QoL 3: Assessing Neurological and Behavioral Function among Disease Groups and across the Lifespan:

1
QoL 3 Assessing Neurological and Behavioral
Function among Disease Groups and across the
Lifespan the NIH ToolboxJin-Shei Lai, Ph.D.,
OTR/L, Edward Wang, Ph.D., Richard Gershon,
Ph.D., Cindy Nowinski, Ph.D.on behalf of the
Toolbox Motor Team. Center on Outcomes, Research
and Education (CORE), Evanston Northwestern
Healthcare and Northwestern University, Evanston,
IL

• NIH TOOLBOX
• The NIH Toolbox, part of the NIH Blueprint for
  Neuroscience Research, seeks to develop brief yet
  comprehensive assessment tools measuring motor,
  cognitive, sensory and emotional health and
  function. Upon completion, the Toolbox will be
  available for use in longitudinal epidemiologic
  studies and prevention or intervention trials for
  people ages 3-85.
• An early task of the project was to identify core
  functional constructs (FCs) within each domain.
  Using motor function as an example, we document
  the FC selection process here.

BACKGROUND Brain tumors are the most common form
of childhood solid tumors. Due to improved
treatment technology, over half of those treated
survive longer than 5 years. However, it has been
a challenge to compare function and quality of
life for patients and/survivors with brain tumors
to other disease groups partly due to 1) lack of
uniformity among measures across disease groups,
and 2) lack of measures that demonstrate stable
psychometric properties across the lifespan that
enables longitudinal symptom monitoring. The
purpose of this presentation is to introduce the
NIH Toolbox that is expected to minimize the
above research obstacles.
METHODS AND RESULTS
A link to the on-line survey was emailed to 232
clinical and epidemiological researchers between
November 2006 and January 2007

• Response rate 63.4 (147 of 232)
• 58 male
• area of expertise 57 adult only 18 pediatric
  only 25 adult and pediatric

• In-depth Interview
• N12
• 58 male
• an average of 24 (SD3) and 21 (SD9) years of
  research and clinical experiences

A follow-up consensus meeting consisted of the
NIH project team, external advisory group, and
Toolbox steering committee members
Constructs to be included in the Toolbox are
locomotion, balance, dexterity, strength, and
endurance
CONCLUSIONS An online information collection,
in-depth interviews, and a consensus meeting were
used to identify key FCs of motor function.
Similar procedures were used for domains of
cognitive, sensory and emotional health and
function. An instrument development plan for each
domain has been completed. The instrument
development will be completed in summer 2008 with
norming and validation to start in winter 2008.
We anticipate the final Toolbox to be available
in 2011. Ultimately, it can serve as a national
resource for the scientific community that can
facilitate further understanding of childhood
brain tumor patients and/or survivors with
comparison to the US general population and other
disease groups.
This project has been funded in whole or in part
with Federal funds from the National Institutes
of Health, under Contract No. HHS-N-260-2006-0000
7-C. (PI Richard Gershon)