Fertility, family building, and contraception in adolescents and young adults with sickle cell disease: a scoping review

Objective

To identify the current state of knowledge among adolescent and young adults (AYAs) with sickle cell disease (SCD) on fertility, family building, and contraception. We aimed to identify recommendations and guidance for communication strategies and counseling methods in these areas.

Design

Full-text publications were included if they focused on individuals with SCD, were published in English in peer-reviewed journals, and addressed patient or family knowledge of fertility, family building, or contraception. A comprehensive search using PubMed, CINAHL, Ovid MEDLINE, Embase, and PsycINFO was performed. Multiple reviewers independently assessed each abstract for inclusion, and a senior librarian resolved disagreements.

Results

Of 2,885 publications screened, 314 underwent full review, and 11 were included. Of the included studies, three discussed fertility only, two discussed family building only, two discussed contraception only, two discussed contraception and fertility, one discussed contraception and family building, and one discussed fertility and family building. Two overarching gaps were identified: a lack of counseling related to reproductive healthcare provided to AYAs with SCD and limited knowledge regarding their own disease sequelae.

Conclusion

Many AYAs are not counseled and are not knowledgeable about their fertility risks, family building options, and contraception choices. Furthermore, previous counseling guidelines on these subjects are limited, leading to incomplete and highly variable discussions between patient and clinicians on these subjects. This review highlights counseling recommendations and areas in which more concrete guidelines and evidence are important for the standardization of comprehensive reproductive healthcare in the AYA SCD population.