Content. Aim of Dutch Consensus meetings. Reason to start Dutch DCD consensus meetings? Consensus development around DCD in the Netherlands

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1 Consensus development around in the Netherlands Marina Schoemaker Centre for Human Movement Sciences, University Medical Centre Groningen, The Netherlands Content Review 7 Dutch Concensus meetings Aim of each meeting Outcome Conclusions European Guideline for 2 Meeting Meeting Meeting Meeting Meeting Meeting Meeting Meeting Leeds consensus Meetings 2006 European Guideline for 2010 Aim of Dutch Consensus meetings To reach nationwide consensus in Child Rehabilitation about: Terminology Diagnosis (assessments/tests) Criteria for diagnosis (cut-off points) Intervention 4 Motor Remedial Teaching The Netherlands: Referral of Children with Private Physical or Occupational Therapy Practice Out-patient treatment in Rehabilitation Centre Reason to start Dutch consensus meetings? 1997: Contact between Human Movement Sciences Groningen and Rehabilitation Clinic Beatrixoord in Haren: Is it possible to evaluate the effectiveness of the multi-disciplinary treatment of children with in Dutch rehabilitation centers? 6 1

2 Problems: Use of different terms for children with coordination problems Use of different protocols to diagnose these children. Use of different treatment programs (between disciplines as well as within disciplines). 1. Terminology Dyspraxia Children with MND (minor neurological dysfunction) Children with sensory integration problems Children with Developmental Coordination Disorder 7 8 Conference Under which umbrella? Participants of the first Dutch Consensus meetings terminology assessment intervention Researchers Representatives of 19 rehabilitation centers: physician psychologist Scientific data / knowledge Clinical experience Under which umbrella? st meeting (December 1998) Aim: To reach consensus about the term to be used to name the children under consideration Meeting: Invited speakers provide information about importance of the use of a uniform term. Group discussion 2nd meeting (June 1998) Reason to organise 2nd meeting: Diagnostic criteria for are rather vague. Multiple interpretations of the criteria are possible Conclusion: Unanimous choice to use the term in the future and related terms from the DSM-IV for co-morbid problems

3 2nd Dutch consensus meeting Aim: To reach consensus about preliminary diagnostic criteria for children with Meeting: Presentation of data of large literature search how DSM-IV criteria are operationalised in literature (176 studies screened, 64 studies included). Proposal for Preliminary diagnostic criteria RH Geuze, MJ Jongmans, MM Schoemaker, BCM Smits- Engelsman. (2001). Clinical and research diagnostic criteria for developmental coordination disorder: a review and discussion. Human Movement Science, 20: DSM Criterion A Performance in daily activities that require motor coordination is substantially below that expected given the person s chronological age and measured intelligence. This may be manifested by marked delays in achieving motor milestones (e.g., walking, crawling, sitting), dropping things, clumsiness, poor performance in sports, or poor handwriting. (DSM-IV-TR, 2000 p. 58). Operational definition of Criterion A: The total score on the Movement-ABC is below the 15th percentile. 14 DSM Criterion B Criterion B. The disturbance in criterion A significantly interferes with academic achievement or activities of daily living. DSM Criterion C The disturbance is not due to a general medical condition (e.g., cerebral palsy, hemiplegia or muscular dystrophy) and does not meet criteria for a Pervasive Developmental Disorder. Operational definition of Criterion B: The reason to refer children to a rehabilitation centre should reflect that the disorder interferes with academic achievement and activities of dialy living. The disturbance is not due to a general medical condition according to the results of a physicalneurological examination DSM Criterion D If mental retardation is present, the motor difficulties are in excess of those usually associated with it. A diagnosis cannot be made if the score on a standardised test for intelligence is below 70. Outcome of 2nd Dutch Consensus meeting 1. Proposal of preliminary diagnostic criteria 2. Decision to carry out a retrospective study to investigate the usefulness of the proposed criteria

4 3rd meeting (March 2000) Aim: To determine whether the proposed diagnostic criteria select the right group of children. Meeting: Presentation of data of a retrospective study Data from 185 children already enrolled in rehabilitation programmes were gathered to investigate how many children met de proposed criteria (i.e. criteria A and D) 19 Results of retrospective study Criterion A Criterion D 75% of the referred children met criterion A N=137 95% of the referred children met criterion D 25% of referred children did not meet criterion A N= 48 5% of the referred children did not meet criterion D 20 Conclusion of 3rd consensus meeting 25% of children referred for coordination problems are missed when using the proposed diagnostic criteria (i.e. children with handwriting / visual-motor problems) Proposal: adaptation of proposed criteria? 4th Dutch Consensus meeting (September 2000) Problem: implementation of decisions of consensus meetings became difficult, because therapists felt they were left out of the decision making process. Decision to organise 4th consensus meeting including also representatives of paramedical professions in order to create more willingness to implement the decisions made during the consensus meetings 21 Aim 4th meeting: to invite representatives of the therapists to the consensus meeting. To give an update of the decisions made so far. To provide opportunity to discuss the decisions made 22 Participants of the 4th and following Dutch Consensus meetings Researchers Representatives of 19 rehabilitation centers: physician psychologist occupational therapist physical therapist (speech therapist) Outcome of 4th Dutch consensus meeting: Decision: prospective study to investigate whether the proposed criteria are useful for identifying children with in child rehabilitation. To add the VMI and BHK (handwriting assessment scale) to investigate fine motor problems in the referred group. To add the CBCL and TRF to the diagnostic protocol to investigate the presence of comorbidity

5 5th meeting (January 2003) Presentation of results of prospective study Conclusion of prospective study: When only the M-ABC is used for criterion A, children with fine motor disorders may be missed. 25 Conclusion of 5th meeting: Proposed Dutch Criteria Criterion A. Movement ABC: Total score <= P15 and/ or subtests <= P5 Dysgraphia (BHK):quality >= 21 and / or speed <= 1 decile VMI (Beery): standardscore <= 85 Criterion B: The reason to refer children to a rehabilitation centre should reflect that the disorder interferes with academic achievement and activities of daily living. Criterion C: The disturbance is not due to a general medical condition according to the results of a physical-neurological examination. Criterion D: A diagnosis cannot be made if the score on a standardised test for intelligence is below 70. Assessment with an IQ test is only required in case of doubts about level of IQ. REHABILITATION DOCTORS PSYCHOLOGISTS Steering committee Researchers Representatives of different working groups THERAPISTS Occupational therapists Physical therapists Speech therapists 6th meeting (February 2006) Aim: 1. Is it possible to use questionnaires to define criterion B more objectively? 2. To present an overview of the state of the art regarding treatment of children with in child rehabilitation. 3. To reach consensus about the proposed criteria Questionnaires Sensitivity Specificity Sensitivity and Specificity of: Checklist of the M-ABC Developmental Coordination Disorder- Questionaire (-Q) Motor Observation Questionnaire (MOQ-T) Checklist M- ABC -Q 79% 82% 65% 89% Sample: About 180 children, 90 referred to child rehabilitation and 90 children from mainstream schools 29 MOQ-T 81 % 62% 5

6 Conclusion A decision was made to add the MOQ-T and -Q to the treatment protocol and to investigate their usefullnes in clinical practice. 2. Treatment of children with in Dutch rehabilitation centres Study regarding the nature of treatment of children with by physical and occupational therapists Inventory of treatment goals and intervention method to reach a particular treatment goal. 7 Rehabilitation Clinics participated 50 children with (4-12 years of age) 226 treatment goals were formulated ICF classification Health Condition Body functions Activities Participation Personal factors External factors Outcome 6th Consensus meeting 1. Voted for nation wide use of new set of diagnostic criteria in all rehabilitation centers. 2. All rehabilitation centers accepted the protocol 3. Unanimous decision to develop guidelines for treatment of yes B reason referral parent,school C neuro-motor investigation exclusion neuromotor condition? Movement ABC A M-ABC 15% or 1 cluster 5%? yes D IQ score IQ > 70? no no no yes no no referral/ therapy other diagnoses/ referral fine motor problem VMI or BHK VMI 85 or BHK 21 or speed 10%? Dutch diagnostic criteria for no No match criterion A 35 no match criteria 6

7 2006: Leeds consensus statement 5 meetings to provide a more detailed picture of than was provided by the DSM Diagnosis Intervention Leeds Consensus Criterion A Individually administered and culturally appropriate, norm-referenced test of general motor competence. The cut off point at or below the 5th percentile. Checklists may be used as an initial screening tool. Children that score below the 15 th should be monitored Criterion B Assessment should reflect culturally relevant developmental norms relating to activities of daily living tasks and should include consideration of self-care, play, leisure and schoolwork (including handwriting, PE and tool use). Criterion C A conventional neurological examination should be conducted to rule out major neurological conditions (e.g. definite disorders and syndromes, red flags) Dutch Consensus Identical, with the exception that the cut off point is at or below the 15th percentile Identical Identical 37 Criterion D Children with a measured, or presumed, IQ below 70 should not be given a diagnosis of, as these children are known to have a higher risk of motor difficulties. Identical Intervention (according to LCS) Approaches should Contain activities that are functional and are based on those that are relevant to daily living and meaningful to the child, parents, teachers and others. These should be based on accurate assessment and aim to improve the child s motor functions plus other attributes such as self esteem and confidence. Involve the child s wishes as key parts of the intervention process. This will usually include identifying functional tasks, choosing priorities, establishing targets for success and engaging in monitoring their own progress. 7 th Consensus Meeting (March 2008) Aim: To provide an update of the plans to develop intervention guidelines Do we consent with the or Leeds Consensus Statement? There are no miracle cures! There is converging evidence for efficacy of taskoriented approaches Leeds Consensus Statement (LCS) Why reluctance to accept 5th % as cut-off criterion? Before the 7th meeting the Leeds Consensus Statement was translated in Dutch, and all participants did receive a translation before the conference During the conference the differences between the Dutch and Leeds consensus statement were highlighted and discussed 41 Doubt about differences between groups of children scoring below the 5th or scoring between the 5th and 15th percentile? Is there a difference in neurological make-up? Do they also differ on other motor tests or comorbidity? Practical consequences: parents of children without a diagnosis may not get money to pay for special needs. 42 7

8 7 th Consensus Meeting (March 2008) Outcome of 7th Consensus meeting regarding Leeds consensus statement: Regarding the development of intervention guidelines: No money is available to develop intervention guidelines Too little scientific evidence to develop guidelines for intervention. Decision to accept Leeds Consensus Statement, with the exception of Criterion A (for the time being). To start a study regarding the differences between children performing below the 5th and children performing between the 5th and 15th centile on the MABC Dutch Diagnostic Criteria for Developmental Coordination Disorder (DSM-IV) Criterion A. Performance in daily activities that require motor coordination is substantially below that expected given the person s DSM-IV chronological age and measured intelligence. The total score on the Movement-ABC is below the 15th percentile. Criterion B. The disturbance in criterion A significantly interferes with academic achievement or activities of daily living. The reason to refer children to a rehabilitation centre should reflect that the disorder interferes with academic achievement and activities of dialy living. Criterion C. The disturbance is not due to a general medical condition (e.g., cerebral palsy, hemiplegia or muscular dystrophy) and does not meet criteria for a Pervasive Developmental Disorder. The disturbance is not due to a general medical condition according to the results of a physical-neurological examination. Criterion D. If mental retardation is present, the motor difficulties are in excess of those usually associated with it. A diagnosis cannot be made if the score on a standardised test for intelligence is below 70. Conclusion Nationwide consensus has been reached about terminology and diagnostic criteria for. 46 Study: Participants: N=120 2 groups Children with scores on M-ABC at or below the 15th % (Criterion A) Children referred to rehabilitation clinics for outpatient treatment of motor coordination problems (Criterion B) No medical condition according to a medical examination by a rehabilitation physician (Criterion C). VIQ > 70 (Criterion D) (MABC score < 5th %) N=84 (70%) 6 girls, 78 boys (1:13) Mean age 8.4 (SD 1.8) At risk for (M- ABC score between 5th and 15th %) N=36 (30%) 7 girls, 29 boys (1:4) Mean age 8.2 (SD 1.4)

9 Measuring instruments Motor assessment VMI -Q Cognitive assessment WISC-R/WIPSSI Behavioral assessment Child Behavior Checklist (CBCL) Teacher Report Form (TRF) VMI -Q < 5th % 87,4 (14,9) N=68 41,4 (10,1) N=53 At risk > 5th and < 15th% 90,7 (13,8) N=31 42,9 (9,3) N=23 P-value P=.31 P= TIQ VIQ PIQ < 5th % ,5 88,8 At risk > 5th and < 15th% 98,6 100,7 96,9 P-value at risk MABC: 5th -15th % deviant scores T > 63 TRF 22,6% * internalising TRF 16,1% externalising CBCL 37,1% internalising CBCL 28,6 % * externalising * p=.06 MABC < 5th % deviant scores T > 63 8,8% 11,8% 33,3% 14,3% Conclusions No differences between children at risk for and children with regarding measures of motor behavior Children with have significantly lower performal IQ scores than children at risk for Children at risk for have more often internalising problems according to teachers and more often externalising problems according to parents than children with 2010 New development: European Guideline Aim: to reach international consensus about: Terminology Diagnostic criteria Assessment Intervention To develop a guideline for assessment and intervention

10 Description and underlying mechansims Wilson, P. Blank, R. Ruddock, S. Coordinator Maulbronn (Blank) Steering group National/German speaking countries: Becker, Blank (GNP, coordination), International: Polatajko, Smits-Engelsman, Wilson Geuze, R. Writing groups critical appraisal of literature Diagnosis/ Assessment Blank, R. Smits-Engelsman, B. Linder-Lucht, M. Steiner, F. Treatment/ Management Smits-Engelsman, B. Schoemaker, M. Becker, H. Polatajko, H. Blank, R. consensus-panel / conference European panel (invited): Smits-Engelsman, Geuze, Hadders-Algra, Eliasson, Forssberg, Kraus, Sugden, Van Waelwelde, Schoemaker, Green, Lingam, Henderson, Barnett, Albaret, Hadders-Algra, Kadesjö, Kaiser, Kirby, Sangster Literature Search: < 5 years of age The onset of (SDDMF) is usually apparent in the early years but would not typically be diagnosed before 5 years of age. If a child between 3 and 5 years of age shows a marked motor impairment, even though there has been adequate opportunity for learning and other causes of motor delay have been excluded (e. g. child abuse, genetic syndromes, neurodegenerative diseases), a diagnosis of (SDDMF) may be made based on findings from at least two assessments, carried out at a sufficiently long intervals (at least 3 months). 56 Criterion A Criterion A (continued) Concerning Criterion A: An appropriate, valid, reliable and standardized motor test (appropriately norm-referenced) should be used. In the absence of a gold standard test for establishing Criterion A, the literature supports the recommendation of the Movement Assessment Battery for Children (MABC2). Where available the Bruinincks-Test, 2nd version (BOTMP2) is also recommended. In the absence of generally accepted cut-offs for identifying (SDDMF), it is recommended that when using the MABC, or other equivalent objective measures, the 15th percentile for the total score be used as a cut-off. If a child shows particular difficulties, i.e., performs below the 5th percentile on one domain but performs above the 15th percentile on other domains, the child should be considered to have a domain specific (SDDMF) (e.g., fine motor, gross motor). In case of doubt, repeated testing or an additional motor test may be used to support the diagnosis Criterion B Concerning Criterion B : The assessment should include consideration of activities of daily living (e.g. self-care and self-maintenance; academic/school productivity, pre-vocational and vocational activities, and leisure and play) and the views of the child, parents, teachers and relevant others Observational checklists and standardized parent and teacher questionnaires should be used to support and operationalize Criterion B The parent-report questionnaire Q-R may be recommended for use in those countries where it is culturaly relevant Screening The use of questionnaires (e. g. Q, MABC-Checklist) is not recommended for population-based screening for. We do not recommend population-based screening for

11 Criterion C A dual diagnosis of (SDDMF) and other developmental or behavioural disorders (e.g. autism spectrum disorders, learning disorders, ADHD) should be given if appropriate and priorities for intervention should be determined in keeping with the dysfunctions present. Criterion D D. If mental retardation is present the motor difficulties are in excess of those usually associated with it (acc. to DSM IV). (DSM-V: only criteria A, B, and C! should not be diagnosed if a motor test cannot be administered and if after a comprehensive assessment (including a clinical history, examination, and consideration of teacher and parent report) the motor dysfunction can be explained by another medical condition, psychosocial disorder or severe mental retardation Treatment We recommend using task-oriented interventions to improve motor tasks or to improve selected activities based on goal setting. We suggest Cognitive Orientation of Occupational Performance Training (CO-OP) and Neuromotor Task Training (NTT) as interventions in children with. Interventions that aim at improving body functions and structures may be effective but it seems that they are less effective in improving activities in children with than task-oriented approaches. Statement for body function oriented approaches: We do not know whether Sensory Integration Therapy (SIT) is effective. Comment: The evidence is inconclusive for the effectiveness of Sensory Integration Therapy (SIT) as an intervention for children with. 63 Current developments March 2011: 8th meeting informing representatives of child rehabilitation centres about European guideline. International guideline will be translated and adapted for use in clinical practice in the Netherlands. 64 Thank You! 65 11