Beliefs and Practices Among Adults with Sickle Cell Disease Regarding Reproductive Health Decisions and Family Planning
Bibliographic record
Abstract
Background. With improvements in early diagnosis and health care for those with sickle cell disease (SCD), many affected are living longer and having families of their own. Despite medical advancements in this field, pregnancy in this population is still associated with an increased risk for maternal and infant morbidity and mortality compared to the general population. Due to increased maternal risks associated with childbirth and the risk of having children who inherit the disease, communication between providers and patients regarding reproductive health is imperative. However, providers' understanding of reproductive health knowledge and perceptions within this population and methods to improve family planning education which can result in autonomous and informed decisions amongst adults with SCD is still limited. Our study aims to quantify current knowledge and perceptions in adults with SCD regarding reproductive health choices and genetic counseling. Methodology. Study participants had to be at least 18 years old and have a diagnosis of SCD. Participants were asked to complete an anonymous survey instrument consisting of 43 questions that was 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: 1) through online social media via Facebook and Twitter sickle cell patient groups; 2) patients at an adult sickle cell clinic were invited to complete the survey in clinic or afterwards. A total of 152 participants accessed the survey, and of those, 105 that completed more than 90% of the survey, were used in the analysis. Results. Demographics: Participants were between 18-57 years of age, 85 females (81.0%), 19 males (18.1%), and 1 transgender (1.0%). Among 99 people who disclosed their place of birth, 49 (49.5%) were from North America (U.S. and Canada), 38 (38.4%) were from African countries, and 12 (12.1%) were from other parts of the world. Fifty-six (53.5%) reported having no children and 49 (46.7%) had a minimum of one child. Knowledge: Ninety-three (88.6%) agreed that women with SCD are at a higher risk of pregnancy complications and 82 (78.1%) understood the chance of having a child with SCD if both parents have the trait. However, one-third (33.3%) did not know that women with hemoglobin SS will always pass down the trait to their children, and 90 (85.7%) were unaware of contraceptive methods available that have been shown to reduce the risk of sickle cell crisis. Perception: Sixty-four (61.5%) participants agreed that having children in the future was very important to them. Majority, 96 (91.4%), also agree that they want to avoid having a child with SCD. Fifty-eight (55.2%) indicated they received a majority of their information about partner screening, and reproductive health from a healthcare provider while 47 (44.8%) reported receiving most of their information from other sources (school, family members, friends, and independent research). Fifty-nine (59.6%) out of the 89 participants who responded agreed that they wished they had more conversations about partner screening and reproductive health with their hematologist. Seventy-five (72.1%) respondents reported that they know what a genetic counselor is and 40 (39.2%) reported having formal genetic counseling in the past. Among those who know what a genetic counselor was, only 30 (40.0%) actually knew how to get in contact with a genetic counselor in their community. Of those that have had formal genetic counseling in the past 15 (37.5%) reported having formal genetic counseling by a genetic counselor, while 25 (62.5%) had some form of counseling by another healthcare provider (i.e. hematologist, gynecologist, PCP, other); and 24 (60%) had one child or more. Conclusion. Our study suggests that many individuals with SCD may still lack important reproductive health and genetic counseling knowledge and resources. We believe that improved communication between healthcare providers and SCD patients is wanted and needed by this population to prevent pregnancy-related complications and improve outcomes. Future studies should focus on genetic counseling access, and reproductive health and family planning education to promote ongoing discussions and increase knowledge of both providers and individuals with SCD. 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:Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees; Novartis: Membership on an entity's Board of Directors or advisory committees; Pfizer: Consultancy.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".