Background. Sickle cell disease (SCD) remains the most common genetic hematologic disorder, with a disproportionally high incidence and prevalence in African countries. It is associated with an increased risk of maternal and infant morbidity and mortality compared to the general population. As more young adults living with SCD reach healthier reproductive ages, it is imperative that there is open communication between providers and patients regarding reproductive health, maternal risks associated with childbirth, and the risk of having children who inherit SCD. It is also important that providers understand reproductive health knowledge and perceptions within this population and methods to improve family planning education. We performed a survey-based study aimed to quantify current knowledge and perceptions regarding reproductive health choices, family planning and genetic counseling-presented in another abstract-. Here we present a sub-analysis, aiming to quantify differences, based on the participants region, concerning reproductive health knowledge and perceptions amongst adults with SCD.
Methodology. All study participants were at least 18 years old and have a SCD diagnosis. They were asked to complete an anonymous survey instrument consisting of 43 questions, administered using Qualtrics Survey Software. The survey was comprised of questions about participants' demographics, knowledge base and perceptions about reproductive health and genetic counseling. Participants were recruited using convenience sampling in two ways. The first was through reaching sickle cell patient groups online via social media through Facebook and Twitter. The second was at an adult SCD clinic where participants were invited to complete the survey in clinic or afterwards. 152 participants accessed the survey, and 105 that completed more than 90% of the survey were included in the primary analysis. Further analysis was done to compare data from 70 participants who did not migrate from their reported birth country. Comparison groups were generated using reported birth country and current location. Forty-seven participants from North American (U.S. and Canada) and 23 from African Countries (Nigeria, Zambia, Kenya, and South Africa) were included in this analysis.
Results. Demographics: Among the 70 analyzed, 47 (67.1%) respondents were from North America (N.A.) and 23 (32.9%) were from African Countries (A.C). Knowledge: People from both N.A. and A.C. agreed that women with SCD were at higher risk of pregnancy complications (91.5% and 87%, respectively), and understood the chance of having a child with SCD if both parents have the trait (78.7% and 78.3%). Perception: Participants from N.A. reported receiving most of their information about family planning, partner screening, and reproductive health from healthcare providers more frequently than participants from A.C. (67% vs 39%). More participants from A.C, 21 (91.3%), agreed that having children in the future was important to them, while 21 (45%) of the participants from N.A agreed to this. Participants from A.C. and N.A. equally agreed that is it important to know if their partner has the sickle cell trait (SCT) (95.7% and 93.6%). However, more participants from A.C., 21 (91.3%), reported having any discussion with their partner about being screened for the SCT, versus 29 (61.8%) from N.A. Participants from N.A. and A.C. were equally knowledgeable about what a genetic counselor is (72% v. 70%, respectively), and utilized genetic counseling at low rates (37% v. 39.1%, respectively). Most participants reported that they do not know how to get in contact with a genetic counselor in their community, 31 (66%) from N.A. and 18 (78.3%) from A.C. Many have not been referred to a genetic counselor in the past by a healthcare provider, 39 (83%) from N.A. and 20 (87%) from A.C.
Conclusion. Our study suggests that there are differences in reproductive health and genetic counseling knowledge and perceptions when comparing SCD participants living in two world regions. Independently of regional differences, many people with SCD appear to lack key reproductive health and genetic counseling knowledge and resources. We believe there is a need for improved communication between providers and patients in family planning education, as well as further studies to address access to reproductive health and genetic counseling resources.
Disclosures
Nunez: American Board of Genetic Counseling: Membership on an entity's Board of Directors or advisory committees; Foundation for Women and Girls with Blood Disorders: Membership on an entity's Board of Directors or advisory committees. De Castro:Novartis: Membership on an entity's Board of Directors or advisory committees; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees; Pfizer: Consultancy.
A participation model based on community forum as a reproductive health knowledge transaction space to increase male participation in vasectomy
