Implementation of a data management program in a pediatric cancer unit in a low income country

Authors

  • Lisa Ayoub BS,

    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
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  • Ligia Fú MD,

    1. Hemato-Oncología Pediátrica, Hospital Escuela, Tegucigalpa, Honduras
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  • Armando Peña MD,

    1. Hemato-Oncología Pediátrica, Hospital Escuela, Tegucigalpa, Honduras
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  • Jose Manuel Sierra,

    1. Hemato-Oncología Pediátrica, Hospital Escuela, Tegucigalpa, Honduras
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  • Pablo Cesar Dominguez,

    1. Hemato-Oncología Pediátrica, Hospital Escuela, Tegucigalpa, Honduras
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  • Ching-Hon Pui MD,

    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
    2. Department of Hematology-Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    3. Department of Pediatrics, University of Tennessee College of Medicine, Memphis, Tennessee
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    • Ching-Hon Pui has been named the American Cancer Society F.M. Kirby Clinical Research Professor.

  • Yuri Quintana PhD,

    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
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  • Alicia Rodriguez BS,

    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
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  • Ronald D. Barr MB, ChB,MD,

    1. McMaster University and McMaster Children's Hospital, Hamilton, Canada
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  • Raul C. Ribeiro MD,

    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
    2. Department of Hematology-Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    3. Department of Pediatrics, University of Tennessee College of Medicine, Memphis, Tennessee
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  • Monika L. Metzger MD,

    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
    2. Department of Hematology-Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    3. Department of Pediatrics, University of Tennessee College of Medicine, Memphis, Tennessee
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  • Judy A. Wilimas MD,

    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
    2. Department of Hematology-Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    3. Department of Pediatrics, University of Tennessee College of Medicine, Memphis, Tennessee
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  • Scott C. Howard MD, MS

    Corresponding author
    1. International Outreach Program, St. Jude Children's Research Hospital, Memphis, Tennessee
    2. Department of Hematology-Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    3. Department of Pediatrics, University of Tennessee College of Medicine, Memphis, Tennessee
    • International Outreach Program, St. Jude Children's Research Hospital, 332 N. Lauderdale St., Memphis, TN 38105-2794.
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Abstract

Introduction

Pediatric cancer units in low-income countries lack data on which to base quality improvement initiatives. We implemented a data management program in the oncology unit of the children's hospital of Tegucigalpa, Honduras, and then we assessed training and supervision of data managers, data accuracy, and completeness as well as obstacles encountered.

Methods

Training included 2 days of off-site hands-on instruction in the use of an online database, daily on-site supervision by physicians, periodic online meetings for education and problem-solving, and continuous e-mail support.

Results

Of the 652 patients diagnosed with acute leukemia between July 1995 and June 2005, 150 (23%) had not yet been registered in the database at the time of audit and 65 (10%) had missing medical records. The remaining 437 charts (67%) were reviewed by an external auditor and compared to the data entered previously by the two trained data managers. Protocol information was incomplete in 30% of cases, and the cause of death was inaccurate in 18%. All other data were 99% accurate and 93%–100% complete. Obstacles included a limited medical records system, poor organization of the charts, missing records, inconsistently documented protocol information, data managers who lack a medical background, and slow or unreliable internet connections.

Conclusion

Data managers can be trained to effectively collect basic pediatric oncology data in a low-income country. Addressing inadequacies in the medical record system while providing specific training in protocol-based care and determination of cause of death for both physicians and data managers will improve data quality. Pediatr Blood Cancer 2007;49:23–27. © 2006 Wiley-Liss, Inc.

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