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The 34th International Seating Symposium, 2018

Demonstrationat International Seating Symposium 2018The 34th International Seating Symposium, 2018

Dynamic Seating – Enhancing Participation Through Movement
Michelle L. Lange, OTR/L, ABDA, ATP/SMS
Jessica Presperin Pedersen, MBA, OTR/L ATP/SMS
3/6/18

Course Description:

This workshop will demonstrate how dynamic seating can absorb and diffuse the force of involuntary movement, reduce energy exertion, reduce wear on the wheelchair or components, as well as promote controlled movement, enhance function, lessen agitation, maximize sitting tolerance, diminish fatigue, or boost alertness. Products will be available for trial.

Learning Objectives:

The participant will be able to:

  1. describe three indications for why a dynamic seating system would be recommended
  2. discuss three options for providing dynamic movement at the hip or pelvis.
  3. discuss three options for providing dynamic movement at the head.

A Feasibility Trial of a Whole Body Dynamic Seating System for Preschool Children with Dystonia: aims, methods, and measures
Tim Adlam and Hortensia Gimeno

Introduction

There is very little evidence to support or oppose the use of dynamic seating for children with dystonic cerebral palsy and similar hyperkinetic movement disorders, yet its use is growing as seats are designed and brought to market1,2. We aim to conduct a feasibility trial to assess the preliminary efficacy of dynamic seating.

Background

Dystonia is a neurological syndrome characterised by involuntary, patterned, sustained, or repetitive muscle contractions of opposing muscles, resulting in abnormal twisting body movements and postures3,4 we categorized our patients into two different groups: (i; potentially disrupting all functional aspects of daily life5. Painful dystonic movements can be triggered by attempting to move, further limiting the child’s ability to participate. Distress and frustration can exacerbate the movements, resulting in a toxic feedback loop that is difficult to exit. Gimeno et al.6 ranked functional concerns identified by families and young people with dystonic movement disorders: 1st were pain affecting function, and access to assistive technology; which were highlighted as the highest priority concerns for more than half the group. In their systematic review of interventions for children with cerebral palsy, Novak et al.7 identified a lack of high-quality research in assistive technology to support activity and participation. The support of activity and participation is a high priority.

Purpose

The purpose of the present feasibility trial is to guide and inform the design of a full scale trial to assess acceptability and efficacy of whole-body dynamic seating on activity, participation, and quality of life in preschool children with dystonic cerebral palsy, using mixed qualitative and quantitative methods. We have designed a study using a single case experimental design (SCED) with five replications.

Participants

The children participating in the study will meet all of the following inclusion criteria: (i) diagnosis of dystonic cerebral palsy; (ii) 21.5cm < Popliteal Fossa to Posterior Sacrum < 35cm; (iii) Gross Motor Function Classification System (GMFCS) levels IV and V8; (iv) Manual Ability Classification System (MACS) levels IVV9,10; (v) difficulties reported with current seating.

The exclusion criteria are: (i) pure spasticity or mixed phenotype when spasticity is the dominant feature; (ii) neurodegenerative dystonia; (iii) scheduled for surgical treatments in the study period; (iv) scheduled to receive botulinum toxin injections during the study period; (v) epilepsy.

Dynamic Seating

The children will be assessed in two seats: their usual static or backrest-only dynamic seat; and a new whole body dynamic seat11 that accommodates asymmetric movement and substantial hip extension (>160° hip/trunk angle).

Study Design

The study is a SCED consisting of N-of-1 plus five replications. Each child will be assessed on multiple occasions during a baseline period of at least two weeks; during an intervention period of 8 weeks; and then post-intervention. The length of the baseline period will be randomised for each child. Using this design, comparison of treatment-as-usual (the child’s own seat) with the intervention (dynamic seating) is possible, with each child acting as their own control.

Measures And Assessments

Measurements will be taken for three purposes: 1) descriptive tools to describe phenotype, motor impairment and other inhibitors of functional ability; 2) assessment tools to be completed before, during and after the intervention period, including questionnaires and goal setting (these are secondary outcome measures); and 3) assessments completed before, during and after the intervention period, to establish changes in the impact on functioning of the dynamic seating.

Assessment at Intake

Participants will be characterised with a series of tools that will classify their ability to function in ICF domains5.

Functional Ability:

Manual Ability Classification System (MACS)9,10
Gross Motor Function Classification System (GMFCS)12
Communication Function Classification System (CFCS)13

Motor phenotype:

Burke Fahn Marsden Dystonia Rating Scale (BFM DRS)14
Hypertonia Assessment Tool (HAT)15 dystonia, rigidity
Measures during Baseline and Intervention Periods
Measures will be used to assess the functional impact of the dynamic seat.

Primary Measures

We have selected three co-primary measures: seating tolerance; goal attainment and task performance quality:

  1. The Canadian Occupational Performance Measure (COPM)16 will be used to assess the ability of the child to achieve a parent set goal in their usual seat and in the dynamic seat.
  2. The Performance Quality Rating Scale (PQRS)17 measures personally meaningful activities. It has been used inconsistently with different scoring systems, and there have been no formal publications on its psychometric properties. The purpose of this study was to test and compare the psychometric properties of two PQRS scoring systems in two populations. Methods: A secondary analysis of video recorded participant-selected activities from previous studies involving either adults living with stroke or children diagnosed with developmental coordination disorder (DCD) will be used to assess the ability of the child to carry out the goals set by the parent. Performance quality will be rated from video by blind independent raters.
  3. Seating tolerance will be measured objectively using simple sensors built into the seats that detect and log when the seat is occupied.
Secondary Measures

Based on previous work evaluating functional measures with preschool children with dystonia, we have selected secondary measures of the ability of children to function in physical and social domains. These measures are:

  1. The Responsive Augmentative and Alternative Communication Style Scale (RAACS)18 will be used to measure parent/child interactions.
  2. Quality of Life will be measured with the Paediatric Quality of Life Inventory (PedsQL)19. The measure includes functional daily activities.
  3. Measurement of the child’s performance of a reaching task will be attempted during baseline and intervention periods. Video and sensors will be used to measure time and distance of closest approach to the target. Task performance will be measured using the PQRS assessed from video by blind raters.
  4. Sleep quality assessment is based on the premise that dystonia is abolished by sleep. Discreet wireless sensors will be used to measure the child’s movements at night. Periods of dystonic movement indicate wakefulness.
  5. Parents will be interviewed and provided with tablet computers to gather anecdotal evidence.
Conclusions

Our work suggests that measuring functional outcomes in young children with dystonia, even though challenging, is possible, and necessary if we are to evaluate the effectiveness of technology designed for them. We believe that the study design we are proposing will provide an efficient and feasible method of running such studies, and are carrying out our feasibility study to inform future research design in this field. This protocol will be described in greater detail in a forthcoming paper.


Acknowledgements

We are grateful to Sparks Children’s Medical Research Charity for funding this work.

References

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    Assist. Technol. 4 (2009) 422–428.
  2. M. Hahn, S. Simkins, J. Gardner, G. Kaushik, A Dynamic Seating System for Children with Cerebral Palsy, J. Musculoskelet. Res. 12 (2009) 21–30.
  3. A. Schmidt, H.C. Jabusch, E. Altenmüller, L. Enders, R. Saunders-Pullman, S.B. Bressman, A. Münchau, C. Klein, J. Hagenah. Phenotypic spectrum of musician’s dystonia: A task-specific disorder?, Mov. Disord. (2011).
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  5. WHO, Towards a Common Language for Functioning, Disability and Health: ICF, World Health Organization, Geneva, 2002.
  6. H. Gimeno, A. Gordon, K. Tustin, J.-P. Lin, Functional priorities in daily life for children and young people with dystonic movement disorders and their families., Eur. J. Paediatr. Neurol. 17 (2013) 161–168.
  7. I. Novak, S. Mcintyre, C. Morgan, L. Campbell, L. Dark, N. Morton, E. Stumbles, S.-A. Wilson, S. Goldsmith, A systematic review of interventions for children with cerebral palsy: State of the evidence, Dev. Med. Child Neurol. 55 (2013) 885–910.
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  10. A.C. Eliasson, A. Ullenhag, U. Wahlström, L. Krumlinde-Sundholm, Mini-MACS: development of the Manual Ability Classification System for children younger than 4 years of age with signs of cerebral palsy, Dev. Med. Child Neurol. 59 (2017). doi:10.1111/dmcn.13162.
  11. T. Adlam, R. Orpwood, E. Johnson, A. Wisbeach, Whole Body Dynamic Seating for Children with Extensor Spasms, in: Cooper, M. Story (Eds.), 30th Int. Seat. Symp., Interprofessional Continuing Education, University of British Columbia, Vancouver, 2014: pp. 182–185. http://www.interprofessional.ubc.ca/ISS2014/ISS2014Syllabus.pdf.
  12. R. Palisano, P. Rosenbaum, S. Walter, D. Russell, E. Wood, B. Galuppi, Gross Motor Function Classification System for Cerebral Palsy (GMFCS ), CanChild Centre for Childhood Disability Research, 1997.
  13. M.J.C. Hidecker, N. Paneth, P.L. Rosenbaum, R.D. Kent, J. Lillie, J.B. Eulenberg, K. Chester, B. Johnson, L. Michalsen, M. Evatt, K. Taylor, Developing and validating the Communication Function Classification System for individuals with cerebral palsy., Dev. Med. Child Neurol. 53 (2011) 704–10.
  14. R.E. Burke, S. Fahn, C.D. Marsden, S.B. Bressman, C. Moskowitz, J. Friedman, Validity and reliability of a rating scale for the
    primary torsion dystonias., Neurology. 35 (1985) 73–7.
  15. A. Jethwa, J. Mink, C. Macarthur, S. Knights, T. Fehlings, D. Fehlings, Development of the Hypertonia Assessment Tool (HAT): A discriminative tool for hypertonia in children, Dev. Med. Child Neurol. 52 (2010) e83–e87.
  16. M.C. Law, S. Baptiste, A. Carswell, M.A. McColl, H.J. Polatajko, N. Pollock, Canadian Association of Occupational Therapists., Canadian occupational performance measure, 5th ed., Ottawa, 2014.
  17. R. Martini, J. Rios, H. Polatajko, T. Wolf, S. McEwen, The performance quality rating scale (PQRS): reliability, convergent validity, and internal responsiveness for two scoring systems., Disabil. Rehabil. (2014).
  18. M. Broberg, U. Ferm, G. Thunberg, Measuring Responsive Style in Parents who use AAC with their Children: Development and Evaluation of a new Instrument, http://dx.doi.org/10.3109/07434618.2012.740686. (2012).
  19. J.J.W. Varni, T.M.T. Burwinkle, S. a Sherman, K. Hanna, S.J. Berrin, V.L. Malcarne, H.G. Chambers, Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children, Dev. Med. Child Neurol. (2005). doi:10.1017/S0012162205001179.

(or, “To view this paper in the Syllabus, follow this link: http://seatingsymposium.com/images/pdf/ISS2018_Syllabus_eVersion.pdf)

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