Remi-Pro a standardized method to document the course of remission in children and adolescents after severe acquired brain-lesions

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Remi-Pro a standardized method to document the
course of remission in children and adolescents
after severe acquired brain-lesions

• Autors
• Ellen Romein MSc.OT
• Melanie Hessenauer, OT
• Clinic for Neuropediatrics and Neuro-Rehabilitatio
  n, Epilepsy Center for Children and Adolescents,
  Schön Klinik Vogtareuth

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First part why-what-howfor whom
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What are we talking about wakefulness,
awareness and responsiveness
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Coma no wakefulness, no awareness, no
responsiveness

• No eye-opening
• Unable to follow instructions
• No speech or other forms of communication
• No purposeful movement

5
Vegetative state or unresponsive wakefulness
wakefull, awareness?, no responsiveness

• Return of a sleep-wake cycle with periods of eye
  opening and eye closing
• May moan or make other sounds especially when
  tight muscles are stretched
• May cry or smile or make other facial expressions
  without apparent cause
• May briefly move eyes toward persons or objects
• May react to a loud sound with a startle
• Unable to follow instructions
• No speech or other forms of communication
• No purposeful movement

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Minimally conscious state wakefull, aware,
responses

• Gives yes or no responses verbally or with
  gestures
• Verbalizes intelligibly
• Demonstrates other purposefull behavior,
  including nonreflexive movements or affective
  gestures that occur in direct relationshop to
  relevant environmental stimuli

How do we measure
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Glasgow Coma Scale
3 8 points means coma
Teasdale and Jennet, 1974
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pediatric Coma Scale
response
Eye opening sponaneous 4
To speech 3
To pain 2
none 1
Best verbal response oriented 5
words 4
Vocal sounds 3
cries 2
none 1
Best motor response Obeys commands 5
Localizes pain 4
Flexion to pain 3
Extension to pain 2
None 1
Normal Aggregate Score Normal Aggregate Score
Birth to 6 months 9
Less than 612 months 11
Less than 12 years 12
Less than 25 years 13
More than 5 years 14
Reilly et al., 1988 Simpson et al., 1991
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Measurements of reactions to stimuli
Sensory Modality Assessment and Rehabilitation
Technique (SMART) 1 no response to any
stimulus 2 reflex response 3 withdrawal
response 4 localizing response 5
differentiating response
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Why waS Remi-Pro DEVELOPED

• No instrument was found that measures activities
  or participation for this group
• Questions
• what is participation for children in vegetative
  state and minimal conscious state?
• How can we observe participation in this groups
• How to develop participation-goals for this group
• How to unite all observations of the team, the
  parents, and relatives

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What is Remi-Pro

• It describes and measures abilities concerning
  activities and participation during the course of
  remission
• Individual abilities are monitored and
  categorized in six levels
• It can be regularly applied for clinical use
• Each level comprises 20-25 possible activities
• The child is compared with itself
• The results help to find occupational and
  participation goals
• It measures very small changes, especially in the
  early phases

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How was remi-Pro developed

• By observations, photos, videos of more than 500
  children from 1994-2014
• Abilities were grouped and named
• Six different remission levels could be
  distinguished
• For each level 20-30 observable activities were
  described
• Validation and adaptation through feedback of the
  team and in the master-thesis of Ellen Romein
  (2003)
• Regular improvement of the itemdescription in
  cooperation with the team

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For whom is remi-pro developed

• For children and adolescents who are admitted in
  a clinic with the diagnosis vegetative state
  and minimally conscious state
• Age 3 years 18 years
• Diagnoses TBI, hypoxic BI, other acquired brain
  injuries

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Second part unterstanding the levels 1-4
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What are we looking for

• How does the child react on described activities
  or participation-situations?
• How does the child participate?
• What does the child do?
• Was this a single observation by one person
• Did one person observe this more than once
• Did several persons make the same observation
• Are there any differences between the
  observations, what differences, when, where,

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Description of the six levels

• In every level we look at three participation
  areas
• A. Free play, leisure, well-being
• B. Locomotion, communication, ADL
• C. School, therapy, chores

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Description of the six levels

• In every level we look at three
  participation-areas
• A. Free play, leisure, well-being
• B. Locomotion, communication, ADL
• C. School, therapy, chores

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Description of the six levels

• In every level we look at three
  participation-areas
• A. Free play, leisure, well-being
• B. Locomotion, communication, ADL
• C. School, therapy, chores

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Documentation sheet 1 sleep-wake level

• - Regular phases of sleeping and being awake
• no or inconstant reactions during participation
  situations

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Documentation sheet 1 sleep-wake level

• - Regular phases of sleeping and being awake
• no or inconstant reactions during participation
  situations

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Documentation sheet 1 sleep-wake level

• - Regular phases of sleeping and being awake
• no or inconstant reactions during participation
  situations

Participation situations A relaxing situation
with mother B child is transported to another
room C child is in therapy situation
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Documentation sheet 1 sleep-wake level

• - Regular phases of sleeping and being awake
• no or inconstant reactions during participation
  situations

Abilities are observed during participation
situations A Positive vegetative reactions B
Child relaxes C Child seems more awake
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Documentation sheet 1 sleep-wake level

• - Regular phases of sleeping and being awake
• no or inconstant reactions during participation
  situations

Scoring 1 no such participation situation 2
shows ability never or once 3 shows ability
sometimes
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Sleep-wake level examples
3
2 Marco seems sometimes more awake when his
mother reads a favorite story score 3
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Sleep-wake level examples
3
3
1
14 In an adapted sitting position Nathalie
relaxes and seems more awake score 3. No
vegetative reactions score 1
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Documentation sheet 2 perception level
The child reacts reproducibly in
participation-situations
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Documentation sheet 2 perception level
The child reacts reproducibly in
participation-situations
Same participation situations A relaxing
situation with mother B child is transported to
another room C child is in therapy situation
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Documentation sheet 2 perception level
The child reacts reproducibly in
participation-situations
Different abilities are observed during
participation situations A turns towards
activity B smiles or shows joy C makes
uncontrolled movements
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Documentation sheet 2 perception level
The child reacts reproducibly in
participation-situations
Scoring 1 no such participation situation 2
Shows ability never or once 3 shows ability
occasional 4 shows ability frequent
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Perception level examples
20 Tim smiles frequent during bathing situations
score 4
4
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Perception level examples
24 Sometimes Martin turns towards a craft
activity in therapy score 3
3
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Documentation sheet 3 communication level
The child performs purposeful single actions
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Documentation sheet 3 communication level
The child performs purposeful single actions
The child shows abilities that are part of the
activity
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Documentation sheet 3 communication level
The child performs purposeful single actions
The child shows abilities that are part of the
activity
Example 1 child performs one or more single
actions while playing with family (grasps and
holds a Lego block, points to a picture in a book)
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Documentation sheet 3 communication level
The child performs purposeful single actions
Scores 1 does not take place 2 no purposeful
single action 3 occasional single action(s) 4
frequent single action(s)
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Communication level examples
8 Marlies sits with support, headcontrol for a
few seconds score 4
4
4
18 Marlies tries several times to stir the cream
score 4
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Communication level examples
8 Peter sits supported, no single action score
2
2
21 Peter presses occasionaly a switch to let the
rabbit move score 3
3
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Documentation sheet 4 Independence level
The child is getting independent in familiar
context
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Documentation sheet 4 Independence level
The child is getting independent in familiar
context
The child does simple activities
Example 8 the child moves himself for at least
50 meters within the building (wheelchair, walks
with walking-aids, etc.)
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Documentation sheet 4 Independence level
The child is getting independent in familiar
context

• Scoring
• Does not perform activity
• Performs activity but not according criteria
• Performs activity occasional according criteria
• Performs activity frequent according criteria

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3 Denis plays 15 minutes alone score 4
4
4
8 Kevin moves himself independently score 4
21 Felix takes part in a group activity with a
lot of support score 3
3
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How and how often is remi-pro applied

• Within the first week the OT gathers from team
  members and family observations about the child
• The OT herself observes some activities
• The childs abilities are scored using the manual
• Reassessments
• Once a month in the clinic, to decide about
  rehabilitation measures
• Every six months follow-up after discharge

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Third partJulia
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Julia, 6 years

• Normally developed
• Lives with parents in a rural environment
• Brother 4 years, sister Sonja 8 years
• Likes dolls, animals, music, riding a bike, rough
  play
• Bike-accident (hit by a car)
• Severe brain injuries
• Lost consciousness immediately (GCS 3)
• Was intubated and ventilated for 14 days
• Multiple skull fractures, multiple parenchymal
  haemorrhages and sheering injuries

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Three weeks after TBI Julia was admitted for
rehabilitation

• She was in unresponsive wakefulness state
• She had a tetraspastik, no voluntary movements
• She was tube-fed
• She did not fixate, no tracking movements of the
  eyes

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4 weeks after TBI the following abilities were
observed

• Seems more awake when her sister gives her a
  cuddly toy
• Seems more relaxed and more awake when moved and
  during swinging in a hammock
• After hearing a song she takes a deep breath
• Seems more awake when honey is put on her lips

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4 weeks after TBI following abilities were
observed in sleep-wake level

• 3 Seems more awake when her sister gives her a
  cuddly toy
• 12, 24 Seems more relaxed and more awake when
  moved and during swinging in a hammock
• After hearing a song in therapy she takes a deep
  breath
• Seems more awake when honey is put on her lips

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Goals for the next two weeks

• In therapy, Julia turns 3 times to her sister
  while playing
• Julia smiles during a favourite activity like
  swinging, hearing music, washing hair and playing
  with the therapy-dog
• These goals are based on her current abilities
  and educated guesses (did she smile once, move
  her eyes, turn to her sister?)

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8 weeks after TBI following abilities were
observed

• Turned once to mother during cuddling
• Looks occasionally to sister, parents, nurses and
  therapist when spoken to
• Smiles frequently during swinging
• Turned her head once during a craft activity

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8 weeks after TBI following abilities were
observed in perception level

• 1 Turned once to mother during cuddling
• 16, 17, 18 Looks occasionally to sister,
  parents, nurses and therapist when spoken to
• 24 Smiles frequently during swinging
• 25 turned her head during a craft activity

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Goals for the next two weeks

• Julia turns and looks frequently to activities
• Julia looks frequently to different persons when
  spoken to
• These goals are based on her current abilities
  and educated guesses (did she move her little
  finger once, did she perhaps move her head?)

Goals for the next four weeks

• Julia presses 3 times a switch after prompting
• Julia keeps her head upright for 3 seconds

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16 weeks after TBI following abilities were
observed

• She presses 3 times a button to change an image
  at the computer self-initiated

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16 weeks after TBI Julia shows following
abilities and single actions in communication
level

• 18 She presses self-initiated 3 times a switch
  to change an image at the computer score 4
• 23 occassional purposeful interaction during
  play-situation score 3

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Goals for the next two weeks

• 5 times, Julia presses a button during a
  play-situation
• 3 times, Julia chooses with her eyes what she
  wants to taste
• 3 times, Julia grasps an object that is given to
  her during an activity
• These goals are based on her current abilities
  and educated guesses (did she look at an object
  that she wanted, did she open her mouth for yes,
  is she trying to grasp?)

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The remi-pro ability profile of julia at discharge
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Fourth PartThe usefulness of remi-pro
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What do we do with the results

• On individual level
• We can observe and describe changes in the
  different levels and areas during several months
  / years
• We can use the results for collaboration with the
  parents and family
• We can use the results to formulate therapy-goals
  
• For groups for comparison
• We can conduct studies about changes in children
  with different diagnoses

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Remi-pro long term changes in 60 children during
the time from 0ct.2012 febr.2014
n 60 TBI 28 Hypoxie 15 other 17
level
I I I
I I I
I I I
I I I
2 4 6 8
10 12 14
16 18 20 22
24 Months
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Remission from unsresponsive wakefulness (TbI
n9 / hypoxia (n7)
(Hessenauer et. al, unpublished 2014)
13 out of16 children show reproducible reactions
within 24 weeks after injury 8/9 TBI (median 6
weeks) 5/7 hypoxia (median 13 weeks
Hypoxia
SHT
Discussion analysis with Remi-Pro confirms
previous results The Multi Society Task Force
on PVS. N Engl J Med. 1994 3301499-1508
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Remi-Pro will be officially published in Germany
in 2015

• Content a manual with background and
  itemdescriptions for all levels
• A case example how to score
• A CD with the forms and digital scoreforms

• Future projects
• Digital scoreform that shows the changes between
  assessments
• Digital scoreform that shows participation and
  lack of participation

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Thank you for your attentioncontact
ellenromein_at_gmail.com