1. Casefinding & Follow-Up Dolores E. McCord, RHIT, CTR Piedmont Hospital Atlanta, Georgia

2. September 30, 20042004 GATRA Educational Conference2 Follow-Up and Casefinding Inter-related Procedures Casefinding leads to follow-up Follow-up leads to casefinding

3. September 30, 20042004 GATRA Educational Conference3 Casefinding – Sources No casefinding, no registry Pathology Department – a MUST Surgical reports –Hospital patient –Physician office –Path only Cytology Bone marrows Autopsy Reports

4. September 30, 20042004 GATRA Educational Conference4 Casefinding – Sources No casefinding, no registry Medical Record Indices – a MUST Outpatient Departments Radiation Therapy Infusion Therapy / Chemotherapy Others?

5. September 30, 20042004 GATRA Educational Conference5 Casefinding Multiple sources – to find Nothing New patient, new diagnosis Existing patient, new diagnosis, follow-up of existing diagnosis Existing patient, existing diagnosis, recurrent or progression, follow-up Existing patient, existing diagnosis, no change, follow-up

6. September 30, 20042004 GATRA Educational Conference6 Casefinding History of, existing cases – trouble- makers Why patient in hospital system with cancer codes? What if the biopsy was negative? What were they trying to find? Ruling out presence of cancer? Trying to confirm presence of cancer, suspected? What about x-rays, scans? What are they looking for? Bigger question: How far do you go?

7. September 30, 20042004 GATRA Educational Conference7 Follow-Up The reason the hospital registry exists. Finds recurrences and new primaries for existing patients Requires resources, time, and diligence. Provides the real value for registry: patient outcome.

8. September 30, 20042004 GATRA Educational Conference8 Follow-Up Is the patient still alive? Simple question – answered, Yes No. The patient is dead – end of story? ICD Cause of Death: to code or not to code. That is the question.

9. September 30, 20042004 GATRA Educational Conference9 Follow-Up Is the cancer present, or was present at last contact/death? Not so simple. Never Disease-Free Cancers: Unknown Primaries, distant metastases at diagnosis. Can the cancer go away? Is the patient clinically without evidence of disease – per physician? Recurrent Cancers: did treatment eradicate all cancer?

10. September 30, 20042004 GATRA Educational Conference10 Follow-Up Cancer status: 1, 2, or 9? Last follow-up, cancer status: 1 Next follow-up, cancer status: 1? Any evidence for recurrence? Questionable status – rising markers, uncertainty

11. September 30, 20042004 GATRA Educational Conference11 Follow-Up Cancer status: 1, 2, or 9? Last follow-up, cancer status: 2 Next follow-up, cancer status: 2? Did treatment eradicate all evidence of cancer? Where did it go?

12. September 30, 20042004 GATRA Educational Conference12 Follow-Up Cancer status 1, 2, or 9? Last follow-up, cancer status: 9 Next follow-up, cancer status: __?

13. September 30, 20042004 GATRA Educational Conference13 Follow-Up COC Requirements Patient status Cancer status Recurrence information

14. September 30, 20042004 GATRA Educational Conference14 Follow-Up Not Required by COC Subsequent treatment Specific metastatic site(s)

15. September 30, 20042004 GATRA Educational Conference15 Follow-Up Subsequent treatment – completes the picture Recurrences – what happened next? Non-analytic cases – was cancer care given? Biopsy? More surgery? Radiation? Chemotherapy? Palliative care? Administrative reports – radiation, 1 st or 2 nd course – a must!

16. September 30, 20042004 GATRA Educational Conference16 Follow-Up Recurrence information – Metastatic Sites Single site, specific code Multiple sites, combination code – lose information Brain mets, at DX and at recurrence – administrative reports

17. September 30, 20042004 GATRA Educational Conference17 Follow-Up Process Steps = Success List due for follow-up Hospital system: inpatients, outpatients, ED MQS SSDI Other?

18. September 30, 20042004 GATRA Educational Conference18 Follow-Up Process Steps = Success Letters Physicians: one vs. all Patients Other physicians? Secondary contacts? Last resorts – the phone

19. September 30, 20042004 GATRA Educational Conference19 Follow-Up Letters Patient Letters Valuable information New doctors New address Date of last contact – post mark date Returned – Pain in the ____! MLNA – address search New address

20. September 30, 20042004 GATRA Educational Conference20 Follow-Up Letters Physician Letters Not always reliable Wrong dates, unknown info Source for other physicians Recurrence and subsequent treatment information Clinical trial inclusion Keep physician contacts updated

21. September 30, 20042004 GATRA Educational Conference21 Follow-Up Letters Other Contact Letters Rarely used Varied response rates Could be useful

22. September 30, 20042004 GATRA Educational Conference22 Follow-Up Sources Letters / Phone calls Admissions / hospital service (CF) Path reports (CF) Clinic / outpatient visits (CF) Internet sources Death certificates Obits

23. September 30, 20042004 GATRA Educational Conference23 Follow-Up Rates Two Measurements Since reference date: 80% Diagnosed last 5 years: 90% No longer 80% of alive analytic patients No longer 90% of all analytic patients

24. September 30, 20042004 GATRA Educational Conference24 Follow-Up Rates Who are not followed? Non-analytic cases CIS, CIN III, other III’s Previously collected localized skins Benign / borderline tumors Foreign residents Reportable by agreement >100 years old, last contact >12 months

25. September 30, 20042004 GATRA Educational Conference25 Follow-Up Rates Who are lost? “…delinquent if no contact has been made with the patient within fifteen months after the date of last contact.” Hutchison, C.L., S.D. Roffers, and A.G. Fritz (eds.), Cancer registry management: principles and practice. Dubuque: Kendall/Hunt Publishing Company, 1997, p. 137.

26. September 30, 20042004 GATRA Educational Conference26 Follow-Up Rates Who are lost? Last Contact: June 2003 12 months:June 2004 13 months:July 2004 14 months:August 2004 15 months:September 2004 Lost 16 months:October 2004

27. September 30, 20042004 GATRA Educational Conference27 Follow-Up Rates Who are lost? Current month:October 2004 12 months back:October 2003 13 months back:September 2003 14 months back:August 2003 15 months back:July 2003 16 months & lost:June 2003 & before

28. September 30, 20042004 GATRA Educational Conference28 Casefinding and Follow- Up Made for each other! One should always lead to the other. Both time-consuming processes Both basis for registry