1. NAACCR Annual Meeting Detroit, 2007 Assessing Completeness of Melanoma Reporting in Louisiana Wu XC, Ferdaus R, Andrews PA, Chen VW Louisiana Tumor Registry Assessing Completeness of Melanoma Reporting in Louisiana Wu XC, Ferdaus R, Andrews PA, Chen VW Louisiana Tumor Registry

2. Background information Underreporting melanoma cases is an unresolved issue to all population-based cancer registries. Underreporting melanoma cases is an unresolved issue to all population-based cancer registries. Due to inadequate resources, cancer registries have not been able to conduct case finding from dermatology offices. Due to inadequate resources, cancer registries have not been able to conduct case finding from dermatology offices.

3. Background information To capture melanoma cases from non- hospital reporting sources, many registries have worked with their freestanding and hospital reference pathology labs to either have them routinely submit their path reports for reportable cancer cases or send abstractors there to screen their path reports. To capture melanoma cases from non- hospital reporting sources, many registries have worked with their freestanding and hospital reference pathology labs to either have them routinely submit their path reports for reportable cancer cases or send abstractors there to screen their path reports.

4. Background information By doing that, cancer registries capture most of melanoma cases but may miss the cases from dermatology offices that By doing that, cancer registries capture most of melanoma cases but may miss the cases from dermatology offices that - have an in-house pathology assessment. - use freestanding and reference pathology labs that are unknown to cancer registries.

5. Background informaiton The study conducted by Los Angeles Cancer Surveillance Program found that over a third of pathology labs used by physicians for melanoma biopsy specimens were unknown to the registry and ~ 35% of melanoma cases were unreported. The study conducted by Los Angeles Cancer Surveillance Program found that over a third of pathology labs used by physicians for melanoma biopsy specimens were unknown to the registry and ~ 35% of melanoma cases were unreported.

6. Background information LTR had been screening all known freestanding and hospital reference pathology labs including out-of-state pathology labs. LTR had been screening all known freestanding and hospital reference pathology labs including out-of-state pathology labs. LTR, however, did not routinely conduct case finding at all dermatology offices. LTR, however, did not routinely conduct case finding at all dermatology offices. We did not know extent of underreporting in Louisiana for melanoma cases. We did not know extent of underreporting in Louisiana for melanoma cases.

7. Background information In response to the SEER RRSS, we submitted the application “Replication for results regarding completeness of melanoma surveillance.” In response to the SEER RRSS, we submitted the application “Replication for results regarding completeness of melanoma surveillance.” The study was conducted between September 29, 2005, and September 30, 2006, focusing on 2004 cases. The study was conducted between September 29, 2005, and September 30, 2006, focusing on 2004 cases.

8. Objectives Identify dermatologists who have in-house pathology assessments and do not routinely report their cancer cases to LTR. Identify dermatologists who have in-house pathology assessments and do not routinely report their cancer cases to LTR. Identify pathology labs that are unknown to LTR. Identify pathology labs that are unknown to LTR. Determine the number and percent of missed 2004 melanoma cases. Determine the number and percent of missed 2004 melanoma cases. Uncover reasons for underreporting and implement activities to increase completeness of melanoma reporting in Louisiana. Uncover reasons for underreporting and implement activities to increase completeness of melanoma reporting in Louisiana.

9. Survey questionnaire We adopted the survey questionnaire developed by Los Angeles Cancer Surveillance Program for a similar study and made some modifications. We adopted the survey questionnaire developed by Los Angeles Cancer Surveillance Program for a similar study and made some modifications.

10. Sources of information on dermatologists - American Medical Association website - American Academy of Dermatology website - Louisiana state Board of Medical Examiners - Yellow Pages - Yellow Pages - Insurance company websites - American Society of Dermatological Surgery - American College of Mohs Micrographic Surgery

11. Data collection from dermatology offices We compiled a list of 157 dermatologists. We compiled a list of 157 dermatologists. Before mailing out survey forms, we called all dermatologists on the list to verify or obtain information on their current practice status and mailing addresses. Before mailing out survey forms, we called all dermatologists on the list to verify or obtain information on their current practice status and mailing addresses.

12. Data collection from dermatology offices A letter with the survey questionnaire was sent to each dermatologist. A letter with the survey questionnaire was sent to each dermatologist. Thirty-five (35) dermatologists responded and mailed completed survey questionnaire back to us without further prompting. Thirty-five (35) dermatologists responded and mailed completed survey questionnaire back to us without further prompting. Twenty (20) dermatologists completed and mailed back the survey questionnaires after a following up phone call. Twenty (20) dermatologists completed and mailed back the survey questionnaires after a following up phone call.

13. Data collection from dermatology offices The remaining 102 dermatologists were the targets for our telephone survey. The remaining 102 dermatologists were the targets for our telephone survey. Through many phone calls, we were able to complete telephone survey for additional 89 dermatologists. Through many phone calls, we were able to complete telephone survey for additional 89 dermatologists.

14. Data collection from dermatology offices We failed to obtain information from 13 dermatologists who practiced in Louisiana in 2004 due to the following reasons: We failed to obtain information from 13 dermatologists who practiced in Louisiana in 2004 due to the following reasons: - 7 moved out of Louisiana - 4 retired - 1 died - 1 office closed after Hurricane Katrina without further information

15. Newly identified pathology laboratories We identified 6 freestanding pathology labs that were unknown to LTR. All of them are out-of-state path labs. We identified 6 freestanding pathology labs that were unknown to LTR. All of them are out-of-state path labs. - 2 path labs: had no 2004 melanoma cases from Louisiana residents. - 2 path labs: sent us 83 path reports for melanoma cases, 38 cases in LTR database and 45 cases not abstracted before. - 2 path labs: agreed to send us path reports from 2006 and on.

16. Newly identified pathology laboratories Since we were not able to retrieve path reports from 2 of the path labs, we requested the dermatology office that used the 2 path labs but never report their cancer cases to us to send us their list of 2004 melanoma cases. From the dermatology office, we obtained a list of 13 melanoma cases and 9 of them were not found in LTR database.

17. Dermatology offices with in-house pathology We identified only two dermatology offices with in-house pathology assessments. They routinely report their cancer cases to LTR.

18. Select dermatology office for screening We may miss melanoma cases from dermatology offices that use path labs we routinely obtained path reports. Dermatology offices may not be able to provide information on all path labs they used, especially for the path labs they were required to use by insurance companies occasionally. It was most likely we missed melanoma cases from these obscure path labs.

19. Select dermatologists’ office for screening We selected 26 dermatology offices with > 5 melanoma cases of 2004 for case finding. We were able to obtain list of melanoma cases from only 17 dermatology offices. We identified 104 melanoma cases of 2004 ( in situ and invasive). 51 cases had been missed.

20. Results Response rate to the survey: 92%. According to the estimates given by dermatologists, ~880 melanoma ( in situ & invasive) cases were seen annually at their offices. LTR annual case count is 690. Missed cases is about 22%. This estimate may be little high due to duplicate reporting and including cases diagnosed in previous year.

21. Results Based on path reports from newly identified path labs and lists of melanoma cases from selected dermatology offices, our estimate for missed melanoma cases is 12%. Annual case count* Missed case count % of missed cases In situ 2304717 Invasive460469 Total6909312 * The estimate was based on 2001-2003 melanoma cases.

22. Results Since we were not able to screen all dermatology offices for case finding, the estimate may be lower than the actual percent of the missed cases. The true missed melanoma cases may be between 12% -22%.

23. Conclusions Melanoma cases are underreported in Louisiana. The missed melanoma cases may be between 12%-22%. We missed melanoma cases not only from path labs unknown to us but also from dermatology offices that used path labs we obtained path reports routinely. Dermatology offices may occasionally use obscure path labs required by insurance company.

24. Recommendation for interventions Maintain an update-to-date list of dermatologists Contact all dermatology offices at least twice a year to obtain information on path labs they used. Designate a person to coordinate case reporting from path labs. Some of the path labs, especially out-of-state need to be reminded periodically.

25. Recommendation for intervention The procedures that path labs used to submit their reportable cases need to be assessed. Strategies for casefinding at path labs and dermatology offices need to be evaluated based on cost-effectiveness.