LEARN 2 MOVE 2-3
Lessons learned
Marjolijn Ketelaar
Anne Kruijsen-Terpstra
Olaf Verschuren
Johannes Verheijden Marian Jongmans
Jan Willem Gorter Anne Visser-Meily
LEARN 2 MOVE (L2M)
Dutch, national research program
evaluating effects of age-specific interventions to optimize
performance of mobility-related activities of children and
adolescents (age 0-24 years) with cerebral palsy (CP)
Four age groups
• Infancy 0-2 years Groningen
• Preschool age 2-3 years Utrecht
• School age 7-12 years Amsterdam
• Adolescence 16-24 years Rotterdam
Interventions - pathways
Child-focused
Context-focused
Child-focused Context-focused Regular care
Training Goal setting procedures, step-by-step session documentation forms and principles of the child-focused approach.
Goal setting procedures, step-by-step session documentation forms and principles of the context-focused approach.
No training
No instructions on documentation regarding problem definition, priorities, goals, analysis, sub-goals, intervention and evaluation; therapists document the way they are used to. Session documentation collected at the end of the study.
Problem definition COPM COPM
Priorities COPM COPM
Goals - Goal identification according to the COPM.
- Goals formulated in SMART format. - Goal identification according to the COPM, in consultation with parents.
- Goals formulated in SMART format.
Analysis Arrange constraints and enablers in ICF-CY:
focus on constraints and facilitators for the child.
Arrange constraints and enablers in ICF-CY: focus on constraints and facilitators in the child’s environment and the task.
Sub-goals Sub-goals formulated in SMART format. Sub-goals formulated in SMART format, together with parents.
Intervention Focus on remediation of the child’s abilities by changing the components of body function and structure.
Focus on functional performance by changing constraints regarding the task and/or the environment.
Evaluation Therapist evaluates goal. When a goal is
attained, a new goal is defined. Therapist evaluates goal in consultation with parents. When a goal is attained, a new goal is defined, in consultation with the parents.
• Black box ( Cieza, et al., 2014 )
Regular
Aims LEARN 2 MOVE 2-3
• To compare effects child-focused,
context-focused and regular intervention
• To describe what happens in interventions
• Experiences of parents
• N=68 children with CP
• 2-3 yrs old
• GMFCS I-IV
De Hoogstraat Revalidatie
RC Rijndam
RC Tolbrug
RC Beatrixoord
RC Vogellanden Revalidatie Friesland
Sint Maartenskliniek Reade
Adelante Zorggroep RC Roessingh
Revant RC Breda
RC Leijpark
RC De Trappenberg
Design
Child-focused Context-focused
Regular care
T0 6 months T1 Training therapists
R a n d o m
i s a t i o n
Primary outcome:
PEDI – FSS -self-care -mobility
Process and intervention documentation
Outcome measures
• Primary outcome
– Pediatric Evaluation of Disability Inventory (PEDI)
• Functional skills
Self-care Mobility
Secondary outcomes
Various Child variables - PEDI CAS
- Participation - Preschool CAPE - Individual goals
- ...
Various parent variables - Stress
- Empowerment
- Family participation
- …
Participants
Intervention approach Child-
focused (n=21)
Context- focused (n=20)
Regular care (n=27)
Total group (n=68) Age (years), mean (SD) 2.9 (0.5) 3.1 (0.4) 2.9 (0.5) 3.0 (0.5)
Sex Male 13 7 18 38
Female 8 13 9 30
GMFCS I 11 10 13 34
II 3 3 7 13
III 3 5 2 10
IV 4 2 5 11
MACS I 7 6 3 16
II 10 8 14 32
III 2 5 9 16
IV 2 1 1 4
BSID-II-NL cognitive scale, mean (SD)
78.9 (25.7) 77.8 (20.5) 76.3 (19.7) 77.5
(21.5)
Results PEDI-Functional Skills
40 45 50 55 60 65
T0 T1
Child Context Regular 40
45 50 55 60 65
T0 T1
Child Context Regular
Self-care
Mobility
No significant differences between interventions
Kruijsen et al, Dev Med Child Neurol, in press
Conclusions
Primary and secondary outcomes:
• Children develop over time
• No sign differences between interventions
Individual goals….
Aims LEARN 2 MOVE 2-3
• To compare effects child-focused, context-focused and regular care
• To describe what happens in interventions
• Experiences of parents
What happened in interventions?
•Pediatric Rehabilitation Observational
measure of Fidelity (PROF; Di Rezze 2013)
Video analysis
• 49 video’s of individual intervention sessions
• Pediatric Rehabilitation Observational measure of Fidelity (PROF; Di Rezze 2013 )
– Child-focused domain
– Context-focused domain
Items PROF
(child-focused and context-focused domain)
Items child-focused domain
1. The therapist focus on remediating the child’s movement or skills 2. The therapist focus on if the child completes activities in a specific way 3. The therapist focus on the quality of the child’s movement and/or skills
4. The therapist facilitate repetition in the practice of movements or motor skills addressed in the intervention session
Items context-focused domain
5. The therapist focus on changing the environmental constraints that influence the child’s activity performance
6. The therapist focus on adapting an activity to enable the child to complete the activity 7. The therapist provide opportunities for the child to practice activities for the purpose of
completion
8. The therapist focus on the most efficient way that best suits the child to perform the activity
Child-focused elements Context-focused elements
p<.000 p<.000
What happened in interventions?
Kruijsen et al – Phyc Occ Ther in Practice, pending minor revision
Conclusions
• There were differences between interventions in the direction aimed for
• Not as black and white as aimed for
• Large variation
• Regular therapy is a mix of child-focused and
(less) context-focused elements
Aims LEARN 2 MOVE 2-3
• To compare effects child-focused, context-focused and regular care
• To describe what happens in interventions
• Experiences of parents
Conclusions interviews experiences and needs
• In general parents hardly were aware of what happened in therapy
• Themes:
– Information
– Communication – Partnership
Process of empowerment
• Large differences between parents
• Changes over time
Aims LEARN 2 MOVE 2-3
• To compare effects child-focused, context-focused and regular care
• To describe what happens in interventions
• Experiences of parents
To conclude
• No differences in effects of interventions
• Differences in interventions delivered therapist-child
• Large differences between parents – experiences, needs
• Parents hardly were aware of what happened
in therapy
Child-focused Context-focused Regular care
Problem definition COPM COPM No instructions on
documentation, therapists will document the way they are used to do. Documentation will be collected after the end of the study.
Priorities COPM COPM
Goals - Goal identification according to the COPM
- Goals formulated SMART1
- Goal identification according to the COPM, with parents - Goals formulated SMART1
Analysis Arrange constraints and enablers in ICF-CY - focus on constraints and facilitators in the child
Arrange constraints and enablers in ICF-CY – focus on constraints and facilitators in the environment and the task
Sub-goals Sub-goals formulated SMART Sub-goals formulated SMART, with parents
Intervention Focus on remediation of the child’s abilities through changing the components of body function and structure
Focus on functional
performance trough changing constraints in the task and/or the environment
Evaluation Therapist evaluate goal, when attained a new goal will be defined
Therapist evaluate with parents goal, when attained a new goal will be defined with parents
Lessons learned
• Major challenges:
– Problem analysis – Process aspects
– Parent engagement
• Implementation…
– Therapists
– Organisation / process aspects
– Parents
This study is part of the Dutch national LEARN 2 MOVE research program and is supported financially by ZonMw, Johanna Kinderfonds, Stichting Rotterdams Kinderrevalidatie Fonds Adriaanstichting, Revalidatiefonds, Phelps Stichting, Revalidatie Nederland, and the Nederlandse Vereniging van Revalidatieartsen.
• Children and parents
• Rehabilitation centers and Therapists
• Prof. Eline Lindeman
• Eric Huyzer
• Astrid Onderwater
• Hennie Boeije
• Larisa Riedijk
• Astrid Onderwater
• Research assistants
• Students
www.cp-research.nl/LEARN2MOVE
Results
Intervention
Regular therapy Child-focused Context-focused
Median Range (min-max)
Interquartile (25-75%)
Median Range (min-max)
Interquartile (25-75%)
Median Range (min-max)
Interquartile (25-75%)
Child-focused domain
1. Remediation 3 1-5 2-4 4 2-5 3-4 2 1-3 1-2
2. Specific way in completion 3 1-5 2-3.3 3 2-5 3-4 2 1-3 1.3-2
3. Quality of movements 2 2-3 2-3 3 2-4 2-3 2 1-3 2-2.8
4. Repetition in practice 3 1-3 2.8-3 4 1-5 2-4 1 1-3 1-2
Mean items 1-4 2.8 1.8-4.5 2.3-3.2 3.5 2-4.5 2.3-3.5 1.6 1-2.8 1.5-2.5
Context-focused domain
5.Changing the environment 1 1-1 1-1 1 1-2 1-1 1 1-5 1-2
6.Adapting activity 1 1-2 1-1 1 1-2 1-1 1 1-3 1-1
7.Purpose of completion 3 1-4 2-3.3 2 1-4 2-4 4 2-5 4-5
8.Most efficient way 3 1-5 2.8-4 2 1-4 2-4 4 1-5 4-5
Mean items 5-8 2.1 1-2.5 1.7-2.5 1.8 1-2.8 1.3-2.5 2.9 1.8-4 2-3
Results
Intervention
Regular therapy Child-focused Context-focused
Median Range (min-max)
Interquartile (25-75%)
Median Range (min-max)
Interquartile (25-75%)
Median Range (min-max)
Interquartile (25-75%)
Child-focused domain
1. Remediation 3 1-5 2-4 4 2-5 3-4 2 1-3 1-2
2. Specific way in completion 3 1-5 2-3.3 3 2-5 3-4 2 1-3 1.3-2
3. Quality of movements 2 2-3 2-3 3 2-4 2-3 2 1-3 2-2.8
4. Repetition in practice 3 1-3 2.8-3 4 1-5 2-4 1 1-3 1-2
Mean items 1-4 2.8 1.8-4.5 2.3-3.2 3.5 2-4.5 2.3-3.5 1.6 1-2.8 1.5-2.5
Context-focused domain
5.Changing the environment 1 1-1 1-1 1 1-2 1-1 1 1-5 1-2
6.Adapting activity 1 1-2 1-1 1 1-2 1-1 1 1-3 1-1
7.Purpose of completion 3 1-4 2-3.3 2 1-4 2-4 4 2-5 4-5
8.Most efficient way 3 1-5 2.8-4 2 1-4 2-4 4 1-5 4-5
Mean items 5-8 2.1 1-2.5 1.7-2.5 1.8 1-2.8 1.3-2.5 2.9 1.8-4 2-3