Functional Outcome Profile: Assessing Brain Injury Impact on Survivors & Family Ron Skelton, Ph.D. Psychology, University of Victoria For Presentation: web.uvic.ca/psyc/skelton/ Michael Joschko, Ph.D. Neuropsychology Services, QACCH Vancouver Island Health Authority

1 Premises  Traumatic brain injury (TBI), stroke and other acquired brain injuries (ABI) have variable outcomes affecting many areas, each to a different degree.  Recovery from TBI or stroke takes years, often requiring extensive rehabilitation.  Rehabilitation professionals need a way to find out which are the areas in greatest need of rehabilitation, to improve daily functioning and lessen the impact of the brain injury on family members (carers).  To discover where people are having problems, you should ask them. However, they may not be able to recall all problems on their own and may need to be asked about specific areas.  Rehabilitation should be able to demonstrate gains to clients, family and funders.

2 Functional Outcome Profile Design  The FOP is a 90-minute structured interview of survivors and co-resident family member (carer)  It covers wide range of everyday functioning, activities and quality of life, based ICDH-2 and consultation with Rehabilitation Professionals.  It solicits ratings of problem frequency and impact on survivor and significant other, but only in areas where problems are acknowledged.  Provides a detailed, quantitative overview for clinicians to identify needs and track gains and losses over time.

Study Methods  12 pairs of ABI survivors and family members interviewed 3 times at 6-month intervals  Ratings on Visual-analog scales of frequency, impact, satisfaction, and importance  Impact of problem rated as impact on self by both survivor and significant other, providing measure of “carer burden”.  Questions  48 new questions, oriented to problem areas (35), activities (3), quality of life (10)  17 areas covered by Scales of Independent Behaviour – Revised ® (SIB-R)  Levels of independence/dependence (14), Problem Behaviour (3)

4 Results Problems were reported in all areas of the FOP and SIB-R, by survivor, significant other, or both. Proportion of Responders FOP AreasSIB-R Areas

5 Results Ratings of Problem Frequency show that some problems occur more often than others. Median Reported Frequency FOP Areas

6 Results Ratings of problem impact, activities, and satisfaction show that brain injury impacts all areas, and affects both survivors and significant others. Outcome FOP AreasSIB-R Areas SIBR is not sensitive In this population

7 Results FOP shows that in many areas, outcome of brain injury was worse for family members (red bars) than survivors (yellow bars). Average differences between Self- and significant other-ratings, with the top and bottom of the bars showing the ratings given by each, and the colour of the bar indicating the direction of the difference. Good Bad Outcome Differences between impact on survivors and significant others.

8 Results FOP frequency and outcome ratings were sensitive to change over time, but SIBR was not.

9 Conclusions  All 12 pairs reported the FOP interview to be worthwhile, revealing.  One parent said that looking at everything together like this helped them to see how many positive things were happening in their son's life.  All areas were endorsed by interviewees, and no additional areas were suggested.  The FOP provided a comprehensive overview of survivor’s rehabilitation needs to improve daily functioning and lessen the burden on family members.  So, FOP is a promising tool for  Identifying rehabilitation targets  Tracking change over time (For clients, therapists, and funders)

10 Current Research  We are shortening the administration time by reducing the number of items required to assess independence, behavior problems, and certain areas of activities of daily living.  We have added a component to specifically identify areas of greatest concern.  We are testing the FOP in multiple clinical settings for its utility to rehabilitation professionals (Neuropsychologists, Occupational Therapists, Physiotherapists, Social Workers, Speech Pathologists, and Physiatrists).