Reproductive Health Counseling among Youth with Sickle Cell Disease

Stanek, Charis; Reich, Jenna; Theroux, Charleen I; Creary, Susan E; Quinn, Gwendolyn P.; Nahata, Leena

doi:10.1016/j.jpag.2023.03.002

Cited by 9 publications

(7 citation statements)

References 30 publications

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“…These factors ultimately contribute to reduced reproductive health counseling among this patient population. 16,17 Clinical partnerships between gynecology or adolescent medicine, general pediatricians, and hematology could help bridge the gaps in an individual's provider expertise to optimize patient care.…”

Section: Discussionmentioning

confidence: 99%

“…The study further highlights the critical need for improved patient and provider education, increased research efforts, and implementation of strategies that address the overlooked menstrual health needs in SCD. Potential strategies include: (i) incorporation of standardized questions on menstrual health into the pediatric SCD clinic workflow, (ii) implementation of national clinical guidelines addressing reproductive health among adolescent/young adults devised by a multidisciplinary group of experts and made available to all practitioners who serve this population, 17 and/or (iii) implementation of combined subspecialty clinics whereby patients are evaluated by a hematology provider and a gynecology or adolescent medicine provider within the pediatric SCD center. 47 These approaches could help increase coun- Glaivy Batsuli conceptualized and designed the study, designed data collection instruments, enrolled study participants, analyzed data, and co-wrote the initial manuscript daft.…”

Section: Discussionmentioning

confidence: 99%

“…15,16 Prior studies assessing reproductive health knowledge in adolescent and young adults with SCD have primarily examined topics related to contraception use for pregnancy prevention, pregnancy complication awareness, and medication safety demonstrating variable rates of counseling. 16,17 Evaluation of menstrual health knowledge, particularly among adolescents with new onset menses, that could facilitate discussion of hormonal therapies and other reproductive health topics is not standardized. Additionally, women with SCD report increased frequency of vaso-occlusive pain with the onset of menstruation, though there are conflicting data regarding the latter.…”

Section: Introductionmentioning

confidence: 99%

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Assessment of menstrual health in adolescent and young adults with sickle cell disease

Notice,

Soffer,

Tickle

et al. 2023

Pediatric Blood & Cancer

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BackgroundSickle cell disease (SCD) is associated with hypercoagulability, but adults with SCD also have an increased incidence of bleeding including heavy menstrual bleeding (HMB). HMB is common among adolescent females, but the impact of HMB in pediatric SCD is unclear. The objectives of this study were to examine menstrual health status, knowledge, and quality of life (QOL).MethodsWe performed a single‐institutional multi‐clinic cross‐sectional study comprised of a five‐part survey in pediatric participants with SCD. The survey included the validated Menstrual Bleeding Questionnaire (MBQ) and Self‐administered Bleeding Assessment Tool (Self‐BAT).ResultsForty‐eight participants with a median age of 16 years (range: 12–21 years) completed the study. The mean age at onset of menarche was 13 ± 1.3 years. On the MBQ, 29% reported heavy/very heavy menstrual flow, 61% reported moderate or severe dysmenorrhea, and 96% had menses lasting less than 1 week. The Self‐BAT revealed that 42% of participants reported a history of HMB. Participants with severe dysmenorrhea or HMB had higher MBQ scores, corresponding to worse QOL. Despite this, less than 20% of participants had attempted any hormonal therapy for menstrual regulation. The odds of hormonal therapy utilization were comparable among participants on hydroxyurea versus not on hydroxyurea (odds ratio 1.58, 95% confidence interval [CI]: 0.33–7.56).ConclusionsThe prevalence of HMB and dysmenorrhea is high among adolescents and young women with SCD. Strategies that incorporate menstrual health assessment into routine medical care in this population would help address this important area of pediatric health.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Assessment of menstrual health in adolescent and young adults with sickle cell disease

Notice,

Soffer,

Tickle

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%

“…Twentyfour percent (N = 12) had a history of either pregnancy or impregnating a partner, including three women (ages 18, 21, and 26) who were pregnant at their initial clinic visit. Among respondents with a history of pregnancy in oneself or a partner, seven had a biological child, and the median parental age at first birth was 21 years (IQR 16,22).…”

Section: Respondent Characteristicsmentioning

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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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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Reproductive Health Counseling among Youth with Sickle Cell Disease

Cited by 9 publications

References 30 publications

Assessment of menstrual health in adolescent and young adults with sickle cell disease

Assessment of menstrual health in adolescent and young adults with sickle cell disease

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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