PABI Plan - The Sarah Jane Brain Project

Family Perspective:
Without early identification of “mild” TBI and proper treatment, the family bears the sustained
burden from the injury, including financial, social, familial, psychological, and educational.
Severe TBI will most likely present with obvious signs and symptoms; “mild” TBI often does
not. Identification and assessment of “mild” TBI therefore requires collaboration with medical,
psychological, educational, familial and social communities. Parents/ caregivers need to alert
medical professionals when they notice unexplained changes in their child/young adult, even if
they are not aware of a possible cause. They may then still be dismissed by the health care or
educational professional as being “overprotective,” their parenting skills might be questioned or
the changes in the child/young adult might be misattributed to a psychiatric or related
misdiagnosis. When this occurs, parents/caregivers must learn to continue advocacy efforts for
their child. Parents need to understand that the psychological, emotional, behavioral and
cognitive challenges can persist long after the injury has occurred, and that there can be a period
of latency before symptoms reappear. This will be another role for the SJBF Centers to assist
parents who suspect their child suffers from “mild” TBI but cannot get an adequate diagnosis.
Furthermore, the development of clinical care systems that evaluate and treat the particular needs
of children with “mild” TBI and their families must be a focus.
Solutions
A Nationwide Master Plan for “mild” TBI care must be developed to ensure equal access and
treatment of this injury. Plans will be developed to accomplish the following:
1. Best Practice Standards: Development of a “best practices” national system of pediatric
“mild” TBI care across the continuum from time/site of injury (acute) to recovery (post-acute or
long-term). No current “standards” exist for the systematic assessment and follow-up of “mild”
TBI, resulting in substantial variability in practice. Depending on the setting, its goals and
resources as well as the tools and clinical flow pathways will differ, and so must be better
defined and standardized for efficient and effective care. The Nationwide Master Plan will help
to define standards of effective evidence-based practice. A survey of available model systems
will be conducted to develop a best practice model. The Nationwide Master Plan will further:
a. Define a plan for the development of “mild” TBI outpatient clinics.
b. Articulate appropriate linkages between the acute care Emergency Dept./ Primary Care
Physicians with the “mild” TBI outpatient clinics.
c. Develop key criteria/ indications for referral to the outpatient “mild” TBI clinic for specialty
services among medical, school, sports/recreation systems.
d. Survey the available training programs with a focus on “mild” TBI service delivery,
establishing a “mild” TBI-specific curriculum to incorporate the best practices clinical
model.
e. Identify key school personnel to oversee/ direct and assist return-to-school programming.
f. Develop a nationwide systematic plan to implement International Concussion in Sport Group
recommendations for sport-related “mild” TBI.
g. Facilitation of more effective individualized treatment, thereby improving recovery and
reducing adverse outcomes.
h. Improved communication among health care professionals, school personnel, coaches and
parents and family is crucial to improve understanding and identification of actual/potential
problems.
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