Perks and Quirks: Using the NCDB Participant User File (PUF) for Outcomes Research

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1 Perks and Quirks: Using the NCDB Participant User File (PUF) for Outcomes Research Daniel J. Boffa, MD Thoracic Surgery Yale University School of Medicine

2 None Disclosures

3 Why Me? No formal affiliation with NCDB

4 Why Me? No formal affiliation with NCDB Outcomes research with NCDB PUF x 4 years

5 Why Me? No formal affiliation with NCDB Outcomes research with NCDB PUF x 4 years MANY Manuscript Rejections Good sense of perceptions Made lots of mistakes

6 NCDB Participant User File (PUF) American College Surgeons American Cancer Society

7 NCDB Participant User File (PUF) De-identified, comprehensive data set Site Specific (colon, breast, prostate) Patient care research Clinician-investigators at CoC accredited cancer centers

8 Who is in NCDB Hospital with CoC Accredited Cancer Center 1,500 (30% of U.S. Hospitals) Report All Newly diagnosed CA (Obligatory)

9 Who is in NCDB Hospital with CoC Accredited Cancer Center 1,500 (30% of U.S. Hospitals) Report All Newly diagnosed CA (Obligatory) Treatment or Diagnostic Evaluation (i.e. not just pathology review)

10 Who is in NCDB Hospital with CoC Accredited Cancer Center 1,500 (30% of U.S. Hospitals) Report All Newly diagnosed CA (Obligatory) Treatment or Diagnostic Evaluation (i.e. not just pathology review) 70% of CA patients in U.S.

11 Who is NOT in NCDB PUF Veterans from VA hospitals

12 Who is NOT in NCDB PUF Veterans from VA hospitals A few Top Rated cancer centers

13 What DATA captured Sociodemographics Cancer Treatment Survival

14 What DATA captured Sociodemographics Cancer Treatment Survival First course of treatment

15 Age Race Sex Sociodemographics Included Insurance Regional Statistics Distance traveled Facility type (i.e. teaching)

16 Age Race Sex Sociodemographics Included Insurance Regional Statistics Distance traveled Facility type (i.e. teaching)

17 Sociodemographics Included Age Race Sex Insurance Regional Statistics Regional Distance traveled Statistics Distance Facility type traveled (i.e. teaching) Not Weight (BMI) Smoking Performance Status Facility characteristics (# beds, specialty services)

18 Included Modified Charlson Comorbidity Index 0, 1, >2 Health

19 Health Included Modified Charlson Comorbidity Index 0, 1, >2 Not Specific conditions (emphysema) Severity (use of inhalers vs. Oxygen) How established (CT scan or spirometry)

20 Example SBRT vs. Lobectomy NCDB PUF Stage I Lung cancer patients Treatment Stereotactic Body Radiation Therapy (SBRT) Surgery (lobectomy, wedge, segment)

21 Example SBRT vs. Lobectomy NCDB PUF Stage I Lung cancer patients Treatment Stereotactic Body Radiation Therapy (SBRT) Surgery (lobectomy, wedge, segment) Propensity Matched Cohorts

Figure 2 Surgery SBRT < 30% 5y Survival MUCH lower than published case series and trials Journal of Thoracic Oncology 2015 10,

25 Figure 2 Surgery SBRT < 30% 5y Survival MUCH lower than published case series and trials Journal of Thoracic Oncology , DOI: ( /JTO ) Copyright 2015 International Association for the Study of Lung Cancer Terms and Conditions

26 Something not right

27 Adjustment Strategies Cox proportional hazards

28 Only can adjust for variability that is captured by data collected

29 Comorbidity Number not severity

30 Emphysema

31 Emphysema

32 Performance Status Kendall Simmons NFL Guard Diabetes

33 Performance Status

34 Only can adjust for variability that is captured by data collected Particularly Poor Health Not able to be identified/stratified

35 Adjustment Strategies Cox proportional hazards Propensity Matching

36 Adjustment Strategies Cox proportional hazards Propensity Matching

37 SBRT practice Not healthy enough for surgery Poor health = competing survival risk

38 No Match!

39 NCDB Perks Reason no surgery field Not part of initial treatment plan

40 NCDB Perks Reason no surgery field Not part of initial treatment plan Surgery not recommended because of poor health

41 NCDB Perks Reason no surgery field Not part of initial treatment plan Surgery not recommended because of poor health Exclude particularly unhealthy patients from nonsurgical cohort

42 NCDB Perks Reason no surgery field Not part of initial treatment plan Surgery not recommended because of poor health Surgery was recommended, but patient refused.

43 NCDB Perks Reason no surgery field Not part of initial treatment plan Surgery not recommended because of poor health Surgery was recommended, but patient refused. Study subset of nonsurgical cohort healthy enough for surgery

44 Yale Study in NCDB SBRT vs Lobectomy

45 Yale Study in NCDB SBRT vs Lobectomy Healthy Patients All comorbidity free Excluded SBRT patients who not healthy enough for surgery ( Reason no surgery field)

46 Yale Study in NCDB SBRT vs Lobectomy Healthy Patients All comorbidity free Excluded SBRT patients who not healthy enough for surgery ( Reason no surgery field) Propensity matched 1200 pairs

47 Matched Healthy Stage I NSCLC Survival SBRT Lobectomy Months Rosen et al, J Thor Cardiovasc Surg (in print)

48 Yale Study in NCDB SBRT vs Lobectomy Healthy Patients All comorbidity free Excluded SBRT patients who not healthy enough for surgery Only SBRT Patients that refused recommended surgery

49 SBRT Refused Recommended Sx Lobectomy Survival SBRT Months Rosen et al, J Thor Cardiovasc Surg (in print)

50 SBRT Refused Recommended Sx Lobectomy Survival SBRT 5y Survival 29% 40% = Health Related Bias Months Rosen et al, J Thor Cardiovasc Surg (in print)

51 Included Histology Clinical stage Pathologic Stage # of nodes Margin status Site specific factors (e.g. CEA for colon) Cancer

52 Included Histology Clinical stage Pathologic Stage # of nodes Margin status Site specific factors (e.g. CEA for colon) Cancer

53 Cancer Included Histology Clinical stage Pathologic Stage # of nodes Margin status Site specific factors (e.g. CEA for colon) Not Staging tests (CT, PET) Tumor board consensus stage Mutations (EGFR lung cancer)

54 Included Surgery Detailed Chemotherapy Multi-agent vs single Radiation Highly detailed Palliative Sequence Pre/post operative Treatment

55 Treatment Surgery Included Detailed Chemotherapy Multiagent v single Radiation Highly detailed Palliative Not Chemotherapy type (platinum) Concurrent versus sequential chemoradiation

56 NCDB Quirk - Treatment Every CoC Hospital reports Every patient

57 NCDB Quirk - Treatment Every CoC Hospital reports Every patient Reporting hospital must include care outside their hospital

58 NCDB Quirk - Treatment Every CoC Hospital reports Every patient Reporting hospital must include care outside their hospital Duplicate reporting NCDB algorithm to identify

59 NCDB Quirk - Treatment Every CoC Hospital reports Every patient Reporting hospital must include care outside their hospital Duplicate reporting NCDB algorithm to identify NCDB takes most complete report (does not compile a composite)

60 Included 30-day surgical mortality 90-day surgical mortality Unplanned readmissions Adverse Events

61 Included 30-day surgical mortality 90-day surgical mortality Unplanned readmissions Adverse Events

62 NCDB Quirk - Readmissions Only readmissions to reporting hospital

63 Readmissions after colorectal surgery

64 Readmissions after colorectal surgery Relatively uniform around facility

65 Readmissions after colorectal surgery Decreased significantly If patients Traveled >160 miles

66 Adverse Events Included 30 day mortality surgery Unplanned readmissions (to reporting hospital) Not Specific surgical complications Adverse events with nonsurgical Tx

67 Included All-Cause Survival Follow up

68 Follow up Included All-Cause Survival Not Recurrence-Free Survival Cause of death Cancer-specific survival Quality of Life

69 Transitions over time

70 Transitions over time Added Charlson Co-morbidity Required reporting of radiation Tx

71 Transitions over time Registrars code Clinical Stage from chart review (dramatically decreased missing cases)

72 Transitions over time Surgical approach (minimally invasive, robot)

73 Transitions over time Shortened embargo on survival data 7y 3y (PUF released in 2015 has survival through 2012 cases)

74 Transitions over time Field to indicate if treatment occurred at reporting facility (previously, annual volume estimates were ambiguous) (retro) 2014

75 Other NCDB Quirks Age (younger more likely captured) 73% of pts <65 captured 63% of pts >65 captured

76 Other NCDB Quirks Age (younger more likely captured) 73% of pts <65 captured 63% of pts >65 captured Racial disparities (Hispanic less likely) 50% of cases in pts of hispanic origin captured 65% of cases (white, black)

77 Other NCDB Quirks Age (younger more likely captured) 73% of pts <65 captured 63% of pts >65 captured Racial disparities 50% of cases in pts of hispanic origin captured 65% of cases (white, black) Regional variation 89% of Delaware 27% of Arizona

78 NCDB Quirk Clinical Impressions Clinical Stage Reason no surgery field Surgery recommended Surgery not recommend

79 NCDB Quirks Clinical Impressions

80 NCDB Quirks Clinical Impressions

81 Other NCDB Perks >90% follow up User Friendly Accessible NCDB consultants Free/already paying for it

82 Conclusions NCDB PUF has enormous potential Transparent about limitations Changes over time critical to recognize report version of PUF

83 9 Data dictionary

Financial Disclosure. Learning Objectives. Review and Impact of the NCDB PUF. Moderator: Sandra Wong, MD, MS, FACS, FASCO

Financial Disclosure. Learning Objectives. Review and Impact of the NCDB PUF. Moderator: Sandra Wong, MD, MS, FACS, FASCO Review and Impact of the NCDB PUF Moderator: Sandra Wong, MD, MS, FACS, FASCO Financial Disclosure I do not have personal financial relationships with any commercial interests Learning Objectives At the