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Adding Comorbidity Data to the
           Hawai‘i SEER Registry for Kaiser
           Permanente Hawai‘i Members

           HMO Research Network Annual Meeting
           April 30, 2012
                  Mark C. Hornbrook, PhD and Joan Holup, MA
                           The Center for Health Research, Kaiser Permanente
                  Marsha E. Reichman, PhD, MPH
                           The Food and Drug Administration
                  Marc T. Goodman, PhD, MPH
                           Cancer Research Center of Hawai„i, University of Hawai„i
                  Robin Yabroff, PhD
                           DCCPS, National Cancer Institute


© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Research Site




© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Project Team
            CHR Hawai„i
                  Aileen Uchida, MPH
                  Mark M. Schmidt
            SEER Hawai„i (Hawai„i Tumor Registry,
             Cancer Research Center of Hawai„i)
                  Michael Green, CTR
                  Alan Y. Mogi, CDP
            IMS Inc.
                  Jennifer Stevens

© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Funding and IRB
            National Cancer Institute
            IRB approvals
                  KP Hawai„i
                  KP Northwest delegated to KPH
                  University of Hawai„i




© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Why?
            A cancer registry focuses exclusively on
             malignancies, which can generate an
             incomplete picture of the patient‟s health
             state
            New developments in health informatics
             make it feasible and affordable to extract and
             transfer comorbidity data to a disease registry
                  Cancer can be examined within the context of
                   other significant health problems

© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Comorbidities
            Comorbidities may influence medical
             decisionmaking
                  “Numerous biologic ties between cancer and
                   comorbidity exist, one example being an
                   association of diabetes with an increased risk of
                   disease recurrence and mortality in the setting of
                   colon cancer.” Pal SK, Hurria A. Impact of age, sex, and comorbidity on cancer
                                                       therapy and disease progression. J Clin Oncol. 2010 Sep
                                                       10;28(26):4086-93. Epub 2010 Jul 19.


            Need to understand the role of comorbidities
             on cancer treatment and outcomes to
             personalize care and derive optimal benefit
© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Aims—SEER
            Develop and test pathway for up-loading
             comorbidity data on KPH cancer patients to
             the Hawai„i SEER Registry
            To illustrate the utility of comorbidity data to a
             cancer or other disease registry




© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Challenges
            IRB issues
            Data linkage issues




© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Human Subjects Protection Issues
            Univ. of Hawai„i Committee on Human Studies, IRB
             for Hawai„i SEER (Hawaii Tumor Registry)
                  Approved receipt of PHI and comorbidity data from KPH
                  Did not approve sending PHI for KPH cancer cases not
                   recorded by KPH for their members
            KPH IRB
                  Since KPH is already sending PHI to HTR, approval provided
                   to resubmit PHI (for linking purposes) with additional
                   diagnosis and medication comorbidity variables
                  Did not approve releasing PHI for patients NOT reported to
                   the Hawai„i Tumor Registry


© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Phase I: PHI File—KPH to HTR
            Match and reconcile KPH records to HTR
             records for cancer diagnosed between
             January 1, 2000 and December 31, 2008
            Tabulate KPH comorbidities by tumor to
             match with HTR tumor records




© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
KPH Tumor Records Sent to HTR, 2000-2008

     1400

     1200                                                             1,276
                                                              1,201                   1,224 1,179
                              1,134 1,132 1,090                               1,173
     1000
                  980
      800

      600

      400

      200

          0
                  2000        2001         2002        2003   2004    2005    2006    2007   2008

© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Number of Matches: KPH to HTR
     Matching Keys: Site, Histology, Behavior, Laterality, Date of Diagnosis


     8000
     7000
                                          73%
     6000
     5000
     4000
                                         6935
     3000                                                 17%
     2000
     1000                                                 2611

           0
                                       Perfect            Fuzzy


© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
KPH Tumor Records Matched to HTR Using Dx
   Date, Name, Birth Date, and Other PHI, 2000-2008

  100%              94% 94% 94% 92%
                                    89% 91% 92% 89% 92% 92%
   90%
   80%
   70%
   60%
   50%
   40%
   30%
   20%
   10%
    0%
           2000        2001        2002        2003    2004   2005   2006   2007   2008   All Years
© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Matching Tumor Records
  100%           50           41           59           72      84     150     134     155
                 62           63           67                                                     172
   90%                                                  86     128
                                                                       112     93      135        97
   80%          142          205          219
                                                        265    287
   70%                                                                 381     388                313
                                                                                       411
   60%
   50%
   40%          776          866          846
   30%                                                  739    786
                                                                       783     692                769
                                                                                       678
   20%
   10%
     0%
               1
             2000            2
                           2001          3
                                       2002              4
                                                       2003     5
                                                              2004     6
                                                                     2005       7
                                                                              2006     8
                                                                                      2007     9
                                                                                              2008
          Unmatched, on HTR file, not KPH                       Unmatched, on KPH file, not HTR
          Fuzzy Match (KPH to HTR)                              Perfect Match (KPH to HTR)
© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Comorbidity Measurement

                                                       Cancer Diagnosed


            Comorbidity Assessment Period                            Treatment
                                                                 
                              12 months                1 month



           One-month gap between comorbidity assessment period and date of
           cancer diagnosis reduces influence of cancer-related “rule-out”
           diagnoses on comorbidity measure.                               1




© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Charlson-Deyo Comorbidity Classes
       Myocardial infarction                           Rheumatoid arthritis
       Congestive heart disease                        Peptic ulcer disease
       Peripheral vascular                             Mild liver disease
        disease                                         Diabetes
       Cerebrovascular disease                           Diabetes complications
       Dementia                                          Paralysis
       Chronic obstructive                               Renal disease
        pulmonary disease
                                                          Severe liver disease
       Rheumatoid arthritis

© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Presence of Comorbid Diagnoses by
Cancer Site
                                                       Total # of % of Tumors with
                     Cancer Site                        Tumors      Comorbidity
  All Sites                                              9,546          37%
  Respiratory & Intra-thoracic                          1,133          54%
  Colon & Rectum                                        1,110          40%
  Prostate                                              1,080          37%
  Breast                                                1,832          25%



© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Frequency of Comorbid Diagnoses
  Total Number of Tumors                                9,546    100%

  Number of Tumors with C-D Comorbidities               3,503    37%

  Total C-D Comorbidities                               6,018    100%

                   Serious Chronic Conditions          Number   Percent

  Diabetes Mellitus                                    1,578     26%
  Chronic Obstructive Pulmonary Disease                1,487     25%
  Complications of Diabetes Mellitus                    585      10%
  Renal Disease                                         486      8%
  Cerebrovascular Disease                               458      8%       36%
  Congestive Heart Disease                              413      7%
  Myocardial Infarction                                 269      4%
  Peripheral Vascular Disease                           280      5%
© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Cancers of Digestive Organs
                                                              # of Tumors
                                                    # of          with          # of         Comorbidities
         Digestive Organs                         Tumors     Comorbidities   Comorbidities    per Tumor
All Digestive System sites                         1,110         448             804              1.8
Pelvic/Sigmoid/Sigmoid Flexure
(C187)                                                 260        90             152              1.7
Rectum (C209)                                          259        85             154              1.8
Ascending/Right (C182)                                 140        77             153              2.0
Cecum (C180)                                           121        47              81              1.7
Rectosigmoid/Colon and
Rectum (C199)                                          109        38              55              1.4
Descending/Left (C186)                                 63         40              81              2.0
Transverse (C184)                                      62         28              55              2.0
Hepatic Flexure (C183)                                 39         21              34              1.6
Splenic Flexure (C185)                                 37         16              32              2.0
Appendix (C181)                                        10         2               2               1.0
Colon, NOS (C189)                                       7         3               4               1.3


© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
Comorbidities of Digestive System Cancers
         Total Number of Digestive Organ Tumors                    1,843
         Number of Digestive Organ Tumors with C-D Comorbidities    807
                                        C-D Comorbidities          Number
         Diabetes Mellitus                                          417
         Chronic Obstructive Pulmonary Disease                      274
         Complications of Diabetes Mellitus                         152
         Renal Disease                                              105
         Cerebrovascular Disease                                    104
         Congestive Heart Disease                                   101
         Myocardial Infarction                                      72
         Peripheral Vascular Disease                                67
         Peptic Ulcer Disease                                       52
         Mild Liver Disease                                         50
         Dementia                                                   25
         Severe Liver Disease                                       17
         Rheumatoid Arthritis                                       14
         Paralysis                                                   7
         Total C-D Comorbidities
© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH               1,450
Implications
            SEER registries should have comorbidity data
                  Reporting laws may need amending
                  Matching algorithms should include two-way
                   sharing of linkage files to identify and resolve
                   linkage errors
                  Matching by patient attributes only is not sufficient
                  Matching must include tumor attributes
                       Site, histology, behavior, laterality, date of diagnosis
                        (year/month)




© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
© 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH

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Expanding SEER Reporting with Comorbidity Data Colorectal Cancer HORNBROOK

  • 1. Adding Comorbidity Data to the Hawai‘i SEER Registry for Kaiser Permanente Hawai‘i Members HMO Research Network Annual Meeting April 30, 2012 Mark C. Hornbrook, PhD and Joan Holup, MA The Center for Health Research, Kaiser Permanente Marsha E. Reichman, PhD, MPH The Food and Drug Administration Marc T. Goodman, PhD, MPH Cancer Research Center of Hawai„i, University of Hawai„i Robin Yabroff, PhD DCCPS, National Cancer Institute © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 2. Research Site © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 3. Project Team  CHR Hawai„i  Aileen Uchida, MPH  Mark M. Schmidt  SEER Hawai„i (Hawai„i Tumor Registry, Cancer Research Center of Hawai„i)  Michael Green, CTR  Alan Y. Mogi, CDP  IMS Inc.  Jennifer Stevens © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 4. Funding and IRB  National Cancer Institute  IRB approvals  KP Hawai„i  KP Northwest delegated to KPH  University of Hawai„i © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 5. Why?  A cancer registry focuses exclusively on malignancies, which can generate an incomplete picture of the patient‟s health state  New developments in health informatics make it feasible and affordable to extract and transfer comorbidity data to a disease registry  Cancer can be examined within the context of other significant health problems © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 6. Comorbidities  Comorbidities may influence medical decisionmaking  “Numerous biologic ties between cancer and comorbidity exist, one example being an association of diabetes with an increased risk of disease recurrence and mortality in the setting of colon cancer.” Pal SK, Hurria A. Impact of age, sex, and comorbidity on cancer therapy and disease progression. J Clin Oncol. 2010 Sep 10;28(26):4086-93. Epub 2010 Jul 19.  Need to understand the role of comorbidities on cancer treatment and outcomes to personalize care and derive optimal benefit © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 7. Aims—SEER  Develop and test pathway for up-loading comorbidity data on KPH cancer patients to the Hawai„i SEER Registry  To illustrate the utility of comorbidity data to a cancer or other disease registry © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 8. Challenges  IRB issues  Data linkage issues © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 9. Human Subjects Protection Issues  Univ. of Hawai„i Committee on Human Studies, IRB for Hawai„i SEER (Hawaii Tumor Registry)  Approved receipt of PHI and comorbidity data from KPH  Did not approve sending PHI for KPH cancer cases not recorded by KPH for their members  KPH IRB  Since KPH is already sending PHI to HTR, approval provided to resubmit PHI (for linking purposes) with additional diagnosis and medication comorbidity variables  Did not approve releasing PHI for patients NOT reported to the Hawai„i Tumor Registry © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 10. Phase I: PHI File—KPH to HTR  Match and reconcile KPH records to HTR records for cancer diagnosed between January 1, 2000 and December 31, 2008  Tabulate KPH comorbidities by tumor to match with HTR tumor records © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 11. KPH Tumor Records Sent to HTR, 2000-2008 1400 1200 1,276 1,201 1,224 1,179 1,134 1,132 1,090 1,173 1000 980 800 600 400 200 0 2000 2001 2002 2003 2004 2005 2006 2007 2008 © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 12. Number of Matches: KPH to HTR Matching Keys: Site, Histology, Behavior, Laterality, Date of Diagnosis 8000 7000 73% 6000 5000 4000 6935 3000 17% 2000 1000 2611 0 Perfect Fuzzy © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 13. KPH Tumor Records Matched to HTR Using Dx Date, Name, Birth Date, and Other PHI, 2000-2008 100% 94% 94% 94% 92% 89% 91% 92% 89% 92% 92% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 2000 2001 2002 2003 2004 2005 2006 2007 2008 All Years © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 14. Matching Tumor Records 100% 50 41 59 72 84 150 134 155 62 63 67 172 90% 86 128 112 93 135 97 80% 142 205 219 265 287 70% 381 388 313 411 60% 50% 40% 776 866 846 30% 739 786 783 692 769 678 20% 10% 0% 1 2000 2 2001 3 2002 4 2003 5 2004 6 2005 7 2006 8 2007 9 2008 Unmatched, on HTR file, not KPH Unmatched, on KPH file, not HTR Fuzzy Match (KPH to HTR) Perfect Match (KPH to HTR) © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 15. Comorbidity Measurement Cancer Diagnosed Comorbidity Assessment Period Treatment  12 months 1 month One-month gap between comorbidity assessment period and date of cancer diagnosis reduces influence of cancer-related “rule-out” diagnoses on comorbidity measure. 1 © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 16. Charlson-Deyo Comorbidity Classes  Myocardial infarction  Rheumatoid arthritis  Congestive heart disease  Peptic ulcer disease  Peripheral vascular  Mild liver disease disease  Diabetes  Cerebrovascular disease  Diabetes complications  Dementia  Paralysis  Chronic obstructive  Renal disease pulmonary disease  Severe liver disease  Rheumatoid arthritis © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 17. Presence of Comorbid Diagnoses by Cancer Site Total # of % of Tumors with Cancer Site Tumors Comorbidity All Sites 9,546 37% Respiratory & Intra-thoracic 1,133 54% Colon & Rectum 1,110 40% Prostate 1,080 37% Breast 1,832 25% © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 18. Frequency of Comorbid Diagnoses Total Number of Tumors 9,546 100% Number of Tumors with C-D Comorbidities 3,503 37% Total C-D Comorbidities 6,018 100% Serious Chronic Conditions Number Percent Diabetes Mellitus 1,578 26% Chronic Obstructive Pulmonary Disease 1,487 25% Complications of Diabetes Mellitus 585 10% Renal Disease 486 8% Cerebrovascular Disease 458 8% 36% Congestive Heart Disease 413 7% Myocardial Infarction 269 4% Peripheral Vascular Disease 280 5% © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 19. Cancers of Digestive Organs # of Tumors # of with # of Comorbidities Digestive Organs Tumors Comorbidities Comorbidities per Tumor All Digestive System sites 1,110 448 804 1.8 Pelvic/Sigmoid/Sigmoid Flexure (C187) 260 90 152 1.7 Rectum (C209) 259 85 154 1.8 Ascending/Right (C182) 140 77 153 2.0 Cecum (C180) 121 47 81 1.7 Rectosigmoid/Colon and Rectum (C199) 109 38 55 1.4 Descending/Left (C186) 63 40 81 2.0 Transverse (C184) 62 28 55 2.0 Hepatic Flexure (C183) 39 21 34 1.6 Splenic Flexure (C185) 37 16 32 2.0 Appendix (C181) 10 2 2 1.0 Colon, NOS (C189) 7 3 4 1.3 © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 20. Comorbidities of Digestive System Cancers Total Number of Digestive Organ Tumors 1,843 Number of Digestive Organ Tumors with C-D Comorbidities 807 C-D Comorbidities Number Diabetes Mellitus 417 Chronic Obstructive Pulmonary Disease 274 Complications of Diabetes Mellitus 152 Renal Disease 105 Cerebrovascular Disease 104 Congestive Heart Disease 101 Myocardial Infarction 72 Peripheral Vascular Disease 67 Peptic Ulcer Disease 52 Mild Liver Disease 50 Dementia 25 Severe Liver Disease 17 Rheumatoid Arthritis 14 Paralysis 7 Total C-D Comorbidities © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH 1,450
  • 21. Implications  SEER registries should have comorbidity data  Reporting laws may need amending  Matching algorithms should include two-way sharing of linkage files to identify and resolve linkage errors  Matching by patient attributes only is not sufficient  Matching must include tumor attributes  Site, histology, behavior, laterality, date of diagnosis (year/month) © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH
  • 22. © 2012, KAISER PERMANENTE CENTER FOR HEALTH RESEARCH

Hinweis der Redaktion

  1. Total number tumor records sent to HTR = 10,389, representing 9,591 unique KPH HRNs.
  2. We had 73% exact matches, and 17% based on 24 combinations of fewer matching variables where the omitted key variables did not agree. Even with both parties holding patient identifiers (name, address, DOB, gender, etc., matching KPH records to HTR records is a significant challenge.
  3. This slide shows that we still have unmatched cases at each end of the data transfer even with fuzzy matching.Both the unmatched cases and fuzzy data linkages are sources of measurement error.