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Sickle Cell Trait – What Does Disclosure Look Like for Parents?

April 22, 2022

In a recently released article in Pediatrics (10.1542/peds.2021-053454), Dr. Alexandra Sims and colleagues present results of interviews with 16 parents whose 2-12 months old infants have sickle cell trait (SCT). The researchers asked about parental experiences with SCT disclosure and counselling. SCT trait is common, especially among Black Americans, and while largely asymptomatic through infancy and childhood, has significant health and reproductive implications in later life. Using a script with open-ended queries and prompts, the study team was able to elucidate key themes that can help primary care physicians make sure parents are informed and comfortable with their child’s diagnosis.

The authors identified 5 key themes: the two that intrigued me most were “Parent Knowledge Prior to Child’s SCT Disclosure,” which was very limited among the majority of parents, and “Emotions and Actions After SCT Disclosure,” which included a range from surprise to relief to negative feelings, but with only 2 parents seeking SCT testing for themselves following the disclosure. This aligns with my clinical experiences, and emphasizes the need for comprehensive education and support, both from a physician or other knowledgeable health provider and from the community.  Locally, we rely on the American Sickle Cell Anemia Association, which aids in the follow up of newborns who screen positive for SCT and offers family testing and counselling, and complements providers’ teaching.

But parents in this study also appropriately identified the need to continue to re-visit the implications of SCT throughout the course of their child’s well child visits. This is such an important point for pediatricians, since it aligns on one hand with parents’ desires, expressed in study interviews, for more comprehensive information about the health and reproductive impacts of SCT, and on the other hand with an approach that offers timely, relevant and “bite-size” information about SCT (since it’s not reasonable to consider sports, military training and reproductive repercussions of SCT in the first year of life).  My main “take home” from this great article is that I need to pay attention to the fact that when SCT is on a patient’s problem list; I must remember to speak to the child and parent about age-relevant implications of SCT at each visit. Share your “take home” with us at Facebook, Twitter, and Instagram!

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