A COMMUNITY BASED PARTICIPATORY ACTION

RESEARCH STUDY  

Overweight and Obesity in Individuals with Intellectual and

Developmental Disabilities

Research Team

Nursing: K. Fisher, PhD; T. Hardie, EdD & C. Polek PhD

Physical Therapy: M. O’Neil, PhDNutrition: A. Ventura, PhD Special Education: M. Miller, PhD Health Sciences: Informaticist: P. Sockolow, DrPHService agency: KenCrest Services E. Shulkusky (Director of Healthcare Services) D. Gregoire (Director of Development) F. Loomis (Board Member)

Intellectual and Developmental Disability (I/DD)

Intellectual Disability = Limitations in intellectual functioning (IQ < 70) Onset before age 18. Limitations in adaptive skills that interfere with ADLs.

Developmental Disability = Severe, chronic disability = likely to continue

indefinitely Manifested before age 22 Functional limitations in 3 or more areas: self-care,

receptive/expressive language, learning, mobility, self-direction, capacity for independent living, economic self-sufficiency.

Prevalence

~4.6 million to 7.7 million people i.e. 1.5% to 2.5% of general population US Census (2011) = 311,591,917

About 30 million families are directly affected by a person with I/DD at some point in their lifetime. President’s Committee for People with Intellectual

Disability

Issue = Health Disparities

Marginalized groupHigher health risksLower rates of health promoting behaviorsLower socio-economic statusIssues with accessing servicesUnique environmental considerationsLack targeted programs to address their unique

needsHealth Care Team lacks knowledge of their unique

needs

Health Disparities Continued

Underrepresented in research Experience stigma associated with their primary Dx Designated medically underserved population by AMA (December

16, 2011).

Like other Americans, persons with mental retardation (MR) grow up, grow old, and need good health and health care services in their communities. But people with MR, their families and their advocates report exceptional challenges in staying healthy and getting appropriate health services when they are sick. They feel excluded from public campaigns to promote wellness. They describe shortages of health care professionals who are willing to accept them as patients and who know how to meet their specialized needs.

US Surgeon General’s Office. (2002): Closing the Gap: Report of the surgeon General’s Conference on Health Disparities and Mental Retardation; p. xi

 

Community Based Participatory Research

An applied, participatory process that includes collaboration of community agencies, key stakeholders and academic researchers in: Conceptualization Active planning, Implementation, and Evaluation of research.

Goals of CBPR: to influence change in community health, systems, programs and health care policies.

Our Partnership Goals:

To identify and work on programs at KenCrest for unhealthy weight targeting overweight and obesity.

To develop health screening tool for caregivers and care recipients

To achieve foundation funding River Crest Grant to conduct chart review – provide

preliminary data for further study.To apply for federal funding

Overweight/Obesity and I/DD

Consistently report higher rates of obesity in adults with I/DD worldwide when compared to general population (Stedman & Leland, 2010).

Associated with: hypertension, diabetes, dyslipidemia, CAD, stroke, osteoarthritis, sleep disturbances, some cancers.

Those with I/DD at risk for Obesity/Overweight because of:

Genetics: Froelich’s Prader-Willi, Down syndrome (DS) Reportedly 86% of teens with DS are overweight

or obese May store fat differently or have altered nutrient

or energy needs (Humphries, et al, 2009)Gender:

Higher prevalence of obesity among women with I/DD “the gender effect is accentuated, placing women with ID at particular risk.” (Melville et al, 2007 p. 225)

Those with I/DD at risk for Obesity/Overweight because of:

Nutrition – considered vulnerable or at risk for malnutrition according to American Dietetic Association (2004)

MedicationsEnvironmental influences = lack of nutrition

knowledge, limited control over food purchasing, food planning or food preparation; finances.

Physical inactivityLiving arrangements = less restrictive (own

home; family home) = have higher prevalence of obesity

Nutrition and Exercise

Nutritionists have not validated a dietary intake assessment for adults with I/DD because of significant barriers to collecting valid data.

Challenges = problems with memory, comprehension, dexterity, literacy, communication, recording, estimating quantities

Physical Activity guidelines are also lacking in adults with I/DD

National Health Interview Survey (NHIS) (1985-2000)

Annual cross-sectional household interview survey

Measures = general health status, acute/chronic conditions, impairment/functional limitations and use of medical services.

Proxy info provided for those not able to respond due to physical/cognitive limitations.

National Health Interview Survey (NHIS) (1985-2000)

Sample = adults with I/DD in community (own home, family home)

Findings higher % of obese adults with I/DD compared to general population = also reflects an increase in obese I/DD over 16 yr period % overweight is similar in both populations

“In summary, a large proportion of adults with intellectual disability was likely to be either obese or overweight.” (Yamaki, 2005. p. 7)

Overweight and Obesity Among Adults With ID Who Use I/DD Services in 20 U.S. States (2011).

Compared National Core Indicators program of 20 states in 2008-2009 with Natl Health & Nutrition Examination Survey: NHANES (2010)

Findings: those with ID not different than general population i.e. Obesity in NCI sample = 33.6% (represents ~2/3 or 62.2% of sample)

Obesity in US sample = 33.8%

Overweight and Obesity Among Adults With ID Who Use I/DD Services in 20 U.S. States (2011).

Found: higher prevalence of obesity among women with ID; those with DS and milder ID.

Found living arrangements: highest prevalence among individuals living in own home (42.8%) and lowest among institutional residents (18.6%).

Unhealthy weight

Dec, 2011 = defined for this effort as overweight or obese to be a priority for a first project.

Plan: Meetings with Administrators (4) & Nursing Staff (2);

Literature Review Health Record Review Development of healthy weight screening

instrument.

Record Review: Preliminary Findings

N=20 = 65% male (13) Mean age = 47.5 Years (16-73)All = dual diagnosisAverage no of psych meds = 3.45Average no of other meds = 5Health care visits/18 month period = 41.8

Primary Axis 1 Diagnosis

Mild50%

Moderate40%

Severe10%

ID Diagnosis

Axis2 & Axis 3 (7.9 co-morbid diagnosis)

BIPOLAR

DEPRESSION

SCHIZOPHRENIA

ANXIETY

ADD

AUTISM

INSOMNIA

PERSONALITY DISORDER

0 2 4 6 8 10 12 14

Mental Health Diagnosis

Series1

90% overweight or obese N= 19

Under Weight Normal Over Weight Level 1 Obese Level 2 Obese Level 3 Obese0

1

2

3

4

5

6

0

2

5 5

2

5

BMI Categories

Under WeightNormalOver Weight Level 1 ObeseLevel 2 ObeseLevel 3 Obese

IDS-TILDA

Sixty one percent of Irish adults with ID are overweight or obese

There was good access to physicians and dentists but one in three adults with an ID reported that they found it difficult to make themselves understood when speaking with health professionals.

http://www.tcd.ie/Communications/news/pressreleases/pressRelease.php?headerID=2020&vs_date=2011-9-1

IDS_TILDA

Many in the IDS-TILDA sample, particularly those in the younger age cohorts, reported experiencing good health but there were significant concerns in terms of cardiac issues (including risk factors), epilepsy, constipation, arthritis, osteoporosis, urinary incontinence, falls, cancer, and thyroid disease. 

References

American Dietetic Association (2004). Position of the ADA: Providing nutrition services for infants, children and adults with DD and special health care needs. Journal of the ADA 104: 97-107.

CDC (NCBDDD) Developmental Disabilities Homepage http://www.cdc.gov/ncbddd/dd/

CDC FASTSTATS: Obesity and Overweight http://www.cdc.gov/nchs/fastats/overwt.htm

Harris, J (2006) Intellectual disability: Understanding its development, causes, classification, evaluation, and treatment. Oxford University Press, Inc New York.

Humphries, K. Traci, M. & Seekins, T. (2009) Nutrition and Adults with Intellectual or Developmental Disabilities: Systematic Literature Review Results. Intellectual and Developmental Disabilities. 47(3): 163-185.

References

Melville, C. Hamilton, S., Hankey, C., Miller, S. & Boyle, S. (2007). The prevalence and determinants of obesity in adults with intellectual disabilities. Obesity Reviews. 8: 223-230

Moran, M. (12/16/11) AMA Says Intellectual Disability Warrants ‘Underserved’ Designation. Psychiatric News (46)24: 8a American Psychiatric Association

Morstad, D. (2012) How prevalent are intellectual and developmental disabilities in the United States? http://bethesdainstitute.org/document.doc?id=413

Stancliffe, R., Lakin, K., Larson, S., Engler, J., Bershadsky, J., Taub, S., Fortune, J. & Ticha, R. (2011) Overweight and Obesity Among Adults With Intellectual Disabilities Who Use Intellectual Disability/Developmental Disability Services in 20 U.S. States. American Journal on Intellectual and Developmental Disabilities. 116(6): 401-418.

 

References

Stedman, K. & Leland, L. (2010) Obesity and intellectual disability in New Zealand. Journal of Intellectual & Developmental Disability. 35(2);112-115

US census state and county quick facts (2011) at http://quickfacts.census.gov/qfd/states/00000.html

US DHHS (2012) The President’s Committee for People with Intellectual Disabilities. http://www.acf.hhs.gov/programs/pcpid/

US Surgeon General’s Office. (2002): Closing the Gap: Report of the surgeon General’s Conference on Health Disparities and Mental Retardation.

Yamaki, K. (2005) Body Weight Status Among Adults With Intellectual

Disability in the Community. Mental Retardation 43(1): 1-10