Go the Distance

Pecker, Lydia H.; Kuo, Kevin H.M.

doi:10.1016/j.hoc.2022.07.010

Cited by 13 publications

(13 citation statements)

References 91 publications

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“…Fertility planning for people with SCD is very recently gaining attention, and comprehensive recommendations for those seeking to build their families are available. 42 All women with SCD would benefit from a consultation with a reproductive endocrinologist to discuss fertility preservation and surrogacy options. 23,24 Our study has several strengths, including a robust sample size sampled via a consortium with eight geographically diverse settings in the United States.…”

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: 99%

“…Fertility planning for people with SCD is very recently gaining attention, and comprehensive recommendations for those seeking to build their families are available 42 . All women with SCD would benefit from a consultation with a reproductive endocrinologist to discuss fertility preservation and surrogacy options 23,24 …”

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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“…Treatments and cures may also raise reproductive health concerns, including infertility and teratogenicity [12,14]. AYA with SCD in pediatric care want-and lack-reproductive health knowledge and care [15,16].…”

Section: F I G U R Ementioning

confidence: 99%

“…Moreover, pregnancy is high risk [9, 10], and, in some healthcare systems, pregnant people in pediatric care are automatically transitioned to adult care [11]. SCD treatments might positively affect reproductive health by reducing priapism, decreasing painful crises with menstruation, improving overall organ function to improve pregnancy outcomes, or by enhancing overall well‐being, reducing social isolation and thus enabling the development of supportive relationships [12, 13]. Treatments and cures may also raise reproductive health concerns, including infertility and teratogenicity [12, 14].…”

Section: Introductionmentioning

confidence: 99%

“…SCD treatments might positively affect reproductive health by reducing priapism, decreasing painful crises with menstruation, improving overall organ function to improve pregnancy outcomes, or by enhancing overall well‐being, reducing social isolation and thus enabling the development of supportive relationships [12, 13]. Treatments and cures may also raise reproductive health concerns, including infertility and teratogenicity [12, 14]. AYA with SCD in pediatric care want—and lack—reproductive health knowledge and care [15, 16].…”

Section: Introductionmentioning

confidence: 99%

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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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Sexually transmitted infection testing and diagnosis in adolescents and young adults with sickle cell disease

Walden,

Stanek,

Ebersole

et al. 2024

Pediatric Blood & Cancer

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BackgroundSexually transmitted infections (STIs) are common and disproportionately affect Black adolescents and young adults (AYAs). Less is known about STIs among Black AYAs with chronic conditions, such as sickle cell disease (AYAs‐SCD). This study compared STI testing and diagnosis between AYAs‐SCD and their peers, overall and among STI‐related encounters.ProcedureThis retrospective, cross‐sectional study used diagnosis and billing codes in the Pediatric Health Information System (PHIS) to identify inpatient and emergency department encounters from January 1, 2022 to May 31, 2023 among all AYAs 15–24 years and those with STI‐related diagnoses (e.g., “cystitis”). STI testing and diagnosis rates were compared between AYAs‐SCD, non‐Black AYAs, and Black AYAs, controlling for age, sex, and encounter setting.ResultsWe identified 3602 AYAs‐SCD, 177,783 Black AYAs, and 534,495 non‐Black AYAs. AYAs‐SCD were less likely to be tested for STIs than non‐Black AYAs (odds ratio [OR] = 0.26; adj. p < .001) and Black AYAs (OR = 0.53; adj. p < .001). When tested, AYAs‐SCD were more likely to be diagnosed with an STI than non‐Black AYAs (OR = 2.39; adj. p = .006) and as likely as Black AYAs (OR = 0.67; adj. p = .15). Among STI‐related encounters, AYAs‐SCD were less likely to be tested than non‐Black AYAs (OR = 0.18; adj. p < .001) and Black AYAs (OR = 0.44; adj. p < .001). No significant differences in STI diagnoses were found in this subset between AYAs‐SCD and non‐Black AYAs (OR = 0.32; adj. p = .28) or Black AYAs (OR = 1.07; adj. p = .99).ConclusionsSTI care gaps may disproportionately affect AYAs‐SCD. STIs should be considered when evaluating symptomatic AYAs‐SCD in acute settings. More research is needed to further contextualize STI care for AYAs‐SCD.

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Go the Distance

Cited by 13 publications

References 91 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

Sexually transmitted infection testing and diagnosis in adolescents and young adults with sickle cell disease

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