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  • Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart surgery
  • Sara K. Pasquali, Chitra Ravishankar, Jennifer C. Romano, Kristin Kane, Suzanne Viers, Andrea Kennedy, Nancy Burnham, Ray Lowery, Karen Uzark, Lauren Retzloff, Jonathon J. Rome, Joseph W. Rossano, John R. Charpie, Thomas L. Spray, Michael G. Gaies, Richard G. Ohye, J. William Gaynor
  • Journal: Cardiology in the Young / Volume 26 / Issue 8 / December 2016
  • Published online by Cambridge University Press: 02 February 2017, pp. 1590-1596
  • View abstract
    Background

    With improvements in early survival following congenital heart surgery, it has become increasingly important to understand longer-term outcomes; however, routine collection of these data is challenging and remains very limited. We describe the development and initial results of a collaborative programme incorporating standardised longitudinal follow-up into usual care at the Children’s Hospital of Philadelphia (CHOP) and University of Michigan (UM).

    Methods

    We included children undergoing benchmark operations of the Society of Thoracic Surgeons. Considerations regarding personnel, patient/parent engagement, funding, regulatory issues, and annual data collection are described, and initial follow-up rates are reported.

    Results

    The present analysis included 1737 eligible patients undergoing surgery at CHOP from January 2007 to December 2014 and 887 UM patients from January 2010 to December 2014. Overall, follow-up data, of any type, were obtained from 90.8% of patients at CHOP (median follow-up 4.3 years, 92.2% survival) and 98.3% at UM (median follow-up 2.8 years, 92.7% survival), with similar rates across operations and institutions. Most patients lost to follow-up at CHOP had undergone surgery before 2010. Standardised questionnaires assessing burden of disease/quality of life were completed by 80.2% (CHOP) and 78.4% (UM) via phone follow-up. In subsequent pilot testing of an automated e-mail system, 53.4% of eligible patients completed the follow-up questionnaire through this system.

    Conclusions

    Standardised follow-up data can be obtained on the majority of children undergoing benchmark operations. Ongoing efforts to support automated electronic systems and integration with registry data may reduce resource needs, facilitate expansion across centres, and support multi-centre efforts to understand and improve long-term outcomes in this population.

The Cambridge Handbook of International Prevention Science
  • The Cambridge Handbook of International Prevention Science
  • Edited by Moshe Israelashvili, John L. Romano
  • Published online: 21 January 2017
  • Print publication: 19 December 2016
  • View description
    The Cambridge Handbook of International Prevention Science offers a comprehensive global overview on prevention science with the most up-to-date research from around the world. Over 100 scholars from 27 different countries (including Australia, Bhutan, Botswana, India, Israel, Mexico, Singapore, South Korea, Spain and Thailand) contributed to this volume, which covers a wide range of topics important to prevention science. It includes major sections on the foundations of prevention as well as examples of new initiatives in the field, detailing current prevention efforts across the five continents. A unique and innovative volume, The Cambridge Handbook of International Prevention Science is a valuable resource for established scholars, early professionals, students, practitioners and policy-makers.

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