The Importance of Research to the ACHD Patient

Perhaps what any of us may think about our congenital heart disease (CHD) may not necessarily based on scientific fact. It may stem from us clinging to our thoughts or beliefs despite any scientific evidence. For example, in sports, we are often superstitious. I know I am! If I do not watch the game, my team will win. If I watch, they will lose. I have no actual evidence to support this belief, of course.

So, in trying to define or solve problems, the scientific community uses a method. We all probably remember it from seventh grade: define the problem, formulate a hypothesis, gather data, analyze and interpret results. The ways we choose to gather data will influence how we analyze it.

For instance, observational design is one way to learn information about a population. Examples include cross sectional surveys. This design includes gathering information from a group at a single point in time. This is useful to establish a prevalence of disease.

Another option is the cohort study design, which includes a few different methods. We can gather medical records and look back in time to answer a question. This is a retrospective cohort study. In a prospective cohort, researchers enroll people and watch them over a period of time.

There are many more study design options, but no matter what type of study fits the needs of the researcher, inclusion criteria—characteristics that prospective subjects have to have—must be clearly defined. The research proposal must be submitted to an Institutional Review Board (IRB), which determines if the study is safe and ethical. Once the IRB grants permission for the study to begin, researchers determine who is eligible for their study and begin to enroll participants. All participants must sign an informed consent form making them aware of any risks and benefits associated with participation in the study.

In 2014 at the 7^th ACHA National Conference in Chicago, Dr. Teresa Lyle and I recruited participants for our study on the utilization of a physical activity recommendation form for ACHD patients. The way we enrolled participants is referred to as a convenience sample. This means, we enrolled whoever was there at the time and met our inclusion criteria.

These types of studies usually do not provide the strongest results because they are not representative of the target population. However, in our case, adults with congenital heart defects were our target population. Many members of ACHA—65 to be exact—participated in our study.

We presented our results at the 8^th ACHA National Conference in Orlando. We are also submitting a manuscript to the Journal of Congenital Cardiology. Once we have submitted the manuscript, where it will be reviewed by our peers in the field, we hope to share the results with you in a subsequent blog. This process is similar to most research. Once the results are peer-reviewed and published, the information is shared with the public.

In summary, once someone’s work is reviewed by peers in the field, information is disseminated, and then more steps take place:

• More and more research will be conducted based off results.
• Norms and protocols will develop out of many consistent valid and reliable studies supporting the original evidence.
• Slowly, practices begin to change to accommodate the new information.