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URMC » Pediatrics » Divisions » Developmental_disabilities » Padd

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Neurodevelopmental and
Behavioral Pediatrics

Program in Aging and Developmental Disabilities

The Program in Aging and Developmental Disabilities participates in the University of Illinois at Chicago’s Rehabilitation Research and Training Center (RRTC) on Aging with a Developmental Disability. This project is funded by the US Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research.

The RRTC has the following goals:

• Improve health and function of adults with I/DD across the lifespan
• Enhance consumer-directed home and community based long-term care
• Reduce environmental barriers to health and community participation
• Improve instruments and measures to assess outcomes of interventions to improve health and function

PADD’s involvement in the RRTC centers on the conduct of a project entitled Neurodevelopmental Conditions and Lifespan Health Outcomes. The project is lead by Matthew P. Janicki, Ph.D. and Philip W. Davidson, Ph.D. Other investigators include C. Michael Henderson, M.D., Laura M. Robinson, M.P.H., Kelly Hsieh, Ph.D. and Jon Meccarello, Ph.D.

• Need for Research: Mean age at death and causes of death of adults with I/DD are similar to the general population. With extended longevity, later life onset chronic diseases seem to occur with increasing frequency in adults with I/DD, but retrospective data from a number of countries suggest that the prevalence of diseases that threaten both functionality and life may be under-diagnosed and under-treated. Under-recognition has many negative ramifications for healthy aging; including increased loss of function; lower quality of life; and greater health care costs, need for supports, severity of conditions, and early mortality. However, all of these are alterable and can be mitigated by early diagnosis; the best way to improve diagnostic procedures is to understand disease age-related prevalence and trajectories. The development of practice standards applicable in health care settings can facilitate timely identification of morbidity and track health status over time. Hence, more accurate and comprehensive data are needed based on large-scale cohorts of adults with I/DD, including those with neuro-developmental conditions, whose aging trajectories have rarely been empirically examined.
• Project History: The SCDD has had an active research program on health outcomes in older adults with I/DD since the early-1990s. This program has been lead by Philip W. Davidson, Matthew Janicki, and C. Michael Henderson. The initial focus was on aging effect on behavioral and psychiatric morbidity among adults with I/DD. In 1996, Drs. Davidson, Janicki and Henderson began to develop a survey instrument top permit data collection on a wider variety of health conditions, from large numbers of older adults with I/DD. This project quickly expanded to include data collection sites in the US and abroad. Since that time, the data collection instrument, now called the Rochester Health Status Survey (RHSS), has been revised and expanded. The project’s focus has also been narrowed to identifying risk factors for morbidity that threatens maintenance of function and life. The project now includes many collaborators both in the US and in other countries.

RHSS Survey Instruments

• Background: The Rochester Health Status Survey-II v.2 (RHSS) is a 12-page questionnaire composed of four sections: 1) demographics, 2) general physical health, 3) medical conditions including lifetime prevalence, point prevalence (last 24 months), and incidence (last 3 months), and 4) health services utilization and health surveillance. The survey has 51 single or multiple response questions with a yes/no option and space for comments. The RHSS (kappa = .31-.85) was designed to be completed by a health care professional who is familiar with individuals’ health status and draws primarily from data  in the subject’s medical records (links to pubs).  The RHSS has been adapted for use in several countries and has produced a robust database of over 4,500 adults with I/DD from the US, Taiwan, and Israel. It has already been translated and cross-translated to Chinese, Hebrew, Portuguese, and Spanish and will be similarly translated and cross-translated to Dutch and Polish.
• Forms (pdf versions available here)
• RHSS-II v.2 Research Version
• RHSS-II Service Version
• RHSS-II v.2 Research Version with Oral Care Supplement
• RHSS-II v.2 Users’ Manual

Major Findings from Analyses Conducted on RHSS Data

• Health trajectories are similar among those persons with and without I/DD among persons of equivalent age
• Risk factors for later life morbidity appear similar among persons with and without I/DD
• Most life threatening morbidities occur with similar prevalence in people with and without I/DD
• Age-related functional ability declines with increasing organ system morbidity among people with I/DD
• Some life-threatening conditions, such as Type-II diabetes, can be identified in people with I/DD in primary care settings
• Presence of I/DD may complicate identification of some age related morbidities that may compromise function and survival
• Lifelong mental health problem diagnoses decline with increasing age, but age-associated diagnostic conditions remain static with age
• Health trajectories appear to be more similar than dissimilar with increasing age across cultures
• Obesity is at least as prevalent among older people with I/DD as it is among people without I/DD
• Monitoring of risk factors for later life morbidities is as accessible among people with I/DD as with people without I/DD
• Compromising mental health problems seem to decline in prevalence with increasing age among people with I/DD
• Specific neurodevelopmental disabilities, such as cerebral palsy, may have altered health trajectories
• Some trends are emerging about health issues among select neurodevelopmental conditions, but more data are needed to permit specific analyses to be conducted
• Health and function can be a function of cultural nutritional and wellness practices

Project Publications

• Davidson PW, Houser KD, Ladrigan P, Cain NN, Sloane-Reeves J, Quijano L, Matons L, Giesow V, Henderson CM (1997).  Aging effects on behavioral and psychiatric disorders in persons with intellectual disability living in community settings: Preliminary report. In Psychische Storungen bei erwachsenen and alteren Personen mit geistiger Behinderung. G Weber (Ed.).
• Janicki MP, Dalton AR, Henderson CM and Davidson PW (1999).  Mortality and morbidity among older adults with intellectual disabilities: Health services considerations. Disability and Rehabilitation. 21 (5-6), 284-294.
• Davidson PW, Thorpe L, Bouras N, Moss S, Prasher V, Schupf N, Weber G, Vicari  S, Henderson CM, Jacobson J, Wang H, and San Nicolas H. (1999). Biobehavioral Issues and Healthy Aging in Adults with Intellectual Disabilities. Technical Manual prepared for the 10th International Roundtable on Aging and Intellectual Disabilities.
• Henderson CM, Davidson PW (2000). Comprehensive adult and geriatric assessment.  In M. P. Janicki & E. Ansello (eds.), Community supports for aging adults with lifelong disabilities.  Baltimore, Paul Brookes Publishing, Inc., pp 373-386.
• Henderson CM, Janicki MP, Davidson PW and McCallion P. (2000) Health status of older adults with intellectual disabilities in New York State: Health implications. Journal of Intellectual Disability Research 44;313 (Abstract 483).
• Janicki MP, Evenhuis HM, Henderson CM, Beange H, Lennox N, Chicoine B, Thorpe L, Davidson PW, Walsh PN, Heller T, Schupf N, van Schrojenstein Lantman-deValk H, Hogg J, Lucchino R, Wang K and Kalache A. (2000) Healthy aging: Commentary on the IASSID/WHO report on aging with an intellectual disability. Journal of Intellectual Disability Research 44;334, (Abstract 559).
• Janicki MP, McCallion P, Davidson PW and Henderson CM. (2000) Health status of older adults with intellectual disability in New York, USA: Health service implications. Journal of Intellectual Disability Research, 44;334, (Abstract 561).
• Thorpe L, Davidson PW, Janicki MP, & Working Group (2000). Healthy aging --- adults with intellectual disabilities: biobehavioral issues. J Applied Res Intellect Disabil, 14, 218-228.
• Janicki MP, Davidson PW, Henderson CM, McCallion P, Taets JD, Force LT, Sulkes SB, Frangenberg E, Ladrigan PM. (2002). Health characteristics and health services utilization in older adults with intellectual disabilities living in community residences. J Intellect Disabil Res 46, 287-298.
• Davidson PW, Janicki MP, Ladrigan P, Houser K, Henderson CM, Cain NC. (2003). Association between Behavior Problems and Health Status in Older Adults with Intellectual Ability. Aging and Mental Health, 7(6), 424-430.
• Davidson PW, Prasher V, and Janicki MP (Eds). Mental Health, Intellectual Disabilities, and the Aging Process. Oxford, UK: Blackwell Science, 2003.
• Janicki MP and Davidson PW. (2004) Gaining Consensus on a Health and Social Welfare Agenda for Older Adults with Intellectual Disabilities. Journal of Health and Welfare, 1(1).
• Merrick J, Morad M, Davidson PW, Wexler O, Janicki MP. (2004). Health Profile and Health Service Utilization in Older Adults with Intellectual Disability Living in Residential Care Centers in Israel. Amer J. Ment Retardat, 109(10), 413-420.
• Merrick J, Davidson PW, Janicki MP, Wexler O, and Henderson CM. (2004). Older Adults with Intellectual Disability (ID) living in Residential Care Centers in Israel. J Intellect Disabil Res, 48, 427 (Abstract).
• Morad M, Nelson NP, Merrick J, Davidson PW, Carmeli E. Prevalence and risk factors of constipation in adults with intellectual disability in residential care centers in Israel. Res Develop Disabil, 2007;28(6):580-6.
• Wang KY, Hsieh K, Heller T, Davidson PW, Janicki MP. (2007). Carer reports of health status among adults with intellectual/developmental disabilities in Taiwan living at home and in institutions. J Intellect Disabil Res 51(Pt 3),173-183.
• Davidson PW, Henderson CM, Janicki MP, Robinson LM, Bishop KM, Wells A, Garroway J, Wexler O.  Ascertaining health-related information on adults with intellectual disabilities: Development and field testing of the Rochester Health Status Survey. J. policy  pract intellect Disabil. In press.
• Henderson CM, Robinson LM, Davidson PW, Haveman M, Janicki MP, and Albertini G. Overweight status, obesity and risk factors for coronary heart disease in adults with Intellectual disability. J. policy  pract intellect Disabil., in press
• Henderson CM, Acquilano JP, Meccarello JC, Davidson PW, Robinson LM, Janicki MP. Health status and adaptive skills in older persons with intellectual disabilities. J. Policy  Pract Intellect Disabil., in review
• Robinson LM, Davidson PW, Henderson CM,  Janicki MP, Merrick J, Morad M, Wang L, Hsiu K, Bishop KM, Wexler O. Comparing Health Status Among Older Adults with Intellectual  and Developmental Disabilities from New York, Taiwan and Israel. J Intellect Disabil Res. In review

Research and products were supported in part by:

• Grant# H133B031134 to the University of Illinois at Chicago from the US Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research, and
• Grant# 90DD0590 to the University of Rochester from the US Department of Health and Human Services, Administration on Children and Families, Administration on Developmental Disabilities.

If you would like additional information on research that PADD is working on please contact, Dr. Kathleen Bishop at 585-275-6604 or kathleen_bishop@urmc.rochester.edu