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Enhancing Incidence Data with Passive End-Results

This article features the current data enhancements in the Florida Cancer Data System, including the pilot project and its results. It discusses the importance of augmenting incident data, calculating co-morbid conditions, and updating dates of last contact. The study also explores the impact on patient outcomes and ability to address co-morbidities through data enhancement.

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Enhancing Incidence Data with Passive End-Results

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  1. Enhancing Incidence Data withPassive End-Results Jill MacKinnon, Sarah Manson, and Mayra Alvarez Florida Cancer Data System

  2. Overview • Current data enhancements • Pilot project • Results of pilot project • Data enhancements • Dates of last contact • Co-morbidities

  3. Florida Cancer Data System • Incidence registry (1981) • NPCR required data + 3 state specific fields • Current enhancement • FL Vital Statistics Mortality • Passive end results and retrospective QC case finding • FL discharge records (cancer dx only) • Retrospective QC case finding

  4. Hospital Discharge Data • nteragency agreement allowed for: • Retrospective casefinding • Augmenting incident data • Demographic

  5. Hospital Discharge Data - Pilot • Interagency agreement amended to allow: • Augmenting treatment data (longitudinally) • Calculating co-morbid conditions • Updating date of last contact

  6. Data Enhancement Pilot Project “Team Science” Tobacco related cancers Funding was provided by a Team Science Award from James and Esther King Biomedical Research Program to the University of Miami Miller School of Medicine

  7. Discharge Data (AHCA) Agency for Health Care Administration • Current • Cancer diagnosis only • Pilot project • All cause

  8. Tobacco Related Cancers lung, oral, esophageal, pancreas, larynx, cervical, kidney, bladder, acute myeloid leukemia, stomach and breast cancer

  9. Pilot Project • Address two main questions • Impact on patient date of last contact • Ability to address co-morbidities

  10. Pilot Results

  11. Discharge Database Linkage • Probabilistic • No patient names • Hospital facility • Inpatient and outpatient • Ambulatory surgical facilities • Radiation therapy facilities Ambi

  12. FCDS (Dx 97-04) • Total FCDS tobacco related = 389,965 • Alive = 211,196 • Expired = 178,769

  13. First Question • Enhance date of last contact? • To what extent?

  14. Source of Date of Last ContractLiving Patients Only • No Match 4.8 • All Cause Hosp 13.1 • All Cause Ambi 13.9 • Ca only Hosp 25.2 • Ca only Ambi 43.0

  15. Dx 1997 Cases “Latest” Date of Last Contact (All cause 1997-2004 discharges) Years Passive F/U

  16. Percent Distribution by Age Group

  17. Stage Distribution x DLC Source AHCA Data (1997-2004 discharges)

  18. Second Question • Co-morbid conditions • Calculate • Implications

  19. Co-morbid Conditions • Combine all discharge records (n~1.3 million) • Assign co-morbid conditions based on primary and/or secondary diagnosis • Each patient can have one or more co-morbid conditions

  20. Comorbidity Indices • Elixhauser (30 conditions) • Charlson (19 conditions) • Outcome variable • Series of 0/1 or T/F for each condition

  21. Top Co-morbid Conditions (Excluding Primary Cancer)

  22. Co-morbid ConditionsAll Patients (living and dead) • Overall 28% of records were not matched • Site specific no match ranged 0.1% - 32.9% • Head and Neck smallest % missing • Bladder largest % missing • Kidney 16.0% • Female breast 11.9% • Lung 6.8% • Liver 6.0%

  23. At the end of the day

  24. We are not an end-results registry but We can make our passive Registries more active

  25. Thank you

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