Each potential adult with ID or family who contacts the research team will be called and
screened for eligibility in the study. To determine eligibility, screening questions will
include asking if the adult participant has a formal diagnosis of ID; report of
intellectual ability level will be confirmed with direct cognitive testing during the
screening assessment visit using scales completed by the participant and caregiver. Also
at the screening visit, caregivers will complete the dementia screener for the
participants, and participants will be provided with an Actigraph GT9X Link device so
they can complete a weeklong physical activity baseline measure. At the second study
visit, participants and caregivers will complete the pre-assessments (described below and
attached), and participants will have their body composition measured. Questions to all
scorable assessments will be required to prevent missing data. Select demographic
information will have an additional "prefer not to answer" choice. Participants will
complete demographic measures, primary and secondary outcome measures, and feasibility
and acceptability measures across the first two study visits. Those who qualify will be
randomly assigned to one of two conditions: (1) initial intervention or (2) waitlist
control. Individuals assigned to the waitlist control group will begin the intervention
after the initial group completes post-assessments.
The 16-week intervention includes: (1) a weekly group fitness class for adults with ID,
(2) web based training and resources for coaches and exercise professionals; (3) weekly
coaching meetings for coaches and adults with ID, and (4) daily/weekly interactions with
the PACE interactive web based dashboard for adults with ID.
A post-assessment visit will be conducted to repeat the pre-assessment measures, and a
subset of participants and coaches will also complete an interview to answer open-ended
questions about their program experiences. A 12-month follow-up visit will also be
scheduled to measure body composition again.
Brief description of measures to be completed by Caregivers as follows:
Vineland Adaptive Behavior Scales-3: (VABS) (Vineland-3) is a standardized assessment
tool that utilizes semi-structured interview to measure adaptive behavior and support the
diagnosis of intellectual and developmental disabilities, autism, and developmental
delays. Interviews are expected to take 1-2 hours and will take place during the
screening visit.
National Task Group-Early Detection Screen for Dementia: (NTG-EDSD) This measure was
adapted from the Dementia Screening Questionnaire for Individuals with Intellectual
Disabilities (DSQIID) and can be used for the early detection screening of those adults
with an intellectual disability who are suspected of or may be showing early signs of
mild cognitive impairment or dementia. The NTG-EDSD is not an assessment or diagnostic
instrument, but an administrative screen that can be used by staff and family caregivers
to note functional decline and health problems and record information useful for further
assessment. This assessment will take place during the screening visit.
Add Health Wave 5 Questionnaire: Questions will be used from the Wave 5 Survey including
questions on background (biological sex, gender, race/ethnicity), health and health care
(co-occurring conditions and medical treatments, illness and physical limitations, and
fitness tracking (experiences using fitness tracking devices, current exercise habits).
This measure will take place during the pre and post study visits.
Waisman Activities of Daily Living (W-ADL): The W-ADL is a caregiver-report that measures
activities of daily living and assesses functioning. It has demonstrated high internal
consistency (Cronbach alphas= .88-.94) and reliability over time (Kappas= .92-.93) in
adults with ID. This measure will take place during the pre and post study visits.
Brief description of adult with ID measures as follows:
The Leiter-3: is a widely used nonverbal measure of intelligence and cognitive abilities
that is suitable to use for individuals with cognitive delays, speech or hearing
problems, Attention Deficit Hyperactivity Disorder (ADHD), or traumatic brain injury. The
battery subtest scores are converted to a scaled score and the sum of the scaled scores
yields a nonverbal intelligence quotient (IQ)/composite score. This assessment will take
place during the screening visit.
World Health Organization Quality of Life Brief Version Assessment (WHOQoL-BREF and WHO
Disabilities Module): The WHOQoL-BREF and WHO Disabilities module is an abbreviated
39-item version of the original WHOQOL tool that has been used in adults with ID. The
domain scores will be used to measure the general quality of life (Overall, Health,
Physical, Psychological, Social, Environment, and Disabilities Module). This measure will
take place during the pre and post study visits.
NIH-Toolbox Cognitive Battery (NIHTB-CB): The NIHTB-CB will measure mental and cognitive
functioning. It has been validated in individuals with ID and adults across the spectrum
of Alzheimer's disease and age-related cognitive decline. It is an iPad-based assessment
of memory, executive function, and crystallized intelligence. This measure will take
place during the pre and post study visits.
NIH-Toolbox Emotional Battery: The NIHTB-EB will measure emotional health across several
domains: Psychological Well-Being, Social Relationships, Stress and Self-Efficacy, and
Negative Affect. This is an iPad-based assessment that will take place during the pre and
post study visits.
Physical Activity Measures: These measures will take place during the pre and post study
visits.
Grip strength (NIH Toolbox): This test consists of squeezing the hand dynamometer for a
1-rep max strength assessment.
The 4-Stage Balance Test: This test consists of four standing positions that are
progressively harder to maintain.
30-Second Chair Stand: This test consists of participants getting up from a chair without
using their arms. They get up and sit down repeatedly for 30 seconds. Their score is the
number of times they can get up from the chair
Timed Up & Go (TUG): This test consists of participants getting up from a chair, walking
10 feet across the room around a cone, and sitting back down.
2-Minute Walk Endurance: This test consists of participants walking as fast as they can
for two-minutes up and down the hallway of the assessment spaces.
Bod Pod: This scan will measure body composition using Air Displacement Plethysmograph
(ADP). Participants at the University of North Carolina site will be briefed on the Bod
Pod and sit inside for up to 5 minutes. This measure will take place during the pre- and
post-study visits, as well as the one-year follow-up visit.
DXA Scan: This scan will measure body composition using dual energy X-ray absorptiometry.
Participants at the University of Arkansas site will be briefed and lay on the DXA scan
table for around 15 minutes. This measure will take place during the pre- and post-study
visits, as well as the one-year follow-up visit. Participants who are pregnant, think
they may be pregnant, or have had unprotected sex in the last 30 days will not receive a
DXA scan.