Skip to main content
SpringerLink
Log in

Use of National Death Registries to Empower Databases in Reporting Longitudinal Follow-Up

  • Chapter
  • First Online:
Pediatric and Congenital Cardiac Care

  • 1477 Accesses

Abstract

National databases are beginning to play a key role in the care of patients by predicting prognosis of particular treatment, defining risk factors, and aiding with the selection of patients for particular treatments. These databases also help to establish standards of care, which are gaining importance as government is beginning to emphasize on “pay for performance” programs. Medical societies are therefore establishing databases that can provide relevant and accurate clinical information for these purposes. The increase in number of medical societies using their own database for research and improvement in quality of care has sparked new challenges. Societies particularly related to procedure-based specialties usually lack the ability to record longitudinal follow-up data for mortality, as providers in these specialties often follow their patients only for a short period of time after the procedure. This limitation in longitudinal data regarding “late” mortality can be overcome by linking these national databases with national registries of death. Herein, an example of a surgical society is presented to demonstrate how a national death registry is used to empower a national database. The information gathered, the comparisons outlined, and the processes used to determine the best combination of indices of death for this society should be translatable and hopefully useful for other societies and registries who wish to empower their databases with long-term national data about mortality.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
eBook
USD 16.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Jacobs JP, O’Brien SM, Shahian DM, Edwards FH, Badhwar V, Dokholyan RS, Sanchez JA, Morales DL, Prager RL, Wright CD, Puskas JD, Gammie JS, Haan CK, George KM, Sheng S, Peterson ED, Shewan CM, Han JM, Bongiorno PA, Yohe C, Williams WG, Mayer JE, Grover FL. Successful linking of the Society of Thoracic Surgeons Database to Social Security data to examine the accuracy of Society of Thoracic Surgeons mortality data. J Thorac Cardiovasc Surg. 2013;145(4):976–83. doi:10.1016/j.jtcvs.2012.11.094. PMID: 23497944.

    Article  PubMed  Google Scholar 

  2. Gibbs JL, Monro JL, Cunningham D, Rickards A. Survival after surgery or therapeutic catheterisation for congenital heart disease in children in the United Kingdom: analysis of the central cardiac audit database for 2000–1. BMJ. 2004;328:611.

    Article  PubMed Central  PubMed  Google Scholar 

  3. Maruszewski B, Lacour-Gayet F, Monro JL, Keogh BE, Tobota Z, Kansy A. An attempt at data verification in the European Association for Cardio-Thoracic Surgery Congenital Database. Eur J Cardiothorac Surg. 2005;28:400–4.

    Article  PubMed  Google Scholar 

  4. Centers for Disease Control and Prevention, National Death Index. http://www.cdc.gov/nchs/ndi.htm. Accessed June 2013.

  5. Morales DLS, McClellan AJ, Jacobs JP. Empowering a database with national long-term data about mortality: the use of national death registries. In: 2008 Supplement to Cardiology in the Young: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiol Young. 2008;18 Suppl 2:188–95.

    Article  PubMed  Google Scholar 

  6. National Death Index User Fees. http://www.cdc.gov/nchs/data/ndi/Users_Fees_Worksheet.pdf. Accessed June 2013.

  7. Schisterman EF, Whitcomb BW. Use of the Social Security Administration Death Master File for ascertainment of mortality status. Popul Health Metr. 2004;2:2.

    Article  PubMed Central  PubMed  Google Scholar 

  8. Cowper DC, Kubal JD, Maynard C, Hynes DM. A primer and comparative review of major U.S. mortality databases. Ann Epidemiol. 2002;12:462–8.

    Article  PubMed  Google Scholar 

  9. Buchanich JM, Dolan DG, Marsh GM, Madrigano J. Underascertainment of deaths using Social Security Records: a recommended solution to a little-known problem. Am J Epidemiol. 2005;162:193–4.

    Article  PubMed  Google Scholar 

  10. Service to Epidemiological Researchers to provide Vital Status Data on Subjects of Health Research. http://www.ssa.gov/policy/about/epidemiology.html. Accessed June 2013.

  11. Lash TL, Silliman RA. A comparison of the National Death Index and Social Security Administration databases to ascertain vital status. Epidemiology. 2001;12:259–61.

    Article  CAS  PubMed  Google Scholar 

  12. Jacobs JP, Edwards FH, Shahian DM, Prager RL, Wright CD, Puskas JD, Morales DL, Gammie JS, Sanchez JA, Haan CK, Badhwar V, George KM, O’Brien SM, Dokholyan RS, Sheng S, Peterson ED, Shewan CM, Feehan KM, Han JM, Jacobs ML, Williams WG, Mayer Jr JE, Chitwood Jr WR, Murray GF, Grover FL. Successful linking of the Society of Thoracic Surgeons database to social security data to examine survival after cardiac operations. Ann Thorac Surg. 2011;92(1):32–9. PMID: 21718828.

    Article  PubMed  Google Scholar 

  13. Dokholyan RS, Muhlbaier LH, Falletta J, Jacobs JP, Shahian D, Haan CK, Peterson ED. Regulatory and ethical considerations for linking clinical and administrative databases. Am Heart J. 2009;157(6):971–82. PMID: 19464406.

    Article  PubMed  Google Scholar 

  14. Blackstone EH. Demise of a vital resource. J Thorac Cardiovasc Surg. 2012;143:37–8.

    Article  PubMed  Google Scholar 

  15. Jacobs JP, Edwards FH, Shahian DM, Haan CK, Puskas JD, Morales DLS, Gammie JS, Sanchez JA, Brennan JM, O’Brien SM, Dokholyan RS, Hammill BG, Curtis LH, Peterson ED, Badhwar V, George KM, Mayer Jr JE, Chitwood WR, Murray GF, Grover FL. Successful linking of the Society of Thoracic Surgeons adult cardiac surgery database to Centers for Medicare and Medicaid Services Medicare data. Ann Thorac Surg. 2010;90:1150–7.

    Article  PubMed  Google Scholar 

  16. Jacobs JP, Shahian DM, Edwards FH, O’Brien SM, Blackstone EH, Puskas JD, Schaffer J, Grover FL, Mayer Jr JE. Reply to letter to the editor: strategies to longitudinally track mortality. Ann Thorac Surg. 2012;94(2):693–4. PMID: 22818334.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Cardiothoracic Surgery, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave. MLC 2013, Cincinnati, OH, 45229, USA

    David L. S. Morales MD

  2. Department of Cardiothoracic Surgery, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave., Cincinnati, OH, 45229, USA

    Farhan Zafar MD

  3. Division of Cardiac Surgery, Department of Surgery, Johns Hopkins All Children’s Heart Institute, All Children’s Hospital and Florida Hospital for Children, Johns Hopkins University, Saint Petersburg, Tampa and Orlando, FL, USA

    Jeffrey P. Jacobs MD, FACS, FACC, FCCP

  4. Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University, Baltimore, MD, USA

    Jeffrey P. Jacobs MD, FACS, FACC, FCCP

Authors
  1. David L. S. Morales MD
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Farhan Zafar MD
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jeffrey P. Jacobs MD, FACS, FACC, FCCP
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to David L. S. Morales MD .

Editor information

Editors and Affiliations

  1. School of Medicine,, University of Oslo, Oslo, Norway

    Paul R. Barach

  2. Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University, Division of Cardiac Surgery, Department of Surgery, Johns Hopkins All Children’s Heart Institute, All Children’s Hospital and Florida Hospital for Children, Johns Hopkins University, St. Petersburg, Tampa, Orlando, FL, USA,, Baltimore, Maryland, USA

    Jeffery P. Jacobs

  3. Wayne State University, Detroit, Michigan, USA

    Steven E. Lipshultz

  4. The Hospital for Sick Children, Toronto, Ontario, Canada

    Peter C. Laussen

Rights and permissions

Reprints and permissions

Copyright information

© 2015 Springer-Verlag London

About this chapter

Cite this chapter

Morales, D.L.S., Zafar, F., Jacobs, J.P. (2015). Use of National Death Registries to Empower Databases in Reporting Longitudinal Follow-Up. In: Barach, P., Jacobs, J., Lipshultz, S., Laussen, P. (eds) Pediatric and Congenital Cardiac Care. Springer, London. https://doi.org/10.1007/978-1-4471-6587-3_31

Download citation

  • DOI: https://doi.org/10.1007/978-1-4471-6587-3_31

  • Published:

  • Publisher Name: Springer, London

  • Print ISBN: 978-1-4471-6586-6

  • Online ISBN: 978-1-4471-6587-3

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation