Each year, there are 300,000 sudden cardiac death (SCD) fatalities in the Hispanic population. Health guidelines recommend screening for those who may have a cardiac genetic mutation since it is more available and affordable than ever before. This screening will identify those who have cardiac conditions, in an effort to implement appropriate treatment and management.
The researchers conducted this experiment to assess the quality of life (QoL) and the themes Dominicans who had cardiac genetic testing for their irregular heartbeat (arrhythmia) or abnormal heart muscles (cardiomyopathy) may have in common with each other. There were 31 participants, 22 males and 9 females, who had an average age of 42 years old. The researchers administered the Medical Outcomes Study Short Form-36 (SF-36) and semi-structured qualitative interviews. The SF-36 asks questions that have to deal with ones’ vitality, physical functioning, bodily pain, general health perceptions, physical role functioning emotional role functioning, social role functioning and mental health.
The major themes, that were most common among the participants, dealt with fear and concern of the illness affecting them and their families despite having time to adjust to their diagnoses. Even though the participants had a high mental health score from the QoL assessment, they still perceived their risk for serious cardiac events to be very high. The researchers presume this feeling may be due to a misunderstanding of genetics and/or a traumatic cardiac event they may have experienced in the past. Studies have shown that although the general public view genetic testing positively, they have a weak understanding of the basic principles of inheritance. Their understanding of genetics could also be interfered through emotional needs, one might have their coping strategies compromised or hold nonscientific beliefs of their condition.
This research lays the framework for future study of the Dominican population in regards to perceptions of genetic testing. The prospective studies may address the challenges with culture, language, and genomic understanding in this population that is associated with the evolving field of genetic technology.
Written by Gregory McDaniel, Visiting Student in Research.