Methods:
A variety of outcome measures were considered in the development of this
quality improvement project. The tests that were considered included the
Peabody (PDMS), Test of Gross Motor Development (TGMD), Movement
Assessment Battery for kids (MABC) and BOT-2 (see Table 3 )(11).
Ultimately, the BOT-2 was selected for the following reasons: 1) The
BOT-2 is norm referenced, valid and reliable (8), 2) the age range of
the test met the goal to assess comprehensive motor skills in school
aged children and 3) the information that the BOT-2 provides is specific
and relevant to the skills that are necessary for participation in
school, recreational and peer activities. The BOT-2 also includes
specific strength and balance sections, which are skill areas that may
be impacted in children with CF due to gene expression in skeletal
muscle, or side effects of medications on the vestibular system.
Once BOT-2 was selected as the screening tool, children between 4 and 12
years of age with a diagnosis of CF based on a sweat chloride ≥60mEq/L
and/or the presence of two known disease-causing variants in the CF gene
were eligible to participate in this quality improvement project. An
algorithm was developed to guide timing of the BOT-2 assessment in CF
clinic and follow up recommendations (Figure 1 ). Eligible
children were identified in pre-clinic rounds. In an effort to identify
a clinic visit where the number of additional assessments (i.e., labs,
imaging) were not needed, we targeted the half birthday visit for the
BOT-2 evaluation. To increase the number of BOT-2 assessments over the
year, the BOT-2 assessment was performed at the end of a hospitalization
in a small subset, with historically infrequent outpatient clinic
visits, when acute symptoms of a pulmonary exacerbation were improved.
Parents were educated on the purpose of the assessment and observations
of their child’s performance and follow-up PT recommendations were made
based on the results.
The BOT-2 requires a testing kit and scoring booklet, which costs
$685(11). The equipment that is needed for the gross motor sections are
a BOT-2 balance beam, a line on the floor, a tape measure, two cones, a
scoring sheet, and a scoring booklet. An exercise mat can also be used
for some of the strength tests but is not required. Testing was
performed by two trained, board-certified PTs (only 1 PT required to do
each test), and typically took 25-30 minutes to complete the 26 gross
motor tasks to compile a full gross motor BOT-2 score. Children can
perform the test in a clinic room or gym space, but testing does require
a 50 foot shuttle run course. PTs found it helpful to partner with other
CF care team members during clinic when BOT-2 testing was performed.
With child and parent permission, PT would take a child to the gym to
complete testing while other care team members (i.e., social worker,
psychologist or dietitian) met with the child’s parents. Separating
children and parents was not a barrier to completing testing, as
children generally expressed excitement about participating in BOT-2
testing during their clinic visit.
Data collected during the BOT-2 evaluation included scale scores,
standard scores, percentile rankings, descriptive categories (well below
average, below average, average, above average, well above average), and
the total motor composite (TMC), an average of all subsections of the
test. As defined by the BOT-2 tool, a percentile ranking of less than
18% was considered below average (3 to 17%) (10). A percentile ranking
of less than 25% was also recorded since this qualifies a child in
Colorado for school district and state services. Scale scores are
assigned for the following components of the BOT-2: bilateral
coordination, balance, running speed and agility and strength with
normal scale score values defined as 11 to 19. Standard scores (normal
values 41-59) and percentile score are given for body coordination
(bilateral coordination plus balance) and strength and agility (running
speed and agility plus strength). The descriptive categories of below
average and well below average (<2%) indicate impairment. We
utilized these scores and rankings to then customize individual exercise
plans and follow up.
Our CF center clinical database was utilized to collect demographic data
for all participants including age, sex, BMI, number of lifetime
hospitalizations (defined as a hospital stay of 3 or more days), CF
genotype, lung function including forced expiratory volume in 1 second
(FEV1) and forced vital capacity (FVC) and the presence of any of the
following comorbidities: CF related diabetes, type I diabetes, asthma,
Gastroesophageal Reflux Disease, history of intestinal surgery, anxiety,
depression, Attention Deficit Hyperactivity Disorder, toe walking,
gastrostomy tube, and other miscellaneous conditions (scoliosis, short
gut, migraines, congenital heart disease). This quality improvement
project was approved by Children’s Hospital Colorado Organization
Research Risk & Quality Improvement Review Panel (ORRQIRP).