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Ascertaining cases of invasive breastcancer in the 45 and Up Study:a validation study.Kemp A, Preen DB, Saunders C, Holman...
Background• Routinely-collected and self-reported health data are  increasingly used to identify health status and service...
Background continued• Larger program of work examining use of prescription  hormone therapies for invasive breast cancer i...
Objective• To determine the accuracy of hospital and outpatient  services, prescription claims, and self-report for breast...
Data sources• NSW Cancer Registry (gold standard)   o date of diagnosis for all invasive breast cancers in NSW     between...
Breast cancer ‘flags’• Hospital diagnosis of invasive breast cancer   o ≤ 6 months of diagnosis• Breast cancer surgery   o...
Analyses• Cases of invasive breast cancer recorded on the Cancer  Registry during the study period were compared with flag...
Results• Of 143,010 women in the 45 and Up Study, 2661 (1.9%) had  a recorded invasive breast cancer on the Cancer Registr...
Results from individual datasets                                  PPV     Sensitivity   Specificity45 and Up Study baselin...
Results from individual datasets                                  PPV        Sensitivity     Specificity45 and Up Study ba...
Results from individual datasets                                  PPV        Sensitivity     Specificity45 and Up Study ba...
Results from individual datasets                                 PPV     Sensitivity   SpecificityPharmaceutical Benefits ...
Results from 45 and Up Study, MBS and PBS data package                                        PPV     Sensitivity   Specif...
Results from 45 and Up Study, MBS and PBS data package                                        PPV     Sensitivity   Specif...
Results from hospital, 45 and Up Study, MBS and PBS datasets                                       PPV     Sensitivity   S...
Results from hospital, 45 and Up Study, MBS and PBS datasets                                       PPV     Sensitivity   S...
Strengths and weaknesses• Strengths   o Large, heterogeneous sample of women   o Complete capture for all public and priva...
Conclusions• Invasive breast cancer can be accurately ascertained  through administrative datasets other than the Cancer  ...
Conclusions• We had access to 45 and Up Study baseline survey,  hospital, MBS, and PBS data and needed to identify a  samp...
Acknowledgements• Participants of the 45 and Up Study• The 45 and Up Study is managed by the Sax Institute in  collaborati...
Acknowledgements• Staff at the Centre for Health Record Linkage• Other data custodians:   o NSW Ministry of Health   o Com...
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Anna Kemp | Ascertaining cases of invasive breast cancer in the 45 and Up Study: a validation study.

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Anna Kemp gave an update on her research using the 45 and Up Study data at our 2012 Annual 45 and Up Study Collaborators' Meeting.

This meeting is an annual event that offers our research partners, supporters and other interested parties the opportunity to receive a comprehensive update on the 45 and Up Study’s progress and updates on research projects that are using the Study resource. The meeting is also an opportunity for researchers, health decision makers and evaluators to engage and discuss the potential for maximising the Study’s value.

For more information, visit www.saxinstitute.org.au

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Anna Kemp | Ascertaining cases of invasive breast cancer in the 45 and Up Study: a validation study.

  1. 1. Ascertaining cases of invasive breastcancer in the 45 and Up Study:a validation study.Kemp A, Preen DB, Saunders C, Holman CDJ, Bulsara M,Rogers K, Roughead EE.
  2. 2. Background• Routinely-collected and self-reported health data are increasingly used to identify health status and service use• State-based cancer registries are considered the ‘gold standard’ for identifying breast cancer cases for research purposes o However researchers conducting survey-based studies or working with other datasets (e.g. hospital data) may need to identify cases without linkage to a cancer registry o ‘Temporary’ access problems with cancer registrations in New South Wales (NSW)
  3. 3. Background continued• Larger program of work examining use of prescription hormone therapies for invasive breast cancer in Australian practice (e.g. tamoxifen)• Planned to identify cases of invasive breast cancer through the NSW Cancer Registry o Power calculations based on cases diagnosed 2003-2009• We received all the datasets needed for the study except Cancer Registry records for 2009• Can we ascertain 2009 cases of invasive breast cancer using information from the other available datasets?
  4. 4. Objective• To determine the accuracy of hospital and outpatient services, prescription claims, and self-report for breast cancer in identifying cases of invasive breast cancer on the NSW Cancer Registry
  5. 5. Data sources• NSW Cancer Registry (gold standard) o date of diagnosis for all invasive breast cancers in NSW between 1 July 2004 to 31st December 2008• 45 and Up Study baseline data o self-reported demographic and clinical information• NSW Admitted Patients Data Collection o hospital separations for all public and private hospitals• Pharmaceutical Benefits Scheme o claims for government-subsidised dispensed prescription medicines• Medicare Benefits Schedule o claims for government-subsidised outpatient procedures and procedures in private hospitals
  6. 6. Breast cancer ‘flags’• Hospital diagnosis of invasive breast cancer o ≤ 6 months of diagnosis• Breast cancer surgery o ≤12 months of diagnosis o mastectomy or lumpectomy• Prescriptions dispensed o ≤18 months of diagnosis o tamoxifen, toremifene, anastrazole, exemestane, letrozole, goserelin, trastubumab, lapatinib• Breast radiotherapy o ≤18 months of diagnosis• Self-reported diagnosis breast cancer and age at diagnosis o within 12 months of date of diagnosis o analysis restricted to self-reports before January 2006
  7. 7. Analyses• Cases of invasive breast cancer recorded on the Cancer Registry during the study period were compared with flagged (suspected) cases• Comparison included o flags from individual datasets (e.g. hospital diagnosis) o clinically meaningful combinations of flags (e.g. hospital diagnosis and a dispensed medicine for breast cancer)• For each flag/s we calculated: o positive predictive value (PPV) o sensitivity o Specificity• We sought flags with high PPV (>90%) and within that, the highest specificity
  8. 8. Results• Of 143,010 women in the 45 and Up Study, 2661 (1.9%) had a recorded invasive breast cancer on the Cancer Registry during the study period o 681 occurred between 1 July 2004 and 31st December 2005 (this subgroup was compared against self-reported breast cancer)
  9. 9. Results from individual datasets PPV Sensitivity Specificity45 and Up Study baseline surveySelf-reported diagnosis 40.9% 73.0% 99.5%(12 month window)Hospital dataInpatient primary diagnosis 80.3% 85.2% 99.7%Lumpectomy 99.3% 61.3% 99.9%Mastectomy 99.2% 35.2% 99.9%Lumpectomy OR mastectomy 99.2% 86.3% 99.9%
  10. 10. Results from individual datasets PPV Sensitivity Specificity45 and Up Study baseline surveySelf-reported diagnosis 40.9% 73.0% 99.5%(12 month window)Self-reported diagnosis 72% of the ‘false positives’ had a record on the Cancer Registry for an earlier periodHospital dataInpatient primary diagnosis 80.3% 85.2% 99.7%Lumpectomy 99.3% 61.3% 99.9%Mastectomy 99.2% 35.2% 99.9%Lumpectomy OR mastectomy 99.2% 86.3% 99.9%
  11. 11. Results from individual datasets PPV Sensitivity Specificity45 and Up Study baseline surveySelf-reported diagnosis 40.9% 73.0% 99.5%(12 month window)Self-reported diagnosis 72% of the ‘false positives’ had a record on the Cancer Registry for an earlier periodHospital dataInpatient primary diagnosis 80.3% 85.2% 99.7%Lumpectomy 99.3% 61.3% 99.9%Mastectomy 99.2% 35.2% 99.9%Lumpectomy OR mastectomy 99.2% 86.3% 99.9%
  12. 12. Results from individual datasets PPV Sensitivity SpecificityPharmaceutical Benefits SchemeAny dispensed medicine 88.5% 68.5% 99.9%Medicare Benefits ScheduleBreast radiotherapy 95.8% 57.9% 99.9%
  13. 13. Results from 45 and Up Study, MBS and PBS data package PPV Sensitivity SpecificityBreast radiotherapy AND dispensed 95.8% 41.1% 99.9%medicineBreast radiotherapy OR dispensed 89.9% 85.3% 99.9%medicineBreast radiotherapy AND self-reported 70.2% 28.3% 99.9%diagnosisBreast radiotherapy AND dispensed 68.4% 19.4% 99.9%medicine AND self-reported diagnosis(Breast radiotherapy OR dispensed 67.8% 56.8% 99.9%medicine) AND self-reported diagnosisBreast radiotherapy OR dispensed 24.9% 94.1% 98.6%medicine OR self-reported diagnosis
  14. 14. Results from 45 and Up Study, MBS and PBS data package PPV Sensitivity SpecificityBreast radiotherapy AND dispensed 95.8% 41.1% 99.9%medicineBreast radiotherapy OR dispensed 89.9% 85.3% 99.9%medicineBreast radiotherapy AND self-reported 70.2% 28.3% 99.9%diagnosisBreast radiotherapy AND dispensed 68.4% 19.4% 99.9%medicine AND self-reported diagnosis(Breast radiotherapy OR dispensed 67.8% 56.8% 99.9%medicine) AND self-reported diagnosisBreast radiotherapy OR dispensed 24.9% 94.1% 98.6%medicine OR self-reported diagnosis
  15. 15. Results from hospital, 45 and Up Study, MBS and PBS datasets PPV Sensitivity Specificity(Lumpectomy or mastectomy) AND 99.4% 56.7% 99.9%diagnosis of invasive breast cancerAND dispensed medicine(Lumpectomy or mastectomy) AND 96.8% 91.6% 99.9%(diagnosis of invasive breast cancerOR breast radiotherapy)(Lumpectomy or mastectomy) AND 91.2% 93.7% 99.9%(diagnosis of invasive breast cancerOR dispensed medicine)(Lumpectomy or mastectomy) AND 90.8% 96.8% 99.9%(diagnosis of invasive breast cancerOR breast radiotherapy OR dispensedmedicine)
  16. 16. Results from hospital, 45 and Up Study, MBS and PBS datasets PPV Sensitivity Specificity(Lumpectomy or mastectomy) AND 99.4% 56.7% 99.9%diagnosis of invasive breast cancerAND dispensed medicine(Lumpectomy or mastectomy) AND 96.8% 91.6% 99.9%(diagnosis of invasive breast cancerOR breast radiotherapy)(Lumpectomy or mastectomy) AND 91.2% 93.7% 99.9%(diagnosis of invasive breast cancerOR dispensed medicine)(Lumpectomy or mastectomy) AND 90.8% 96.8% 99.9%(diagnosis of invasive breast cancerOR breast radiotherapy OR dispensedmedicine)
  17. 17. Strengths and weaknesses• Strengths o Large, heterogeneous sample of women o Complete capture for all public and private inpatient diagnoses and surgeries, subsidised outpatient procedures and medicines• Weaknesses o We could not identify how many false positives were DCIS vs. not breast cancer at all o The flags we have identified may not predict invasive breast cancer as well in younger women o Validity of the flags examined here may change over time with shifts in health service use
  18. 18. Conclusions• Invasive breast cancer can be accurately ascertained through administrative datasets other than the Cancer Registry• The most useful flags will depend on the research question and available datasets• Self report with date restriction had moderate sensitivity and low PPV, however specificity was very high o Suitable for excluding cases of breast cancer from a study sample
  19. 19. Conclusions• We had access to 45 and Up Study baseline survey, hospital, MBS, and PBS data and needed to identify a sample• The most useful flag or this purpose: o (Lumpectomy or mastectomy) AND (primary diagnosis of invasive breast cancer or breast radiotherapy) o 97% of those identified are true positives o 92% of cases on the Cancer Registry are identified
  20. 20. Acknowledgements• Participants of the 45 and Up Study• The 45 and Up Study is managed by the Sax Institute in collaboration with: • Cancer Council New South Wales (major partner) • National Heart Foundation of Australia (NSW Division) • NSW Ministry of Health • beyondblue: the national depression initiative • Ageing, Disability and Home Care NSW Family and Community Services • Australian Red Cross Blood Service • UnitingCare Ageing
  21. 21. Acknowledgements• Staff at the Centre for Health Record Linkage• Other data custodians: o NSW Ministry of Health o Commonwealth Department of Human Services o NSW Cancer Institute• The project was funded by: o Cancer Australia o National Breast Cancer Foundation
  22. 22. Questions

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