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Feasibility of a healthcare system-based tetralogy of Fallot patient registry

Published online by Cambridge University Press:  29 August 2017

Audrey L. Khoury ,
Eric G. Jernigan ,
Muntasir H. Chowdhury ,
Laura R. Loehr  and
Jennifer S. Nelson
Audrey L. Khoury
Affiliation:
Department of Surgery, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America
Eric G. Jernigan
Affiliation:
Department of Surgery, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America
Muntasir H. Chowdhury
Affiliation:
Department of Surgery, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America
Laura R. Loehr
Affiliation:
Department of Epidemiology, University of North Carolina Gillings School of Global Public Health, Chapel Hill, North Carolina, United States of America
Jennifer S. Nelson*
Affiliation:
Department of Surgery, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America
*
Correspondence to: J. S. Nelson, MD, MS, Department of Cardiothoracic Surgery, Nemours Children’s Hospital, 13535 Nemours Parkway, Orlando, FL 32827, United States of America. Tel: 407 414 8804; Fax: 321 388 0100; E-mail: Jennifer.Nelson@nemours.org
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Abstract

Background

Patient-reported outcomes and epidemiological studies in adults with tetralogy of Fallot are lacking. Recruitment and longitudinal follow-up investigation across institutions is particularly challenging. Objectives of this study were to assess the feasibility of recruiting adult patients with tetralogy of Fallot for a patient-reported outcomes study, describe challenges for recruitment, and create an interactive, online tetralogy of Fallot registry.

Methods

Adult patients living with tetralogy of Fallot, aged 18–58 years, at the University of North Carolina were identified using diagnosis code query. A survey was designed to collect demographics, symptoms, history, and birth mother information. Recruitment was attempted by phone (Part I, n=20) or by email (Part II, n=20). Data analysis included thematic grouping of recruitment challenges and descriptive statistics. Feasibility threshold was 75% for recruitment and for data fields completed per patient.

Results

In Part I, 60% (12/20) were successfully contacted and eight (40%) were enrolled. Demographics and birth mother information were obtained for all enrolled patients. In Part II, 70% (14/20) were successfully contacted; 30% (6/20) enrolled and completed all data fields linked to REDCap database; the median time for survey completion was 8 minutes. Half of the patients had cardiac operations/procedures performed at more than one hospital. Automatic electronic data entry from the online survey was uncomplicated.

Conclusions

Although recruitment (54%) fell below our feasibility threshold, enrolled individuals were willing to complete phone or online surveys. Incorrect contact information, privacy concerns, and patient-reported time constraints were challenges for recruitment. Creating an online survey and linked database is technically feasible and efficient for patient-reported outcomes research.

Keywords

Adult CHDtetralogy of Fallotregistrypatient-reported outcomes
Type
Original Articles
Information
Cardiology in the Young , Volume 28 , Issue 2 , February 2018 , pp. 269 - 275
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Copyright
© Cambridge University Press 2017 

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Footnotes

†

Current address Joan C. Edwards School of Medicine, Marshall University, Huntington, West Virginia, United States of America

‡

Current address: Nemours Children’s Hospital, Orlando, Florida, United States of America

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