Who are the People Using Wheelchairs: Development of a Wheelchair Users Registry
ABSTRACT
The Wheelchair Users Registry is a database of individuals, eighteen years of age or older, who have participated or who are interested in participating in assistive technology related research studies. The registry will have representation from various diagnoses that are similar to national statistics, as well as be representative of the age ranges, gender, and ethnicity of wheelchair users. Wheelchair users will be recruited nationwide through personal contact at disability related venues, for example the National Veterans Wheelchair Games and Abilities Expos, as well as through mediums such as the Internet, flyers, magazines and newsletters.
KEYWORDS
Demographics, database, wheelchair, registry
BACKGROUND
Assistive technology is developed to improve the lives of individuals with disabilities. Research is completed on that assistive technology, in order to determine its clinical appropriateness as well as its effectiveness on mobility and overall function. Adequate testing, by representative populations, is needed to ensure that the technology or research will benefit the stakeholders. Overall, most rehabilitation professionals recognize the limitations that exist with the studies completed in rehabilitation: small sample sizes are not ideal for determining whether the device one is testing is effective. To overcome this shortcoming, multi-center studies have been undertaken. Other solutions include accessing already established registries and databases.
Several databases exist, such as the Model Spinal Cord Injury (Model SCI) Systems or the VA databases (Austin Automation Center) 1,2 . Both aforementioned databases have limitations in the populations that have been recruited to participate. For example, the Model SCI systems are limited to individuals with SCI who are located in the area of an SCI Center. The VA databases are excellent sources of data for characteristics of the VA population, but access to these databases are limited to veterans who receive healthcare within the VA, VA investigators, and knowledge of software programs, such as Statistical Analysis Software (SAS) are required to actually access the data. In addition, using the database as a recruitment tool is not realistic, as one would have to obtain approval from many institutions and cooperation from many clinicians to contact their patients directly.
The Health Insurance Portability and Accountability Act (HIPAA) regulates the manner in which subjects, who have previously participated in research studies and thus generated private health information, may be contacted regarding future research studies for which he/she may be eligible to participate. In order to comply with HIPAA, the Wheelchair Users Registry was created. This provides investigators associated with the registry, consent to contact the subjects regarding their future studies, in addition to allowing registry investigators the ability to contact their subjects on behalf of outside investigators. 3
STATEMENT OF PROBLEM
Adequate demographic information regarding wheelchair users is not readily available. Existing databases such as the Model SCI and the VA databases (Austin) are limited in their subject pool and accessibility. A central database with an accurate representation of the various diagnoses that comprise the population of wheelchair users nationwide is essential in creating a nationally representative sample pool for wheelchair related research.
METHOD
The goal of this project is to develop a nationwide registry of individuals who use wheelchairs and are interested in participating in research at the Human Engineering Research Laboratories, located in Pittsburgh Pennsylvania, related to assistive technology. Ultimately, the registry will be able to capture a majority representation from all diagnoses that is representative of the age ranges, gender, and ethnicity of wheelchair users.
Methods for accomplishing goals:
Multiple recruitment strategies are being used:
- In person at organized events such as the National Veterans Wheelchair Games, and the Abilities Expo.
- Magazines/Internet
- Agency newsletters
- Flyers and brochures
If the subject agrees to be consented into the Wheelchair Users Registry demographic, medical, and information about their current wheelchair will be obtained. This information will be used to identify subjects for specific research studies. The directors, Dr. Rory Cooper, Director of the Human Engineering Research Laboratories; Dr. Shirley Fitzgerald, Associate Director of Research; and Dr. Boninger, Medical Director; will review any request by an outside investigator to use the registry. If approval is granted, a registry investigator will query the database to identify potential subjects and will then contact the subject to inform them that they may be a possible candidate in another investigator's study. If the subject is interested in participating in the study, we will ask their permission to have the investigator contact them directly about their study or we will provide them with the investigator's contact information. The subject's information will only be provided to an outside investigator following their approval to do so.
RESULTS
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State – Number of Reported Wheelchair Users – Percentage of National Wheelchair Users US map with 1990 Census Statistics – disability questionnaire. Based on a total of 1,481,622 reported wheelchair users in the United States. |
As of December 2003, there are 386 individual wheelchair users consented to the Wheelchair Users Registry. Of those 386, 41 are temporarily withheld pending correspondence with the subject, or permanently withdrawn from the database. The average age is 59 years. There are 207 males, 132 females, and 47 of unknown gender. The ethnicity is comprised of 25 African Americans, 4 Asians, 284 Caucasians, 13 Hispanics, 9 other, and 51 unknown or not declared. A variety of diagnoses are represented in the database, such as multiple sclerosis, 50; Muscular Dystrophy, 16; Spina Bifida, 11; Cerebral Palsy, 20; Post Polio, 11; Traumatic Brain Injury, 6; Amputees, 18, and Spinal Cord Injury, 191.
Per the 1990 US Census, the number of declared wheelchair users for the United States is 1,481,622, as well the number of declared wheelchair users per state are provided 4 . This demographic information provides researchers with statistics on the location of wheelchair users nationwide. This information can be utilized in order to determine where to recruit subjects to add to the database. Demographic information specific to the wheelchair users is not provided, which limits investigators when recruiting individuals with a specific diagnoses and selection criterion. The Wheelchair Users Registry then provides investigators with subjects that meet specifications applied to the database, which then enables investigators to recruit for research studies.
DISCUSSION
Ultimately, the registry will have representation from all diagnoses that is similar to national statistics, allowing investigators to recruit from a diverse subject pool for research studies. Methods we will employ to achieve our goal for this database include utilizing the World Wide Web to make forms accessible nationwide.
The registry also provides researchers with a list of potential subjects that meet specific criterion for research study participation. Nationwide recruitment is key in developing an accurate representation of the demographic information that comprises the population of wheelchair users. Our goal is to build a database of 5,000 individuals by 2006 and 10,000 by 2008.
REFERENCES
- Veterans Affairs Information Resource Center. Researchers Guide to VA data. Retrieved December 5, 2003. website: http://www.virec.research.med.va.gov
- UAB Department of Physical Medicine and Rehabilitation. National Spinal Cord Injury Statistic Center. Retrieved December 5, 2003. website: http://main.uab.edu/show.asp?durki=10766
- University of Pittsburgh Institutional Review Board. HIPAA. Retrieved December 5, 2003. website: http://www.irb.pitt.edu/hipaa/hipaa.htm
- U.S. Census Bureau. (1990) Disability 1990 Census Table 3 . Retrieved December 5, 2003. website: http://www.census.gov/hhes/www/disable/census/tables/tab3us.html
ACKNOWLEDGEMENTS
VA Center of Excellence (Award number F2181C)
Author Contact Information:
Amy Boyles, BA,
7180 Highland Drive
Building 4, 2 nd Floor,
East Wing 151R-1,
Pittsburgh, PA 15218,
Office Phone (412) 365-4846,
EMAIL: boylesa@herlpitt.org
