Reclassification of Ethnicity in the Massachusetts Cancer Registry (MCR), Richard Knowlton, MS Susan Gershman, MPH, PhD, CTR Massachusetts Cancer Registry

Audit Background MCR recently published a report on cancer by race and ethnicity in Massachusetts, which provided important information on which race/ethnicity groups had the highest rates of invasive cancers. This report presented data for the first time on specific Hispanic ethnicities. We were able to rank cancers for Dominicans, Puerto Ricans, and Central and South Americans. Additionally, we ranked cancers among Haitians and people from Portuguese speaking countries (Brazil, Portugal, Cape Verde, and the Azores).

Due to the large numbers of Hispanics without a specified ethnicity (code=6), we were unable to calculate rates for these Hispanic ethnicities. We wanted to be able to obtain more complete Hispanic ethnic data to further study potential disparities. Due to the large Portuguese-speaking population in MA, we wanted to clear up misclassifications of Portuguese as Hispanics. We were able to present rates on Haitians in the report, but we wanted to strengthen these data further. Audit Background

METHODS

Targeted Ethnicities Hispanics who were missing specific ethnicity data Puerto Rican Dominican Cuban Mexican Central/South American Black, non-Hispanics with French- or African-sounding names with birth country missing. Haitians Africans Other Caribbean Ethnicities For cases diagnosed from , the MCR generated the following lists, sorted by facility of diagnosis:

Audits Letters were mailed to each registrar who worked at a hospital on the list, asking him/her to look for a specific ethnicity and/or birth country in the medical report. If a hospital had more than 50 cases to audit, the registry offered to go to the hospital to review charts. All but two of the facilities opted to review their own charts. MCR staff reviewed over 200 charts at two major MA hospitals.

Responses An ACCESS database was created to keep track of the responses from hospital registrars. This database included fields on: New Race New Hispanic Ethnicity New Country of Birth Queries were created within the database to keep track of ‘open’ cases and also to generate statistics on reclassified cases.

AUDIT RESULTS

Reclassification of Cases Coded as Hispanic, NOS n=1,232 Not Hispanic - 22%

Breakdown of Cases Recoded as Non-Hispanic *- includes cases from Cape Verde, Brazil, Portugal, and the Azores.n=269

Reclassification of Black, non-Hispanic Cases with French or African Names and Missing Birth Country * - includes Nigeria, Ghana, Liberia, and the Ivory Coast. ** - includes Tanzania, Uganda, Kenya, Somalia, and Ethiopia. n=197

Limitations Nearly 100% of the facilities completed the audits. Hispanics: For the facilities with at least 10 cases, the re-classification rate ranged from 13%-89%. Blacks: For the facilities with at least 10 cases, the re-classification rate ranged from 8%-100%.

Reasons for No Reclassification Specific ethnicity and birth country data were not available in the chart. Time constraints for registrars to pursue doctors for that information. When MCR staff audited charts for race information, the information was sometimes located in obscure locations, such as the social worker or interpreter notes. Given the time demands on registrars, such additional review may not be possible.

Room for Improvement In 2007, Massachusetts implemented mandatory reporting of 31 race and ethnicity categories in hospitals. These categories include several Hispanic ethnicities (Dominican, Colombian, Cuban, Guatemalan, Honduran, Mexican, Puerto Rican, and Salvadoran), Haitians, Brazilians, and Cape Verdeans. Data will also be collected on primary language spoken.

Next Steps The MCR plans to do another audit to try and obtain the remaining missing data from this audit. We are doing an audit for a primary payer study which will require pulling charts from nearly every facility in the state. We hope to ‘piggyback’ the unresolved race/ethnicity cases onto this audit. Once 2007 data are more complete, we will look to see if the race/ethnicity regulations resulted in more complete data. In the fall of 2008, as part of the semi-annual hospital registrar training, we did a presentation called ‘A Voyage Through Hispanic and Portuguese Coding’ to provide registrars with a little more information on the countries that were part of the audit.

A Voyage Through Hispanic and Portuguese Coding Richard Knowlton, MS Massachusetts Cancer Registry CTR Education Program October 3, 2008

Portugal and the Azores Following its heyday as a global maritime power during the 15th and 16th centuries, Portugal lost much of its wealth and status with the destruction of Lisbon in a 1755 earthquake, occupation during the Napoleonic Wars, and the independence of its wealthiest colony of Brazil in A 1910 revolution deposed the monarchy; for most of the next six decades, repressive governments ran the country. In 1974, a left-wing military coup installed broad democratic reforms. The following year, Portugal granted independence to all of its African colonies. Portugal is a founding member of NATO and entered the EC (now the EU) in The Azores are an autonomous archipelago of islands in the Atlantic Ocean located 950 miles west of Lisbon, the capital of Portugal.

Conclusions The lack of complete ethnicity data is an impediment to determining patterns of cancer among such groups in MA as Puerto Ricans, Dominicans, Central/South Americans, Portuguese, Cape Verdeans, Brazilians, and Haitians. While NAACCR coding allows for diverse Asian groups, the same is not true of these groups. The lack of complete ethnicity data is an impediment to determining patterns of cancer among such groups in MA as Puerto Ricans, Dominicans, Central/South Americans, Portuguese, Cape Verdeans, Brazilians, and Haitians. While NAACCR coding allows for diverse Asian groups, the same is not true of these groups. In Massachusetts, a project involving active contact of hospital registrars resulted in the percentages of Hispanics, NOS, dropping from 21% to 9% of all Hispanics reported. In Massachusetts, a project involving active contact of hospital registrars resulted in the percentages of Hispanics, NOS, dropping from 21% to 9% of all Hispanics reported. 22% of Hispanics, NOS were determined to not be Hispanic. Of these, over half were determined to be of a Portuguese ethnicity. 22% of Hispanics, NOS were determined to not be Hispanic. Of these, over half were determined to be of a Portuguese ethnicity. Nearly all of the blacks reported to the MCR with a French name and a missing country were determined to be Haitian. Nearly all of the blacks reported to the MCR with a French name and a missing country were determined to be Haitian.

THANKS! GRACIAS! OBRIGADO! MERCIE! To all of the hospital registrars and MCR staff who participated in these audits. AND We acknowledge the Centers for Disease Control and Prevention for its support of the staff and printing of this poster under cooperative agreement 1 U58 DP awarded to the Massachusetts Department of Public Health. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.