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Central Cancer Registry

Hispanic Cancer Cases
Are We Coding Them Correctly?

By Deirdre Rogers
North Carolina Central Cancer Registry
State Center for Health Statistics

For the 2002 Annual Meeting
North American Association of Central Cancer Registries

Table of Contents

• Abstract

The U.S. Census Bureau identifies people of Hispanic origin by response to a question asking for self-identification of a person's origin or decent. People of Mexican, Puerto Rican, Central and South American, Cuban, or Dominican decent are considered Hispanic. In 1998, 11.2% of the U.S. population consisted of Hispanic people. In North Carolina, Hispanic people made up approximately 2% of the population.

As with other groups of the population, cancer is a problem among the Hispanic population. However, it is very hard to study cancer in this group due to the underreporting of cancer patients of Hispanic decent. In North Carolina, 0.46% of the total population was diagnosed with cancer in 1998. This holds true with the non-Hispanic population of the state. Yet, only 0.12% of the Hispanic population of the state were diagnosed with cancer in 1998.

This presentation intends to show that North Carolina is incorrectly coding many Hispanic cancer patients, thus lowering the rates of cancer in this special population. Patients coded as non-Hispanic or unknown in regard to Hispanic origin will be examined to determine probable Hispanic patients using the list of 639 heavily Hispanic surnames, place of birth, and death files.

• Methods
• A list of cancer patients coded non-Hispanic or unknown Hispanic origin was obtained from the cancer database for 1995-1998.
• Surnames and maiden names were compared to the list of heavily Hispanic surnames produced by the U.S. Census Bureau to obtain a list of possible Hispanic cancer patients.
• The 297 possible Hispanics were then matched to the 1995-1999 death files to confirm any as Hispanic. Also, missing birthplace and maiden names were obtained from the death files.
• Birthplace and name were examined to determine highly probable Hispanics.
• Coding of Hispanic Ethnicity in North Carolina
• Race is coded separately from Hispanic origin.
• NAACCR* codes are used to identify Hispanics.
• American Indians, Filipinos, Brazilians, and Portuguese are excluded from consideration even if they have Hispanic surnames.
• No hospitals in North Carolina forbid the asking of patients directly about their Hispanic origin.

*NAACCR - North American Association of Central Cancer Registries

• Problems With Establishing Hispanic Origin
• The question of Hispanic origin may not be posed in every case, or the patient may choose not to answer the question.
• Because of the traditionally inaccurate data sent to the Central Registry, the staff generally does not investigate multiple different reports of Hispanic origin for any one patient.
• The place of birth code for Puerto Rico is the same as the FIPS code for Johnston County, NC, so the validity of place of birth in this situation could be questioned.
• For many of the cancer cases reported to the Central Registry, birthplace is recorded as unknown.
• Maiden name is not reported for many of the female patients.
  
• Counties Where the Most Hispanics Resided

Cumberland County	15.30%
Mecklenburg County	9.80%
Wake County	8.75%
Onslow County	8.19%
Guilford County	3.75%
Durham County	2.54%
Craven County	2.20%
Johnston County	2.00%
Orange County	1.85%
Wayne County	1.70%
Buncombe, Harnett Counties	1.66%
New Hanover County	1.39%
Pitt County	1.33%
Duplin County	1.23%
Gaston County	1.13%

Source: US Census Bureau 1998 Population Estimates

• Counties Where the Most Possible Hispanics Resided

Mecklenburg County	14.5%
Wake County	12.5%
Forsyth County	5.4%
Durham County	5.1%
Cumberland, Guilford Counties	4.7%
New Hanover County	2.7%
Orange, Buncombe Counties	2.4%
Craven County	2.0%
Gaston, Carteret, Alamance Counties	1.7%
Union, Stokes, Nash, Moore, Johnston Counties	1.3%

• Counties Where the Most Hispanics Reside Versus Counties Where the Most Possible Hispanics Reside



• Country of Birth for the Possible Hispanics



• Study Results for Women



• Study Results for Men



• Other Results
• 9 of the 297 (or 3.0%) possible Hispanics were coded as Hispanic in the death files. Of those 9 cases, 8 (or 88.9%) were coded as Non-Hispanic in the cancer files.
• 28 of the 297 possible Hispanics (or 9.4%) have a Hispanic surname and/or maiden name and at least one other reason to support their being of Hispanic origin.
• 8 of the 297 possible Hispanics (or 2.7%) were born in Hispanic countries even though their surnames and/or maiden names were not on the list of heavily Hispanic surnames.
• Another 93 of the 297 (or 31.3%) possible Hispanics have Hispanic surnames and/or maiden names and no other reason other than the codes given in the records to suggest they are not Hispanic.
• 50 of the 297 (or 16.8%) possible Hispanics were coded as having unknown Hispanic origin.
• Even if just those 28 possible Hispanics above were actually Hispanic, this would represent a 4.2% increase in the number of Hispanics in our database from 1995-1998.
• Conclusions
• There is sufficient evidence to suggest that at least some of the possible Hispanics are in fact Hispanic.
• Obviously, the question of Hispanic origin is not being posed as it should be in all situations.
• Unless we adequately report cancer cases among Hispanics, we will not be able to truly understand the burden of cancer in this culture and we will not be able to adequately target this group for screening and prevention.