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Rehabilitation & Research Training Center on
Aging with Developmental Disabilities

Project Progress Summary

R2Database for Measuring Health Outcomes in Older Adults with ID

Principal Investigator: Phil Davidson, PhD
Co-Principal Investigator(s): C. Michael Henderson, MD & Matt Janicki, PhD
Consultants: Giorgio Albertini, MD & Eduardo Chiodi, PhD


The following sections that need to be filled in and submitted to RRTCADD.

    1. IRB Status
    2. Assessment Tools
    3. Recruitment Status
    4. Data Collection Status
    5. Project Modifications
    6. Results

    1. Publications
    2. Presentations
    3. Trainings
    4. Technical Assistance
    5. Grants Funded
    6. Recognition and Service

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Review of Literature
Hypotheses/Research Questions
Sample Population, Methodology, Data Collection and Measures
Anticipated Findings and their Implications for Future Research
Research Activities
Scholarly Activities


Review of Literature

Survival into later life is increasing among adults with I/DD. Both mean age at death and causes of death for this population resembles outcomes for older persons without I/DD (Merrick, 2002; Janicki, et al., 1999). Later life onset chronic diseases occur with increasing frequency in adults I/DD, but retrospective data from the US, Netherlands, and Australia (Beange, et al., 1995; Evenhuis, et. al, 2000; Janicki, et al., 2002; Janicki & Dalton, 2000; Prasher & Janicki, 2002; ) suggest that prevalence of diseases that threaten both functionality and life may be under-recognized or under-diagnosed. Under-recognition has many negative ramifications for healthy aging, including increased loss of function, increased loss of quality of life, increased costs for health care, greater dependency upon supports, and early mortality. All of these alterable outcomes depend on early diagnosis. The best way to improve diagnostic procedures is to develop practice standards that can be applied in health care settings to facilitate timely identification of morbidity and to track health status over time. In order to accomplish this outcome, more baseline data are needed on large cohorts of older persons with DD.

Identifying morbidity in a timely manner also depends on developing standardized techniques for monitoring health status and identifying disease risk factors. The extent to which pre-morbid conditions exist in large-scale populations of persons with ID has not been ascertained, as most studies have examined convenience samples. Such broad-based information would be of great value in developing practice guidelines, screening and surveillance protocols, and screening programs, which have generally been underutilized. Further, this information would help clinics more effectively target examinations and help service agencies develop better health services planning surveillance checklists. Further, such information could be useful in developing and offering screening programs, which have generally been underutilized. Generic and specialty clinics presented with probability information for select conditions could then more effectively deploy resources and examinations. Finally, such information would assist agencies serving persons with disabilities in health services and preventive program planning.

The proposed project aims to expand and standardize a health outcomes tool and database and to test its validity and reliability so that it can be used for international surveillance of health status and disease risk factors among adults with I/DD. It builds on The Rochester Aging and ID Health Status Project which was established to document the health status of a large cohort of adults age 40 years and older with ID living in community-based residences in the USA and elsewhere. Using the Greater Rochester Area Health Status Survey (GRAHSS), a 53-item questionnaire designed to be completed by health providers to persons with ID (Janicki & Davidson, 1999), we have so far collected data on over 4,500 consumers in the US, Taiwan, and Israel. Preliminary analyses indicated that medical conditions were associated with significantly increased frequencies of behavioral disorders, irrespective of age group. The association between morbidity and behavioral symptoms occurred in all but the oldest age group. The magnitude of the difference compared to healthy cohorts, and the trends across age groups varied by organ system disease. We also observed that about a quarter of the adults had psychiatric diagnoses and that the frequency of such diagnoses did not decrease with age.

The GRAHSS has proven feasible for use in community settings, and shows promise as a tool for establishing a large, multi-site database on health outcomes for research and practice, but it has not yet been formally validated; nor has its reliability been determined. Moreover, it has never been used to follow health status prospectively.


Hypotheses/Research Questions

The proposed project has four specific aims:

Aim 1. To expand, revise and validate the GRAHSS, including adding items relating to oral health, determining the correspondence between clinical information from chart review data and survey ratings obtained from respondents for a sample of older adults with ID. The main hypothesis is that the revised GRAHHS will yield valid comprehensive data on health status among older persons with ID.

Aim 2. To generate tables of morbidity from combined GRAHSS data taken from the US, Taiwan, and Israel and disseminate these tables to agencies to help establish health outcome benchmarks. The combined data will indicate cross-cultural trends in health outcomes across the age span and will provide a powerful source for predicting health trajectories among adults with ID as they age.

Aim 3. To implement new health outcomes data collection in three sites in the US, including New York State and Chicago using the revised GRAHSS. This project will replicate our earlier studies, and provide data on oral and behavioral health. These domains, excluded from the initial version of GRAHSS, represent significant sources of morbidity in older adults with lifelong disabilities, and are often overlooked in establishing causes for functional decline. We will also establish the feasibility of conducting multi-site studies, and provide investigators with a new dataset for further health outcome and health utilization studies

Aim 4. To create an expanded version of the GRAHSS survey that includes an electronic medical record, which could be used by clinics to track health status, and which could serve as a source of extensive health status information for further studies.


Sample Population, Methodology, Data Collection and Measures

Aim 1: Revision, Expansion, and Validation of the GRAHSS
A panel of five to 10 experts in the fields of dental health, behavioral health, geriatrics and DD will convene for a one-day meeting to review the GRAHSS, recommend revisions to current items, and add items assessing oral health and behavioral health. The revised GRAHSS-II will then be field tested for wording and form on a small cohort of no more than 10 subjects recruited from the ARC of Monroe, whose medical director is Dr. Henderson.

A cohort of 100 subjects over age 39 years with ID living in community residences or family settings in the Rochester area will be recruited. First, each subjectís (1) primary health care provider or designated agency nurse, (2) service coordinator, and (3) a close relative will be asked to complete the GRAHSS-II. Then (4) project staff will review each consumerís clinical records to independently complete the GRAHSS-II. Multiple regression analysis and will be used to establish the sensitivity and specificity of each category of responder, compared to the chart review data (considered the gold standard for this project).

Aim 2: Large Scale Analysis of Existing International GRAHSS Data
The large-scale analysis will consist of a sample of 4684 culturally diverse adults with ID age 39 and older from New York State, Israel, and Taiwan. This includes 1374 from New York state (Janicki et al, 2002), 2,283 from Israel (Merrick et al, in review) and 1,072 from Taiwan. Data collection for the Taiwan project will be completed in June 2003. The data will be analyzed in Rochester, NY. The New York and Israeli databases are already in a data file in Rochester.

Written consent to combine the datasets was obtained from principal investigators of the individual datasets, Drs Merrick (Israel) and Wang (Taiwan) (see letters of agreement). We will combine the three datasets and, with consultation from the Department of Biostatistics at the University of Rochester, we will analyze the combined dataset following an analysis plan similar to the one used initially with the New York and the Israeli datasets. The sampling frames for each administration of the GRAHSS was unique and therefore weights for each dataset will be created to adjust for the different sampling methods. The resulting data will be used to verify and extend some hypotheses suggested in both the New York and the Israeli papers independently. One such hypothesis posited under-recognition of health morbidity, especially for risk factors for coronary heart disease and musculoskeletal disorders. These data will also be used to generate age group morbidity tables that will be useful for health services planning.

Aim 3: Replication of Previous Studies using GRAHSS-II
This phase will utilize the GRAHSS-II to begin a new database. We will obtain a new sample from groups of older persons with ID living in community residences and family settings in New York State (Arc of Monroe in the Rochester area serving both urban, suburban and rural areas and Young Adult Institute in New York City), and one urban site in Chicago, (Chicago Arc) with which project investigators have formal consultative arrangements. We will seek consent from and survey approximately 100 consumers in each site for a total sample of 300 consumers. The methodology and analysis plan will be identical to that used for previous studies using this instrument (as described in Janicki, et al., 2002).

Aim 4: Development of Expanded Clinical Electronic Database
We will collaborate with IT colleagues at the University of Rochester Medical Center and the RRTC at UIC to develop an expanded electronic version of the GRAHSS-II suitable for use as an electronic medical record. The expanded database will use GRAHSS-II as its primary screen. A coding system based upon an electronic medical record in use for pediatric aged individuals with ID at Casa di Cura San Raffaele in Rome, Italy will be adapted for use with older adults. Drs. Giorgio Albertini (Pediatric director) and Eduardo Chiodi (informatics consultant who developed the database) have agreed to provide their consultation at no cost to the project. This record will permit the primary screen to open supplemental screens providing detailed and specific clinical information regarding the consumerís status relative to each organ system. The final version of this database will be field tested in Rochester on a cohort of older persons with ID (N = 100) being followed in Strong Center Geriatric Assessment Clinic. All records will be entered into the new database and updated for a period of one year as consumers are seen for follow-up appointments in the Clinic.


Anticipated Findings and their Implications for Future Research

Taken together, these five projects should verify the validity of the GRAHSS, identify the most reliable reporter to complete it, and create and field-test a method for implementing large-scale data collection using an electronic version of the GRAHSS. The resulting tools should improve and expand monitoring of health status of individuals with ID as they age, and allow project investigators to build a large versatile database that can be used for future health studies. The data resulting from this project will include a snapshot of the health status, and risks for health compromises in the largest cohort of older individuals with disabilities ever studied. They should be of immediate interest to local and state governments in the US who have the responsibility to plan and implement services. The international nature of the database will also be of interest to other governments outside the US. The resulting methods for tracking health should provide agencies and governments with a straightforward way to update initial estimates of health status and anticipate the need to modify service systems with changing patterns of health status.


Research Activities

IRB Status

Tools Being Developed
Rochester Health Status Survey II

Recruitment Status
Recruitment on-schedule.

Data Collection Status
Data collection is currently on-schedule. Alpha test of revised survey form completed and focus group held. Survey form modified based upon feedback from focus group. Beta test on 100 ARC of Monroe consumers to began in November 2004.

Project Modifications
No project modifications.

Project Progress to Date
Results pending.


Scholarly Activities




Technical Assistance

Grants Funded

Recognition and Service
Davidson, P. Co-chair, AUCD Aging SIG. Co-Chair, IASSID Aging and ID SIRG