Expecting more: the case for incorporating fertility services into comprehensive sickle cell disease care

Pecker, Lydia H.; Oteng‐Ntim, Eugene; Nero, Alecia; Lanzkron, Sophie; Christianson, Mindy S.; Woolford, Teonna; Meacham, Lillian R.; Mishkin, Adrienne D.

doi:10.1016/s2352-3026(22)00353-2

Cited by 18 publications

(27 citation statements)

References 65 publications

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“…33 In most instances, private health insurance covers infertility evaluation, yet few states cover infertility diagnostic services (GA, HI, MA, MI, MN, NH, NM, and NY) in at least one of their Medicaid plans (many of which limit coverage of infertility testing). 34,35 Most likely, lack of coverage for infertility testing and treatment is a major barrier to patients with SCD; our findings have important policy implications for Medicaid plans nationally. It is important to note that only 26.5% of our participants had private insurance coverage; the majority (63.2%) reported Medicaid/Medicare as their insurance provider.…”

Section: Discussionmentioning

confidence: 85%

“…The American Society for Reproductive Medicine advocates for systematic and cost‐effective infertility assessment for females 32 and accurate identification of male infertility and associated health conditions 33 . In most instances, private health insurance covers infertility evaluation, yet few states cover infertility diagnostic services (GA, HI, MA, MI, MN, NH, NM, and NY) in at least one of their Medicaid plans (many of which limit coverage of infertility testing) 34,35 . Most likely, lack of coverage for infertility testing and treatment is a major barrier to patients with SCD; our findings have important policy implications for Medicaid plans nationally.…”

Section: Discussionmentioning

confidence: 99%

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

Stevenson

Tanabe

Knisely

et al. 2023

Pediatric Blood & Cancer

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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.

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Section: Discussionmentioning

confidence: 85%

Section: Discussionmentioning

confidence: 99%

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

Stevenson

Tanabe

Knisely

et al. 2023

Pediatric Blood & Cancer

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“…The overrepresentation of young men with priapism in this sample raises the possibility of selection bias, but also that priapism is a protective factor for successfully transitioning to adult care. Delivering sex-specific education and care to boys and men with SCD is critical, and these long-standing issues are now well over 50-year old [30]; a recent study identifies ongoing needs and challenges integrating sexual and reproductive healthcare into pediatric SCD care [31,32]. Other nuances in providing this care need consideration.…”

Section: Discussionmentioning

confidence: 99%

Family planning needs of young adults with sickle cell disease

Linton

Williams

Early

et al. 2023

eJHaem

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Sexual and reproductive healthcare standards for adolescents and young adults with sickle cell disease (SCD) are not established. A total of 50 young adults entering adult SCD care completed a Family Planning Survey assessing sexual and reproductive health needs from March 2019 to July 2020. Clinical data were abstracted from respondents’ electronic medical records. Linear and logistic regression was applied to explore associations between clinical characteristics and survey results. Few respondents (8%) wished to be pregnant in the coming year, and 46% answered yes to at least one of four needs assessment questions. Those who were not employed full time were more likely to endorse needing help with getting sickle cell trait testing for a partner (ORadj = 9.59, p‐value = 0.05). Contraceptive use was associated with having an obstetrician–gynecologist (OR = 6.8, p‐value = 0.01). Young adults with SCD entering adult care have diverse reproductive health needs, highlighting opportunities to provide multidisciplinary, SCD‐specific reproductive healthcare.

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“…There are numerous reproductive healthcare considerations specific to sickle cell disease (SCD), [1][2][3] and the potential impact of SCD and hydroxyurea on fertility is particularly salient. 4,5 The majority of individuals with SCD in high-resource settings are surviving into adulthood, [6][7][8] hydroxyurea use is expanding worldwide, 9 most adolescents with SCD desire future biological parenthood, 5,10 and fertility testing and preservation methods are available but not currently integrated into standard clinical care. 11 Recent research in small cohorts show adult males with SCD who are treated and untreated with hydroxyurea have abnormal semen parameters, raising the concern that SCD and/or hydroxyurea may impact fertility.…”

Section: Introductionmentioning

confidence: 99%

Experiences and outcomes of fertility testing in male adolescents with sickle cell disease

Creary,

Liles,

Colton

et al. 2024

Pediatric Blood & Cancer

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Adult males with sickle cell disease (SCD) may have abnormal semen parameters, raising the concern that SCD and/or treatments may impact fertility. Yet, studies that include adolescents are lacking. To determine if fertility testing is feasible in male adolescents with SCD, and to explore their experiences and outcomes of fertility testing, 33 adolescents who completed a web‐based SCD reproductive health education program were offered a free semen analysis. Five (15%) obtained testing and each had abnormalities. Barriers to testing included lack of time and transportation and discomfort. Findings highlight the need for larger, longitudinal studies using innovative testing approaches.

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Expecting more: the case for incorporating fertility services into comprehensive sickle cell disease care

Cited by 18 publications

References 65 publications

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

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

Family planning needs of young adults with sickle cell disease

Experiences and outcomes of fertility testing in male adolescents with sickle cell disease

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