Feasibility of a healthcare system-based tetralogy of Fallot patient registry
| Autor: | Eric G. Jernigan, Jennifer S. Nelson, Audrey L. Khoury, Muntasir H. Chowdhury, Laura R. Loehr |
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| Rok vydání: | 2017 |
| Předmět: |
Adult
Male medicine.medical_specialty Adolescent 030204 cardiovascular system & hematology Young Adult 03 medical and health sciences 0302 clinical medicine Surveys and Questionnaires 030225 pediatrics Epidemiology North Carolina medicine Humans Registries Retrospective Studies Tetralogy of Fallot Patient registry Descriptive statistics business.industry Incidence General Medicine Middle Aged medicine.disease Family medicine Pediatrics Perinatology and Child Health Feasibility Studies Female Electronic data Diagnosis code Morbidity Outcomes research Cardiology and Cardiovascular Medicine business Delivery of Health Care Follow-Up Studies Healthcare system |
| Zdroj: | Cardiology in the Young. 28:269-275 |
| ISSN: | 1467-1107 1047-9511 |
| Popis: | BackgroundPatient-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.MethodsAdult 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.ResultsIn 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.ConclusionsAlthough 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. |
| Databáze: | OpenAIRE |
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