Acceptable, hopeful, and useful: development and mixed-method evaluation of an educational tool about reproductive options for people with sickle cell disease or trait

Early, Macy L.; Strodel, Rachel J.; Lake, Isabel V.; Ruddy, Jake A; Saba, James A.; Singh, Siddharth; Lanzkron, Sophie; Mack, Jennifer W.; Meier, Emily Riehm; Christianson, Mindy S.; Pecker, Lydia H.

doi:10.1007/s10815-021-02358-z

Cited by 12 publications

(14 citation statements)

References 30 publications

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“…This could be due to higher rates of unplanned pregnancies in adolescents with SCD, which highlights the importance of incorporating reproductive health education and genetic counseling into comprehensive care for all pre-pubertal children living with SCD. [46][47][48][49] Subfertility and premature ovarian failure in women with SCD could also account for lower pregnancy rates with older age; thus, studies on fertility preservation and non-gonadotoxic therapies for SCD should remain a high research priority. 10,46,50 Lastly, cumulative end-organ damage and decreased median survival may prematurely truncate the reproductive lifespan of women living with SCD.…”

Section: Resultsmentioning

confidence: 99%

“…Although maternal age at first delivery has trended upwards in the general US population over time, 45 we found that Black women with SCD were younger than those without SCD at their first delivery. This could be due to higher rates of unplanned pregnancies in adolescents with SCD, which highlights the importance of incorporating reproductive health education and genetic counseling into comprehensive care for all pre‐pubertal children living with SCD 46–49 . Subfertility and premature ovarian failure in women with SCD could also account for lower pregnancy rates with older age; thus, studies on fertility preservation and non‐gonadotoxic therapies for SCD should remain a high research priority 10,46,50 .…”

Section: Discussionmentioning

confidence: 99%

“…Lastly, we included the Distressed Communities Index (DCI), which compares the economic well-being of communities across the US using a weighted average of seven populations-based metrics derived from zip code level data, then normalizes that value into a single summary statistic (or DCI score) ranging from 0 to 100. 42 We assigned each woman's DCI score based on her residential zip code at time of delivery as reported in the PDD or EDU, then categorized them into 1 of 5 predefined economic groups: prosperous (0-20), comfortable (21)(22)(23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40), mid-tier (41)(42)(43)(44)(45)(46)(47)(48)(49)(50)(51)(52)(53)(54)(55)(56)(57)(58)(59)(60), at-risk (61-80), and distressed (81-100).…”

Section: Covariate Descriptionsmentioning

confidence: 99%

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Pregnancy outcomes in women with sickle cell disease in California

et al. 2023

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Adverse pregnancy outcomes occur frequently in women with sickle cell disease (SCD) across the globe. In the United States, Black women experience disproportionately worse maternal health outcomes than all other racial groups. To better understand how social determinants of health impact SCD maternal morbidity, we used California's Department of Health Care Access and Information data (1991–2019) to estimate the cumulative incidence of pregnancy outcomes in Black women with and without SCD—adjusted for age, insurance status, and Distressed Community Index (DCI) scores. Black pregnant women with SCD were more likely to deliver at a younger age, use government insurance, and live in at‐risk or distressed neighborhoods, compared to those without SCD. They also experienced higher stillbirths (26.8, 95% confidence interval [CI]: 17.5–36.1 vs. 12.4 [CI: 12.1–12.7], per 1000 births) and inpatient maternal mortality (344.5 [CI: 337.6–682.2] vs. 6.1 [CI: 2.3–8.4], per 100 000 live births). Multivariate logistic regression models showed Black pregnant women with SCD had significantly higher odds ratios (OR) for sepsis (OR 14.89, CI: 10.81, 20.52), venous thromboembolism (OR 13.60, CI: 9.16, 20.20), and postpartum hemorrhage (OR 2.25, CI 1.79–2.82), with peak onset in the second trimester, third trimester, and six weeks postpartum, respectively. Despite adjusting for sociodemographic factors, Black women with SCD still experienced significantly worse pregnancy outcomes than those without SCD. We need additional studies to determine if early introduction to reproductive health education, continuation of SCD‐modifying therapies during pregnancy, and increasing access to multidisciplinary perinatal care can reduce morbidity in pregnant women with SCD.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Covariate Descriptionsmentioning

confidence: 99%

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Pregnancy outcomes in women with sickle cell disease in California

et al. 2023

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“…[8][9][10] Genetic coun sel ing is offered to address SCD inher i tance. 11 In some countries this test ing and coun sel ing is a standard premarital requirement. 10 Preconception changes to SCD treat ment reg i mens are chal leng ing (Figure 2).…”

Section: Learning Objec Tivesmentioning

confidence: 99%

“…People with the genetic poten tial to have a child with SCD need accu rate infor ma tion about repro duc tive options (Figure 1). 10,11 These include unas sisted preg nancy with or without fetal diag nos tic test ing and the choice of elec tive ter mi na tion and in vitro fer til iza tion (IVF) with pre im plan ta tion genetic test ing for mono ge netic dis or ders (PGT-M). IVF+PGT-M tar gets monogenic dis or ders and must be dis tin guished from PGT to screen embryos for aneu ploidy (PGT-A).…”

Section: Clinical Case (Con Tin Ued)mentioning

confidence: 99%

No crystal stair: supporting fertility care and the pursuit of pregnancy in women with sickle cell disease

2022

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Growing recognition that the ovary is an end organ in sickle cell disease (SCD), advances in SCD treatment and cure, and innovations in assisted reproductive technologies invite progressive challenges in fertility care for women with SCD. The reproductive life span of women with SCD may be reduced because ovarian reserve declines more rapidly in people with SCD compared to unaffected people. Some young women have diminished ovarian reserve, a risk factor for infertility. Referrals for fertility preservation may be offered and anticipatory guidance about when to seek infertility care provided. For a subset of people with SCD, this information is also applicable when pursuing in vitro fertilization with preimplantation genetic testing to avoid implantation of an embryo with SCD. Here we explore the dimensions of SCD-related fertility care illustrated by the case of a 28-year-old woman with hemoglobin SS disease who initially presented for a hematology consultation for preconception counseling. This case highlights the complexity of preconception SCD management and care and the need to partner with patients to help align pregnancy hopes with SCD treatment and the many associated uncertainties.

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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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Acceptable, hopeful, and useful: development and mixed-method evaluation of an educational tool about reproductive options for people with sickle cell disease or trait

Cited by 12 publications

References 30 publications

Pregnancy outcomes in women with sickle cell disease in California

Pregnancy outcomes in women with sickle cell disease in California

No crystal stair: supporting fertility care and the pursuit of pregnancy in women with sickle cell disease

Family planning needs of young adults with sickle cell disease

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