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INTRODUCTION

Anecdotal stories suggest that people with disabilities receive different screening levels for cancer than do the general population. In addition, the similar stories suggest that smoking prevalence may be elevated among groups of people with certain disabilities. If these suspicions are accurate, it might require a policy change in how screening and prevention programs are planned and implemented, so as to better serve the needs of this population.

Because a major portion of people with marked disabilities are included in Oregon’s Medicaid population, we used that population to determine if people with disabilities in certain domains experienced cancer outcomes that were suggestive of being screened less or of having higher smoking prevalence. In cooperation with officials in the Oregon Medical Assistance Programs (OMAP), the state Medicaid office, we sought to determine whether impartial solid evidence existed that would validate the anecdotal suggestions.

RESEARCH OBJECTIVE/RESEARCH QUESTION

To research the possibility of less cancer screening and higher smoking prevalence among groups with disabilities of certain types, we addressed the following research questions:

Do Medicaid clients with certain disabilities have higher rates of smoking related cancer than Medicaid clients without known disabilities?

Are Medicaid clients with certain disabilities and who develop cancer of the female breast, cervix, or colorectum, diagnosed at a more advanced stage of disease than Medicaid clients without known disabilities?

If our analysis of the data obtained to answer these questions resulted in significant and convincing evidence that the answer to either or both of these research questions was “Yes,” we then proposed to develop suggested policy changes that would address the issues. Because there is a spectrum of possible reasons why an affirmative answer to the research questions might occur, we planned a review of a sample of medical records of representatives of the groups experiencing the undesirable outcomes, to obtain information about the possible etiology and resolution of the problem.

METHODS

We obtained an unduplicated file of all Oregon Medicaid clients for the years 1994-98. There were over a million individuals on the file, with an identifying number. For all OMAP data, each individual is identified by a unique number termed the “prime” number. In addition, we obtained a separate name and address file for these individuals, with initial and all subsequent addresses, and with information on exact dates starting and stopping coverage. This file had over 15 million entries. A third eligibility file with about seven million entries contained the eligibility basis for each member. By linking these three files on the prime number, we were able to create a file with named individuals and their demographic characteristics, with a usual address, and with the program for which they qualified for eligibility. In addition, for a subset of the individuals in the eligibility file, some were receiving aid based on a disability from a sister agency, then named the Senior and Disabled Services Division (SDSD). Again, using the prime number, we linked the file of SDSD recipients to the OMAP file appending information on the evaluation of the functional disability done by SDSD caseworkers, and creating our initial research file.

Lastly, using the names, addresses, dates of birth, sex, and if available, the Social Security Numbers for individuals on the initial research file, we linked to the Oregon State Cancer Registry (OSCaR) for the years 1996-1998, obtaining any diagnosed cancers, along with date of diagnosis, site (type) of cancer, and stage at the time of diagnosis. This file containing individuals, eligibility codes and dates, caseworker disability assessments, and cancer data constituted our final research file. The final research file included 805,608 individuals for the years 1996-98. Mental retardation information was also available on a separate sister agency file, linked by prime number to the final research file, but for most analyses the numbers were too small for meaningful analysis.

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