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Infertility and family building perspectives among adults with sickle cell disease

Tanvi Karkare1, Robert M Cronin2, Charleen Roche1

  • 1Center of Biobehavioral Health, Abigail Wexner Research Institute, Columbus, Ohio, USA.

British Journal of Haematology
|January 12, 2026
PubMed

Insights

Adults with sickle cell disease (SCD) often experience infertility but lack awareness. Increased education and counseling are crucial for managing fertility and reproductive health in SCD patients.

Area of Science:

  • Reproductive Medicine
  • Hematology
  • Patient-Reported Outcomes

Background:

  • Sickle cell disease (SCD) and its treatments can impair gonadal function.
  • Limited data exists on fertility outcomes and family-building perspectives in SCD patients.

Purpose of the Study:

  • To determine the frequency of infertility in adults with SCD.
  • To examine family-building goals, knowledge, and concerns among these individuals.

Main Methods:

  • 91 adults with SCD completed surveys on demographics, medical history, fertility status, and family-building perspectives.
  • Modified fertility surveys used in other populations were utilized.
  • Descriptive statistics analyzed the collected data.

Main Results:

  • Most participants desired children.
  • Approximately 50% met the clinical definition of infertility at some point.
  • Few individuals aware of their infertility status; most reported low to moderate fertility concerns due to lack of awareness.

Conclusions:

  • Infertility is common in adults with SCD, often unrecognized.
  • There is a significant need for enhanced infertility education and counseling for SCD patients.
  • Addressing awareness gaps can improve reproductive health management in this population.

Keywords:
family‐buildinginfertilitysickle cell disease

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