| OUTCOME
MEASURES [ back
to Recovering from a Brain injury ]
Professionals in brain injury rehab agree that following any
TBI, there is a period of "spontaneous healing"
after which the survivor may be left with residual deficits
that he may compensate for through learned changes in his
behavior, e.g. carrying a Dictaphone or notebook to keep a
record of information or avoiding inter-personal situations
likely to trigger cognitive flooding or an emotional outburst.
Professionals in brain injury rehab disagree about when rehab
should be initiated or terminated, which patients should receive
it, what it should consist of, how much it really helps, how
to measure the outcomes of patients who have gone through
rehab and with regard to those patients, how to separate out
gains in function which would have resulted anyway from spontaneous
healing vs. those resulting from participation in rehab. They
are important issues, for which there are no universally accepted
scientific answers. A significant obstacle to the scientific
collection of the data necessary for clear resolution of those
disputed issues, is the enormous complexity of brain-behavior
relationships (which we are just beginning to understand)
and the infinite variation in the physical, cognitive, emotional
and social circumstances of the individuals who sustain brain
injuries.
A starting point for any inquiry into this area is, what do
we mean by "outcome?" The researchers and clinicians
who use that term may be referring to mortality (did the treatment
prevent death?); to the level of self-care (can the person
wash and dress himself?); to the level of independence achieved
by the survivor (is he confined to a skilled nursing facility,
able to live in a half-way house or able to live on his own
in the community?); to the level of re-integration into the
community (is the person once gain working, volunteering or
socializing?); to the level of quality of life (is the person
enjoying himself, is he creative, is he productive, has he
found meaning in his new existence?).
Once we decide on what we mean to measure by the term "outcome,"
we need to decide how to measure outcome and how to measure
the individual factors that affect it. Where outcome is defined
as physical survival, the analysis will focus on the capabilities
of the rescue and trauma center teams. Where outcome refers
to some measure of functionality (be it independence in self-care,
community re-integration or quality of life), we look at different
factors. Quite a few of these factors are backward looking,
and take account, of who the person was before his injury,
the so-called "pre-morbid" period. Others are forward-looking
and take account of events occurring after the brain injury.
The factors which influence quality of life outcomes for persons
with a TBI include: severity of primary brain injury; existence
of secondary brain injury from uncontrolled brain swelling
or anoxia from airway obstruction or lung collapse; age at
time of injury; presence of complicating injuries (spinal,
limb, internal organs); pre-morbid IQ; pre-morbid educational
level; pre-morbid personality and psychological characteristics,
such as history of anxiety, depression, ADHD, OCD; the socio-economic
bracket of the injured party and whether he lived in a rural
vs. urban area (something related to availability of medical
and rehab services); whether the patient received rehab; how
long after the injury rehab was initiated; the quality, duration
and intensity of rehab; the capacity of the patient to benefit
from rehab (which can be diminished by lack of awareness,
depression or tendency to become angry or violent around others);
extent and quality of family support and employer support
during recovery; availability of a good TBI support group
made up of other survivors; and a host of other variables.
There are many "test instruments" of varying sensitivity,
which are currently in use to assess the functional outcome
of persons with acquired brain injury from trauma. Which tests
are used in a given setting depends on what we want to know,
when we want to know it and why we want to know it. A variety
of tests are likely to be used depending on the knowledge,
experience and preferences of the clinicians, and the context
of test administration - is it clinical or forensic. If clinical,
is it during the acute stage, during the rehab process or
after post-acute rehab has been completed. If forensic, is
it a civil proceeding (such as a personal injury or worker's
compensation case), a criminal matter (such as the insanity
defense) or an administrative matter (such as child protective
service proceeding to take custody of a child).
The most common instrument used immediately after the brain
injury is sustained is the Glasgow Coma Scale, which tells
the hospital whether the patient needs emergency care or specialized
neuro-trauma care with CT scanning and evaluation by a neuro-surgeon.
Test instruments which may be used to determine when the patient
is ready for rehab, which rehab program is most suitable or
how the patient is responding to rehab are: the Rancho Los
Amigos Cognitive Functioning Scale, the Galveston Orientation
and Amnesia Test, the Agitated Behavior Scale, the Mini-Mental
Status Exam, the Neurobehavioral Cognitive Status Exam, the
Functional Independence Measure (FIM), Functional Assessment
Measure (FAM) and the Readiness to Change Questionnaire. Amongst
the test instruments commonly used after completion of rehab,
some measure "global" outcomes in a simplified format,
and others measure the fine details of outcome with regard
to its nuances and subtleties. Global outcome measures include
the Glasgow Outcome Scale, the Disability Rating Scale, Supervision
Rating Scale and World Health Organization manual of classification
of impairments, disabilities and handicaps. Outcome measures
that attempt to discern subtle disability include the Mayo-Portland
Adaptability Inventory, the Craig Handicap Assessment and
Reporting Technique, Patient Competency Rating Scale and Satisfaction
with Life Scale.
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