Outcome measures for children with movement disorders

Pagliano, Emanuela; Baranello, Giovanni; Masson, Riccardo; Foscan, Maria; Arnoldi, Maria Teresa; Marchi, Alessia; Aprile, Giorgia; Pantaleoni, Chiara

doi:10.1016/j.ejpn.2018.01.014

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European Journal of Paediatric Neurology

2018

DOI: 10.1016/j.ejpn.2018.01.014

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Outcome measures for children with movement disorders

Emanuela Pagliano

Giovanni Baranello

Riccardo Masson

et al.

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Cited by 3 publications

(2 citation statements)

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“…Ecological information on motor development provided by parents is therefore of great value. The importance of the parent–therapist collaboration in rehabilitation has been stressed by Rosenberg et al and the diffusion of family‐centred models is well reported in the literature …”

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confidence: 95%

“…The importance of the parenttherapist collaboration in rehabilitation has been stressed by Rosenberg et al 14 and the diffusion of family-centred models is well reported in the literature. [15][16][17] Three scales are currently available to assess motor function in patients with RTT, but none were specifically designed for this neurological disorder. Despite strong psychometric properties, the Bayley Scales of Infant Development 18 and the Griffith Scales 19 provide general motor scales that would not easily capture the specific features of movement in RTT, and locomotion in particular.…”

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confidence: 99%

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Motor function in Rett syndrome: comparing clinical and parental assessments

Roidi

Isaias

Cozzi

et al. 2018

Develop Med Child Neuro

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Aim To describe a new clinical tool, the Rett Syndrome Motor Evaluation Scale (RESMES) and to assess (loco‐)motor function in people with Rett syndrome (RTT). Method Formal assessment provided by physicians was followed by parents’ direct observation at home using the RESMES. Sixty females (mean [SD] age 12y 5mo [8y 9mo], range 3–40y) with a clinical diagnosis and genetically determined RTT participated in the study. Spearman's/Pearson's coefficients assessed the correlation between the clinicians’ and caregivers’ evaluations, as well as the correlation of RESMES scores with other scales, namely the Pain Assessment in Advanced Dementia, the Rett Assessment Rating Scale, the Modified Ashworth Scale, and hand function (assessed with a scale of evaluation of purposeful hand function). Scores provided by parents and clinicians were tested statistically by Mann–Whitney U test. Results Approximately 88% of patients had moderate to severe RTT symptoms and, on average, moderate motor impairment based on the RESMES. RESMES total scores provided by clinicians and caregivers were highly correlated (r=0.91), as were the subscale scores. Postural transition was a critical area of the RESMES, where parents systematically provided lower scores than clinicians, indicating milder degrees of disability. Severity of scoliosis and mutation type emerged as significant predictors of motor function. Interpretation The RESMES characterized the (loco‐)motor impairments of the patients with RTT well. It also showed a close correlation between the evaluations of clinicians and caregivers, with the possible exception of postural transition tasks, which should be carefully addressed in a clinical setting. The type of mutation and presence of scoliosis should be evaluated, as they predicted the ability to walk. What this paper adds Caregivers at home can reliably assess motor function in Rett syndrome using the Rett Syndrome Motor Evaluation Scale (RESMES). RESMES scores provided by clinicians and parents were highly correlated. The severity of scoliosis and the genetic mutation predicted standing and walking abilities.

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confidence: 95%

mentioning

confidence: 99%

Motor function in Rett syndrome: comparing clinical and parental assessments

Roidi

Isaias

Cozzi

et al. 2018

Develop Med Child Neuro

View full text Add to dashboard Cite

show abstract

Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice

Amato,

Darling,

Stovickova

et al. 2024

European Journal of Paediatric Neurology

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Deep brain stimulation for childhood dystonia: current evidence and emerging practice

Elkaim

Vloo

Kalia

et al. 2018

Expert Review of Neurotherapeutics

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Dystonia, one of the most common childhood movement disorders, is often medically refractory and can lead to profound impacts on the child and their caretakers' quality of life. Limited efficacy of pharmacological treatments has fueled enthusiasm for innovative neurosurgical approaches, notably deep brain stimulation (DBS) as a treatment for refractory dystonia. Areas covered: DBS is increasingly applied to successfully treat childhood dystonia. While generally safe and effective, results vary widely depending on underlying dystonia etiology. The current work synthesizes and highlights advances in research pertaining to the use of DBS for childhood dystonia. The efficacy of DBS for children and youth with dystonia is discussed, with analysis divided among etiological subtypes. The role of DBS as a lifesaving treatment for status dystonicus is also reviewed. Expert commentary: When carefully selected, certain children and youth with dystonia experience significant symptomatic improvement after DBS. Beyond dystonic symptoms, DBS can improve quality of life and reduce caretaker burden.

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Outcome measures for children with movement disorders

Cited by 3 publications

References 33 publications

Motor function in Rett syndrome: comparing clinical and parental assessments

Motor function in Rett syndrome: comparing clinical and parental assessments

Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice

Deep brain stimulation for childhood dystonia: current evidence and emerging practice

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