Weight Loss Treatment for People
with Disabilities
Parent Supported Weight Reduction in Adolescents and
Young Adults with Down Syndrome
Richard K. Fleming
E. K. Shriver Center at
UMASS Medical School
Psychiatry Research Day
UMASS Medical School
Oct. 21, 2009
“An epidemic of childhood obesity and overweight,
to which social, economic, and human behaviors
have contributed, threatens long-term medical,
psychosocial, and financial consequences beyond
US society's current capacity to respond.
How the epidemic is controlled will be about the art
and practice of social and behavioral change as
well as the art and science of medicine.”
(Lavisso-Mourey, 2007, JAMA, 298, p. 920)
Overweight/Obesity in Down Syndrome
(DS) and Intellectual Disabilities (ID)

Prevalence estimates of obesity (BMI ≥
30kg/m2) in adults with DS in five small
studies1
– Males:
25%-71%
– Females: 42%-56%

Lower Resting Metabolic Rate2

Healthy People 2010, Ch. 6: Promote
the health of people with disabilities
1. Bandini, L.G. Obesity In Nehring W.M. (Ed). Health Promotion
for persons with intellectual and developmental disabilities.
The state of scientific evidence. American Association on
Mental Retardation, 2005, pp. 30-31,Washington D.C.
2. Luke, A., Roizen, N.J., Sutton, M., Schoeller, D.A. Energy
expenditure in children with Down syndrome: Correcting
metabolic rate for movement. Journal of Pediatrics, Vol. 125,
1994, 829.
Current RCT: Parent Supported Weight Reduction
in Down Syndrome
NIDDK, R03DK070627-01A2, Fleming (PI)
Research Team
(alphabetical)







Linda Bandini, PhD, RD
Carol Curtin, MSW
James Gleason, MS, PT
Melissa Maslin, MS
Aviva Must, PhD, Sarah Anderson, PhD and Keith
Lividini (Tufts)
Renee Scampini, MS, RD
Elise Stokes, MS, BCBA
Parent-Supported Weight Reduction in Down
Syndrome (PSWR)

Participants: Adolescents/young adults w/Down syndrome, 13-

Conditions/groups:
26 yrs.
–
–
–
–

–
–
–
–
–
–
–
Treatment = 16 sessions over 6 mos.; follow-up at 12 months
Nutrition/Activity Education (NAE)
Parent-Supported Weight Reduction (PSWR) (= NAE +
Behavioral Intervention)
Random assignment, “waves” with up to 5 participants per
group.
Measurement:
BL → 10 wks. → 6 mos. → 12 mos.
Weight /height, BMI
Bioelectrical impedance: % body fat
Accelerometry (physical activity): 7-day durations
3-day food record → categorical analysis
Knowledge pre-/post-test
Child and parent satisfaction
Nutrition & Activity Education (NAE)

Prior to sessions:
–
–
Individualized Healthy Eating Plan
Individualized Physical Activity Plan

Session features: Lecture (brief, simple),

Sessions:
instructions, demonstrations, games, practice
with feedback, reinforcement, “incentives”
1. Good Nutrition & Healthy Eating
2. Stay Fit, Stay Strong, Keep Moving All
Day Long
3. Fruits, Vegetables & Low-Fat Dairy
4. Physical Activity: Warm-Ups & Stretching
5. Serving Sizes
6. Why is Physical Activity Good for Me?
7. Meal Planning
8. More Meals!
9. Activities at Home and in the Community
10. Snack Attack: Healthy Snacking, Mindful
Eating
11. Strength-Building Activities
12. Measure Food, Measure Success!
13. Physical Activity Review
14. Eating Around Town: Eating Out
15. Favorite Physical Activities
16. Potluck Dinner Celebration
Parent Supported Weight Reduction
(PSWR)

Monitoring
– Daily self-recording of
selected diet and physical
activity behaviors

Goal setting
– Weekly high priority goals
– Report to group

Feedback & Reinforcement
– Feedback from group
– Individual reinforcement
w/adolescent

Environmental arrangements
(stimulus control)
– Assessment
– Altered arrangements

Behavioral contracting
– Weekly, negotiated
Trial Design
0 wks
10 wks
6 mos
Intensive Period
12 mos
Taper Period
Follow-up
Wave
NAE
(N)
PSWR
(N)
Baseline
10 wk
6 mo
I
3
3
10/07
12/07
4/08
II
4
3
3/08
5/08
9/08
III
3
5
3/09
5/09
9/09
Baseline Characteristics of Participants
Characteristic
NAE (n = 10)
PSWR (n = 11)
Age (yr)*
20.5 (4.1)
20.5 (2.4)
Sex*
Male
Female
1 (10)
9 (90)
3 (27.3)
8 (72.7)
Ethnicity/race**
White
Hispanic
10 (100)
0
10 (90.9)
1 (1.1)
IQ (K-BIT)*
Verbal
Non-verbal
Composite
54.1 (8.6)
53.8 (12.6)
49.1 (9.3)
51.6 (12.0)
46.0 (5.6)
44.8 (6.3)
Weight (kg)*
Male
Female
100.6
74.7 (15.3)
96.1 (12.9)
72.9 (10.0)
Height (cm)*
Male
Female
154.4
144.3 (6.4)
154.9 (4.8)
145.9 (3.5)
36.5 (6.9)
35.8 (5.4)
Body mass index
(BMI)*
Parent BMI  30**
Neither
Either or Both
5 (50)
5 (50)
6 (54.5)
5 (45.5)
Max Parent Education
Level**
High/Trade School
Some College
BA Degree
Advanced Degree
1 (10)
1 (10)
2 (20)
6 (60)
4 (36.4)
2 (18.2)
2 (18.2)
3 (27.3)
* Reported as mean (SD)
** Reported as number (%)
Results of Paired and Independent Samples
T-tests
NAE
10 week Δ
6 month Δ
-0.58 (1.1)
0.82 (2.8)
-1.98 (2.0)**
-2.97 (4.0)*
(Education only)
PSWR
(Behavioral)
Regression Model* Results
Weight Change (PSWR vs NAE)
B
SE
p value
PSWR
NAE
-0.98
referent
0.85
0.27
PSWR
NAE
-3.38
Referent
1.75
0.07
10 weeks
6 months
* adjusted for wave
Discussion




NAE were PSWR interventions were well suited to the
population and well received.
Both were replicated successfully at a new site and
with a new (trained) treatment team
Small pilot, but with some very suggestive findings
– The PSWR group lost marginally significantly more
weight than NAE alone
Small numbers precluded inclusion of a no-treatment
group
Conclusions


PSWR represents a promising approach to weight loss
in adolescents with Down syndrome
A full scale trial on a larger sample appears to be
warranted