1969; : 311-319
        • Graham H.
        • Harvey A.
        • Rodda J.
        • Nattrass G.R.
        • Pirpiris M.
        The functional mobility scale (FMS).
        J Pediatr Orthop. 2004; 24: 514-520
        • Arnould C.
        • Penta A.
        • Renders A.
        • Thonnard J.L.
        ABILHAND-Kids: a measure of manual ability in children with cerebral palsy.
        Neurology. 2004; 63: 1045-1052
        • Noreau L.
        • Lepage C.
        • Boissiere L.
        • et al.
        Measuring participation in children with disabilities using the assessment of life habits.
        Dev Med Child Neurol. 2007; 49: 666-671
        • Waters E.
        • Davis E.
        • Mackinnon A.
        Psychometric properties of the quality of life questionnaire for children with CP.
        Dev Med Child Neurol. 2007; 49: 49-55
        • Portney L.
        • Watkins M.
        Foundations of clinical research: applications to practice.
        3rd ed. Pearson/Prentice Hall, Upper Saddle River, New Jersey2009
        • Klingels K.
        • Demeyere I.
        • Jaspers E.
        • et al.
        Upper limb impairments and their impact on activity measures in children with unilateral cerebral palsy.
        Eur J Paediatr Neurol. 2012; 16: 475-484
        • Sanger T.
        • Chen D.
        • Fehlings D.
        • et al.
        Definition and classification of hyperkinetic movements in childhood.
        Mov Disord. 2010; 25: 1538-1549
        • Haley S.
        • Coster W.
        • Faas R.
        A content validity study of the pediatric evaluation of disability inventory.
        Ped Phys Ther. 1991; 3: 177-184
        • Öhrvall A.M.
        • Eliasson A.C.
        • Löwing K.
        • Ödman P.
        • Krumlinde-Sundholm L.
        Self-care and mobility skills in children with cerebral palsy, related to their manual ability and gross motor function classifications.
        Dev Med Child Neurol. 2010; 52: 1048-1055
        • Martinez-Biarge M.
        • Diez-Sabastion J.
        • Courtney J.
        • et al.
        Feeding and communication impairment in infants with grey matter lesions following perinatal hypoxic-ischaemic injury.
        Eur J Paediatr Neurol. 2012; 16: 688-696
        • Roubertie A.
        • Mariani L.
        • Fernandez-Alvaraz E.
        • Doummar D.
        • Roze E.
        Treatment for dystonia in childhood.
        Eur J Pediatr Neurol. 2012; 19: 1292-1299
        • Bonouvrié L.
        • Van Schie P.
        • Becher J.
        • Van Ouwerkerk W.
        • Reeuwijk A.
        • Vermeulen J.
        Effects of intrathecal baclofen on daily care in children with secondary generalized dystonia: a pilot study.
        Eur J Paediatr Neurol. 2011; 15: 539-543
        • Koy A.
        • Hellmich M.
        • Pauls A.
        • et al.
        Effect of deep brain stimulation in dyskinetic cerebral palsy: a meta-analysis.
        Mov Disord. 2013; 28: 647-654
        • Lumsden D.E.
        • Gimeno H.
        • Tustin K.
        • Kaminska M.
        • Lin J.-P.
        Interventional studies in childhood dystonia do not address the concerns of children and their carers.
        Eur J Paediatr Neurol. 2015; 19: 327-336
        • Davis E.
        • Mackinnon A.
        • Davern M.
        • et al.
        Description and psychometric properties of the CP QOL-teen: a quality of life questionnaire for adolescents with cerebral palsy.
        Res Dev Disabil. 2013; 34: 344-352