Longitudinal Health and Intellectual Disability Study (LHIDS):
Examining the Effects of Modifiable Health Behaviors on
Health and Function in Adults with ID


  1. To examine changes across time in the prevalence of five health behaviors (physical activity, dietary habits, smoking, alcohol intake, and oral hygiene) and their impact on health and function in adults with ID by gender, age group, level of ID, and residential setting.
  2. To examine the impact of baseline musculoskeletal biomarkers (i.e., bone mineral density, strength, balance) across time on health (i.e., with particular reference to falls) and function (i.e., functional limitations) in adults with ID.
  3. To examine the impact of health behavior changes across time on psychosocial well-being and community participation in adults with ID.

Project Staff

Kelly Hsieh, PhD (Principal Investigator)
James Rimmer, PhD (Co-Principal Investigator)
Sumithra Murthy, MBBS, MPH

Information about Current Project

Progress to Date

Related Research Findings
Other Products
An Introduction to the Longitudinal Health and Intellectual Disability Study (LHIDS)
In the general population, adherence to simple health behaviors such as not smoking, maintaining a healthy weight, physical activity, alcohol in moderation, and a healthy diet, may prevent a host of negative health outcomes. Studies that track a representative group of people across time, such as the Framingham Heart Study are instrumental in establishing national guidelines on health promotion and disease prevention. Up until now, no such study has ever been undertaken for persons with ID. The lack of longitudinal data sets limits our ability to meet the health needs of people with ID.

Working in partnership with
Special Olympics International (SOI) and with support from the National Institute on Disability and Rehabilitation Research (NIDRR), a research team headed by Drs. James Rimmer and Kelly Hsieh at the Rehabilitation Research and Training Center on Aging with Developmental Disabilities is conducting a longitudinal study to follow a cohort of 1,620 adults with disabilities over a four year period (2010-2013). What we learn from this study will have important implications for medical service delivery, risk prevention, and health policy for persons with ID.

Adults with ID (ages 18 years and older) were recruited through Special Olympics International (SOI) events (World Winter Games in Idaho in February 2009, the USA National Summer Games in Nebraska in July 2010, and other state SOI charters),

Geographic Distribution of LHIDS Participants


Wisconsin Managed Care Organizations (MCOs), various service agencies (e.g., Easter Seals, The Arc, and Lucanus), and other avenues of recruitment (e.g., Facebook page, newsletters advertisements, and recruiting materials distributed at conferences) during March 2010 and January 2011. In general, more than half (55.3%) of participants are located in the Midwest region of the United States as well as the Northeast region (20.2%), South region (18.6%), and West region (5.9% - shown above).



Longitudinal and Intellectual Disability Survey

Department of Disability and Human Development
University of Illinois at Chicago

Kelly Hsieh, Ph.D., Principal Investigator
Office: (312) 413-1530

The LHIDS Survey is divided into three sections: Health & Function, Health Behaviors and Sociodemographics.

Health & Function. Questions were divided into three sub-sections: (a) Health Status: informant-rated health status including healthy days and overall health; (b) 23 Chronic Health Conditions (e.g., hypertension, high cholesterol, diabetes, dental disease, heart disease, cancer, etc.) and whether or not medication was being taken for the condition; and (c) Physical Function (e.g., use of an assistive aid, performing physical tasks, falls).

Health Behaviors. Health behaviors were separated into five domains: (a) Physical Activity/Exercise including SOI participation and training and sedentary behaviors (i.e., TV viewing time); (b) Weight Control and Dietary Habits; (c) Smoking and Alcohol; (d) Oral Hygiene; and (e) Social Participation. Social participation was assessed by recording how often respondents engaged in five community activities within the last month, adopted from

Food Pyramid

the Community and Social Participation instrument developed by Heller, Hsieh, and Rimmer (2004).

Sociodemographics. Sociodemographics included age, gender, race, residential setting, etiology, level of ID, and employment/day services.

Survey Development
The survey was developed in three phases: pre-survey preparation, pilot testing, and survey administration. Each of these phases is described below.

Phase I (Pre-Survey Preparation). A comprehensive review of existing health survey instruments was conducted (e.g., NHANES, NHIS, BRFSS University of Michigan Health Survey, etc.) to determine the most appropriate questions for our cohort. After reviewing these surveys, a list of questions was assembled and reviewed by the project team. Steps were then taken to revise/refine survey questions to make them more appropriate to adults with ID and their respondent (e.g., family member, health care provider). After completing a draft list of questions, an expert panel reviewed them for content, clarity and significance to the target population and provided feedback on each item. After revising the instrument, the Survey Research Laboratory (SRL) at the University of Illinois at Chicago conducted an extensive analysis of the survey items to improve wording, clarity and design. The survey was then refined several more times with feedback from the SRL and expert review panel. Afterwards, the survey was given to 10 informants who cared for an adult with ID to ensure that questions were comprehensible and appropriate to their son or daughter.
Phase II - Pilot Testing. The paper-pencil survey was pilot tested for usability and item clarity with a sample of 10 informants. Volunteers were recruited through the Rehabilitation Research and Training Center Advocacy Advisory group (parents, siblings, and self-advocates), and staff in service agencies. Test-retest reliability was conducted with 15 primary caregivers and 15 direct support staff (n=30) with test-retest intervals ranging from 2 weeks to 6 weeks. 51.5% of the retests were conducted within 2 weeks; 21.2% within 2-3 weeks; and 27.3% within 3-6 weeks. For the categorical questions, test-retest reliability (k-statistic) ranged from 0.68-0.95, and for the interval questions, the test-retest reliability (intra-class correlation coefficient) ranged from 0.75 to 0.94.

Phase III - Survey Administration. A unique computer-generated identification number was placed on each survey included in the survey packet sent to each primary family caregiver or direct care staff. The survey packet consisted of the survey, a letter explaining the purpose of the study, and a participant information sheet. The paper survey took 20 to 30 minutes to complete by hand and 15-20 minutes to complete online.