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Overweight and Obesity in Individuals with Intellectual and Developmental Disabilities. A community based participatory Action Research Study. Research Team. Nursing: K . Fisher, PhD; T . Hardie , EdD & C . Polek PhD Physical Therapy: M. O’Neil, PhD Nutrition: A. Ventura, PhD

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overweight and obesity in individuals with intellectual and developmental disabilities

Overweight and Obesity in Individuals with Intellectual and Developmental Disabilities

A community based participatory Action Research Study

research team
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)

intellectual and developmental disability i dd
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.
prevalence
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
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

health disparities continued
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
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
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
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
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)
those with i dd at risk for obesity overweight because of1
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

nutrition and exercise
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
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 20001
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
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 20111
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
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
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

ids tilda
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 tilda1
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
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.

references1
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.

references2
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