Complementary medicine use in the adult congenital heart community: what evidence do patients need and want?




Poster session 5


Thursday 27 October 2016 - 10:30 to 11:00


All authors in correct order:

Verstappen A1, Kuehl K2, Wieland LS1
1 Cochrane Complementary Medicine, USA
2 George Washington University School of Medicine (Emeritus), USA
Presenting author and contact person

Presenting author:

Amy Verstappen

Contact person:

Abstract text
Background: An estimated 13 million adults worldwide are living with congenital heart disease (CHD), representing the largest population of birth defect survivors. They experience high rates of morbidity and mortality resulting in high utilization of medication and health services. Although older people with chronic diseases tend to have high rates of complementary medicine (CAM) use, there is no research on CAM utilization in the adult CHD population, and little research on CAM utilization in adult survivors of childhood-onset disease. Learning more about adult CHD and CAM will help identify systematic review research questions of high priority to these patients. It will also pilot new strategies for soliciting patient information for inclusion in the CAM research prioritization process.

Objectives: To understand CAM utilization and information needs for adults with CHD.

Methods: An internet-based survey on CAM use will be conducted via 50+ CHD-specific USA-based social media sites. This approach will maximize recruitment for patients in and out of care. Respondents will self-identify as a congenital heart patient over age 18. No additional diagnostic or other CHD-related information will be gathered.

Results: Results from a minimum of 200 self-identified adults living with CHD will be presented. We will report overall prevalence of CAM utilization and utilization rates of specific CAM therapies. We will report the rates of CAM use for general wellness, and to address cardiac and non-cardiac health problems. We will identify whether patients have discussed their CAM utilization with their healthcare team, and the extent to which they are satisfied with available CAM information. Final results will be presented at the Colloquium.

Conclusions: We will determine patterns of CAM utilization and explore how needs for information relate to existing research and systematic review resources. We will also explore the suitability of our social media recruitment, survey design, and online methods for further identification of CAM evidence needs in this and other defined patient populations nationally and internationally.