Overweight and Obesity in Individuals with Intellectual and Developmental Disabilities

1. Overweight and Obesity in Individuals with Intellectual and Developmental Disabilities A community based participatory Action Research Study

2. Research Team Nursing: K. Fisher, PhD; T. Hardie, EdD & C. Polek PhD Physical Therapy: M. O’Neil, PhD Nutrition: A. Ventura, PhD Special Education: M. Miller, PhD Health Sciences: Informaticist: P. Sockolow, DrPH Service agency: KenCrest Services E. Shulkusky (Director of Healthcare Services) D. Gregoire(Director of Development) F. Loomis(Board Member)

3. 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 3or more areas: self-care, receptive/expressive language, learning, mobility, self-direction, capacity for independent living, economic self-sufficiency.

4. 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

5. Issue = Health Disparities Marginalized group Higher health risks Lower rates of health promoting behaviors Lower socio-economic status Issues with accessing services Unique environmental considerations Lack targeted programs to address their unique needs Health Care Team lacks knowledge of their unique needs

6. 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

7. 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.

8. 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

9. 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.

10. Those with I/DD at risk for Obesity/Overweight because of: • Genetics: • Froelich’sPrader-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)

11. 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) Medications Environmental influences = lack of nutrition knowledge, limited control over food purchasing, food planning or food preparation; finances. Physical inactivity Living arrangements = less restrictive (own home; family home) = have higher prevalence of obesity

12. 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

13. 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.

14. 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)

15. 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%

16. 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%).

17. 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.

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

19. Primary Axis 1 Diagnosis

20. Axis2 & Axis 3 (7.9 co-morbid diagnosis)

21. 90% overweight or obese N= 19

22. 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

23. 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.

24. 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.

25. 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.

26. 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