Transcript Remi-Pro: a standardizes method to document the course of

Autors:
Ellen Romein MSc.OT
Melanie Hessenauer, OT
Clinic for Neuropediatrics and NeuroRehabilitation, Epilepsy Center for Children and
Adolescents, Schön Klinik Vogtareuth
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Fast recovery
Vegetative
state
coma
Locked-inn
syndrome
Minimally
consious state
recovery
Permanent
v.s.
death
Brain death
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No eye-opening
 Unable to follow instructions
 No speech or other forms of communication
 No purposeful movement

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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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1.
2.
3.
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
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3 – 8 points means: coma
Teasdale and Jennet, 1974
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response
Eye opening
Best verbal
response
Normal Aggregate Score
Birth to 6 months
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Less than 6–12
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months
Less than 1–2 years 12
Less than 2–5 years 13
More than 5 years
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Reilly et al., 1988; Simpson et al., 1991
Best motor
response
sponaneous
4
To speech
3
To pain
2
none
1
oriented
5
words
4
Vocal sounds
3
cries
2
none
1
Obeys commands
5
Localizes pain
4
Flexion to pain
3
Extension to pain
2
None
1
8
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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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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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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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 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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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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In every level we look at
three participation areas:
A. Free play, leisure, wellbeing
B. Locomotion,
communication, ADL
C. School, therapy, chores
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In every level we look at
three participation-areas:
A. Free play, leisure, wellbeing
B. Locomotion,
communication, ADL
C. School, therapy, chores
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In every level we look at
three participation-areas:
A. Free play, leisure, wellbeing
B. Locomotion,
communication, ADL
C. School, therapy, chores
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- Regular phases of sleeping
and being awake
- no or inconstant reactions
during participation situations
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- Regular phases of sleeping
and being awake
- no or inconstant reactions
during participation situations
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- 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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- 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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- 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
133
14: In an adapted sitting position
Nathalie relaxes and seems more
awake: score 3.
No vegetative reactions: score 1
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The child reacts reproducibly in
participation-situations
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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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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
30
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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The child performs
purposeful single actions
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The child performs
purposeful single actions
The child shows abilities
that are part of the activity
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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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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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The child is getting
independent in familiar context
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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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The child is getting
independent in familiar context
Scoring:
1. Does not perform activity
2. Performs activity but not
according criteria
3. Performs activity occasional
according criteria
4. 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 33
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 Within
the first week the OT gathers from
team members and family observations about
the child
 The OT herself observes some activities
 The child’s 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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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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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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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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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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 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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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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



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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 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?)
 Julia
presses 3 times a switch after
prompting
 Julia keeps her head upright for 3 seconds
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
She presses 3 times a
button to change an
image at the
computer selfinitiated
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18: She presses self-initiated 3
times a switch to change an
image at the computer –
score 4
23: occassional purposeful
interaction during playsituation – score 3
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5
times, Julia presses a button during a playsituation
 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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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 therapygoals
For groups for comparison
 We can conduct studies about changes in
children with different diagnoses
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n = 60
TBI = 28
Hypoxie = 15
other= 17
level
I
2
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4
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6
I
8
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10
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12
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14
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16
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Months
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I
24
(Hessenauer et. al, unpublished 2014)
13 out of16 children
show reproducible
reactions within 24
weeks after injury
Mann-Whitney U
(one-tailed)
P < 0,05
8/9 TBI (median 6
weeks)
5/7 hypoxia (median 13
weeks
SHT
Hypoxia
Discussion: analysis with Remi-Pro confirms previous results*
* The Multi Society Task Force on PVS. N Engl J Med. 1994; 330:1499-1508
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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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