Infertility and treatment‐seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry

Abstract

Objective To describe the prevalence of infertility and infertility treatment seeking among people enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry and identify sociodemographic and clinical correlates of infertility. Design Cross‐sectional. Participants The study population included 2108 women and men (≥18 years of age) enrolled in the SCDIC registry who completed the fertility questionnaire. Results All participants who completed the infertility‐specific questions were included in the analysis (1224 females; 884 males). Of these, 16.9% of males and 23.7% of females reported infertility, in contrast to rates in the general population (12% of males; 11% of females). Only 22.8% of this subgroup had sought a fertility consultation; of these, 41% received infertility testing and 58% received advice, yet only a few received specific treatment: ovulation medication (19.1%), fallopian tubal surgery (4.8%), other female treatment (17.5%), varicocelectomy (8.1%), or other male treatment (10.8%). Increasing age, employment status, and interaction between gender and single marital status are associated with reported infertility. We did not observe differences between groups relative to sickle cell disease (SCD) genotype, a broad category of self‐reported hydroxyurea use any time during life, type of medical insurance, income, or education. Conclusion To our knowledge, this is the first study to examine self‐reported identification of and treatment for infertility among a large sample of people with SCD. These findings suggest that (a) infertility occurs at a higher rate, but fertility care treatment seeking is less frequent than in the general public; and (b) sociodemographic and clinical differences between individuals who report experiencing infertility and those who do not did not emerge in this study.

Comment on: Infertility and treatment‐seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry

“…10 To conclude, we commend Stevenson et al for this hypothesisgenerating work and agree "a fuller understanding of infertility and SCD in the United States may contribute to more patient-centered, robust fertility care for persons with SCD who seek genetic parenthood." 1 With this goal, the infertility rates reported in this study should be interpreted cautiously, as the methodological limitations may misrepresent the problem. Rigorous population-based SCD studies are needed to: (i) determine infertility rates, (ii) inform guidelines for infertility risk and fertility preservation counseling, and (iii) characterize the infrastructure needed to deliver comprehensive, accessible reproductive health care.…”

“…They also did not integrate the published pregnancy data from females in the SCDIC registry into their fertile/infertile classification. 1,8 Second, sample characteristics (77% unmarried; 55% aged 18-29 years) suggest some participants classified as "fertile" may not have attempted to conceive and may not have known if their fertility was impaired (which could underestimate infertility in the sample). For instance, 15%-33% of adolescents and young adults with SCD report they do not desire biological parenthood [9][10][11] and may not attempt it, at least not in early adulthood.…”