Capturing Fertility: A Qualitative Exploration of Retention of a Fertility Consult in Sickle Cell Disease.

Abstract

This qualitative study assessed the perceptions of caregivers of adolescents with sickle cell disease regarding fertility preservation consultation before stem cell transplant, through semistructured interviews. We interviewed 7 caregiver-adolescent dyads and 1 caregiver whose child didn't meet inclusion criteria due to age. Thematic analysis revealed 3 major inter-related themes: burden of sickle cell disease, decisional regret about reproductive choices, and hope that infertility would not impact them. Our study found that comprehension about the potential for infertility varied significantly, with a strong underlying hope that infertility will not impact them. Many of our caregivers and adolescents indicated decisional regret, suggesting they would now make a different choice about fertility preservation before transplant. Conversations and communication surrounding infertility in the setting of stem cell transplant is vital for our patients to understand the long-term impacts of curative therapy, to best ensure that their long-term quality of life goals will be met. Though the recent movement towards reduced intensity conditioning regimens in SCT may prove less gonadotoxic, fertility outcome data are not yet known. This study underscores the importance of effective communication during dedicated fertility consultations to help families make informed decisions for their children.