https://orcid.org/0000-0002-6684-4498
Figures
Abstract
Introduction
Sickle cell disease (SCD) is an autosomal recessive blood disorder that impacts about 100,000 Americans. With increasing life expectancy and more people with SCD reaching reproductive age, there is growing evidence that SCD and some of its therapies decrease fertility. While partner testing and assisted reproductive technology (ART) can enable people with SCD to choose if and how to have biological children, their use remains limited. In this study, we aimed to explore how people with SCD understand the potential fertility implications of SCD and their perceptions of partner testing and ART.
Methods
We recruited adults with SCD ages 18–35 years old who self-identified as being interested in having a biological child in the future and conducted semi-structured individual interviews to discuss previous experiences and perceptions regarding family building planning. Interviews were transcribed and thematically analyzed using inductive coding and the social ecological model.
Results
We completed 11 interviews with 9 women and 2 men (mean age 30.6 years old, 100% Black or African American). We identified five themes that reached saturation: 1) Providers gave limited support for family building planning; 2) Female participants had a lack of understanding what pregnancy would be like with SCD; 3) Participants felt their partners did not equally share the burden of family building planning; 4) Potential financial burden prevented participants from seriously considering ART; and 5) Participants wanted earlier and frequent discussions with their providers about family building options. Participants identified factors that impacted their family building plans, which fit across the social ecological model.
Discussion
Adults with SCD desire further education on the impact of SCD and its treatments on fertility as well as support in their reproductive planning through early, frequent conversations about family building options. Additionally, financial barriers to ART such as insurance coverage must be addressed for adults with SCD.
Citation: Gordon RD, Dyson K, Quaye N, Nahata L, Creary SE, Cronin RM (2026) Experiences of family building counseling and perceptions of reproductive technology among adults with sickle cell disease. PLoS One 21(8): e0355020. https://doi.org/10.1371/journal.pone.0355020
Editor: Rehab Al-Ansari, King Fahd Military Medical Complex, SAUDI ARABIA
Received: November 19, 2025; Accepted: July 15, 2026; Published: August 24, 2026
Copyright: © 2026 Gordon et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: Given the rare nature of the described disease (an estimated 100,000 adults with sickle cell disease in the US) and the unique identifiers discussed in the interviews (e.g., family history, reproductive history), it is not appropriate to share data in publicly available repository due to concern for potentially identifying information. The institutional deidentified data underlying this article are available from the corresponding author on reasonable request and institutional approval. Interested parties will be required to complete an institutional Data Use Agreement, and data will be made available via Secure Data transfer after institutional approval is secured. Data requests can be sent to the Ohio State University Enterprise for Research, Innovation, and Knowledge at erik@osu.edu.
Funding: Data collection via REDCap was supported by the National Center for Advancing Translational Sciences, Grant UM1TR004548. The research reported in this publication was supported in part by The Ohio State University (OSU) Center for Health Outcomes in Medicine Scholarship and Service (HOMES). The content is solely the responsibility of the authors and does not necessarily represent the official views of OSU or HOMES. There was no additional external funding received for this study.
Competing interests: The authors have declared that no competing interests exist.
Introduction
Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy affecting 100,000 individuals in the United States that leads to chronic pain and end-organ damage, including retinopathy, nephropathy, splenic infarction, and pulmonary hypertension [1]. With improving treatment options, the average life expectancy at birth has increased from less than 20 years in the 1970s [2] to 54 years in 2019 [3]. Therefore, more people with SCD are reaching reproductive age [4] and will need to consider the impact SCD has on their reproductive health. For instance, people with SCD have a 50% chance of having a child with SCD if their partner has sickle cell trait (SCT), which is present in an estimated 8% of African Americans [1]. Despite universal newborn screening [5] and recommendations for counseling, [6] knowledge of individual SCT status often remains limited [7]. Thus, testing partners of people with SCD for abnormal hemoglobin traits that could lead to SCD is critical to understand the couple’s risk of having a child with SCD and allow them to make informed decisions in regards to family building and the planning of if, when, and how to have children [8].
Beyond genetic transmission, SCD has additional reproductive implications [9]. There is growing concern that SCD and some of its treatments may lead to decreased fertility, including new curative therapies [10]. Hypoxic injury from SCD may lead to premature gonadal failure; women with SCD have higher rates of primary ovarian insufficiency [11] and men with SCD have been shown to have abnormal semen parameters [12]. Hydroxyurea, a common treatment for SCD, has been shown to decrease sperm counts [13], but it is unclear if these effects are transient [14]. Conditioning regimens for hematopoietic stem cell transplantation and gene therapy can also significantly impact fertility [15,16]. Given that adolescents and young adults with SCD indicate that biological parenthood is important to them [17], increased consideration of fertility preservation and augmentation is necessary. However, only 4% of youth with SCD have been counseled on potential fertility impact of SCD [18] and in one survey, less than 50% of adults with SCD were able to identify infertility risk factors [19]. Assisted reproductive technologies (ART) have the potential to address both genetic transmittance and infertility impacts of SCD [20]. In vitro fertilization (IVF) can successfully be used in people with SCD [21], and use of IVF with preimplantation genetic testing (PGT) can ensure the resultant child does not have SCD if their partner has an abnormal hemoglobin trait [22], if desired by the family.
While it is known that most parents of children with SCD would consider using PGT for future pregnancies [23], the perceptions and opinions of adults with SCD regarding reproductive technology such as partner testing and IVF/PGT are relatively unknown. Previous work has focused mostly on knowledge of fertility and ART [18,19], but not patient-identified needs in family building counseling or intentions regarding ART if it were available. Experiences of family building decision making are multi-faceted and shaped by interpersonal and community factors across the social ecological model [24] and require in-depth understanding. In this study, we aimed to understand previous experiences with fertility counseling, perspectives on partner testing, and attitudes towards ART amongst adults with SCD.
Methods
The study was approved by the Ohio State University (OSU) Institutional Review Board and all participants provided written informed consent for interview video recording (IRB ID 2023B0122). The consolidated criteria for reporting qualitative research (COREQ) [25] guided the reporting of this qualitative study (S1 File).
Setting and recruitment
The study was conducted at an academic, tertiary care Midwestern medical center with a sickle cell center. A National Alliance of Sickle Cell Centers affiliate [26], the included center treats an estimated 400 adults with SCD and has obstetric providers, including specialists in Reproductive Endocrinology and Infertility (REI), within the medical center. Participants were recruited from clinic in a convenience sampling approach from February 2024 to September 2024. Patients were eligible if they had a diagnosis of SCD (any genotype) and were between 18–35 years old. Potentially eligible patients were identified from clinic schedules; these patients were then asked, “Are you considering or planning on having biological children in the future?” If the patient said yes or was unsure, they were considered eligible for participation. Exclusion criteria included inability to speak conversationally in English and unwilling to discuss fertility planning. Participants who completed the interview were compensated for their time with a $50 gift card.
Data collection
Demographics and medical history were collected in person and securely managed using REDCap electronic data capture via the OSU [27,28]. Participants completed one-on-one video interviews that were recorded with one of two study members- a female physician trained in Internal Medicine-Pediatrics (RDG) or a female medical student (KD). They both had previous experience with qualitative research (RDG completed didactic coursework in qualitative analysis and had completed qualitative studies regarding postpartum primary care; KD conducted qualitative analysis for her Master of Public Health [MPH] thesis and was under supervision of RDG) and did not have any therapeutic relationship with the participants. Interviewers reported no existing biases and were interested in increasing knowledge regarding and access to ART for those who are interested. Participants were informed that the interviewers were researchers learning about the experiences and opinions of adults with SCD about partner testing for sickle cell trait and reproductive planning. The interviewers used a semi-structured interview guide that included questions regarding their understanding of the impact of SCD on fertility, previous counseling on reproductive options, experience with partner testing, understanding of IVF, and perceptions of PGT which had been pilot tested with two individuals (S2 File). Since it was anticipated that not all participants would have prior knowledge of IVF and PGT, brief written descriptions of these interventions were provided to all participants during the interview. Participants were recruited until thematic saturation was reached. Interviews were conducted via video at the participant’s home; non-participants were occasionally present at the discretion of the participant (e.g., children, sibling) but were not directly asked questions or engaged in the interview. Video interviews were recorded, which participants explicitly consented to. Repeat interviews, field notes, transcript returning, and participant checking were not used.
Data analysis
Analysis was led by grounded theory and narrative inquiry [29]. Interview audio recordings were transcribed and analyzed using NVivo software [30]. Two study members (RG, KD) with previous coding experience formed the coding team. Both coders first conducted line-by-line coding on two transcripts independently, then developed an initial codebook based on the codes as well as the primary research questions. They applied the shared codebook to one transcript, then compared and discussed any necessary changes to the codebook until consensus was reached. Both coders independently coded the remaining transcripts with the codebook. Codes were later grouped by applied thematic analysis (Fig 1). Data saturation was considered reached when there were no new themes identified regarding participants’ perceptions of family building planning conversations with providers; data saturation was reached by the final interview.
Transcripts were reviewed for participant-identified factors impacting their reproductive intentions which were mapped to the social ecological model. Initially described over 25 years ago to direct development of multi-level health promotion interventions [31], the social ecological model details determinants of health behaviors across five domains: individual, interpersonal, organizational, community, and public policy. Previous literature has used the social ecological model to understand influencing factors on reproductive intentions [24,32] to describe the features that lead to stratified reproduction, or socio-economic imbalances in ability to have and care for children [33]. Given the significant racial and socio-economic disparities in ART access [34], the social ecological model serves as an optimal framework to understand the overlapping dynamics that lead to individual decisions on family building.
Results
A total of 22 female patients and 11 male patients were approached to participate. While 21 patients (15 female, 6 male) consented to participate, in total, 11 completed an interview. Of the ten participants who consented but did not complete an interview, five were not reachable to schedule an interview, and five scheduled an interview but did not show up for the interview; none of the participants dropped out. Participant demographics and disease characteristics are included in Table 1; there were nine women and two men, aged 26–34 years. All participants identified as straight/heterosexual, and three participants (all women) had biological children. Interviews lasted an average of 34 minutes (SD 12 minutes). We identified five themes through our interviews: 1) Providers gave limited support for family building planning; 2) Female participants had a lack of understanding what pregnancy would be like with SCD; 3) Participants felt their partners did not equally share the burden of family building planning; 4) Potential financial burden prevented participants from seriously considering ART; and 5) Participants wanted earlier and frequent discussions with their providers about family building options (Table 2).
Providers gave limited support for family building planning
While all participants were confident in the inheritance pattern of SCD, very few participants expressed understanding of the impact that SCD or SCD treatments may have on fertility. Many participants referenced providers drawing family trees or charts to explain the importance of partner testing, but did not recall discussions regarding fertility and family building. Participants who brought up concerns about fertility discussed their concern of infertility as a side effect of a medication or due to chronic pain, rather than as a complication of SCD directly. This lack of understanding may have reflected their previous education regarding reproductive topics.
Some participants assumed their fertility would not be affected because of their provider’s strong focus on preventing pregnancy. As one participant stated, “I know that it [hydroxyurea] is something I couldn’t be on while pregnant…. So I don’t have any worries about it affecting me getting pregnant. I’m more worried about, like if I do get pregnant, how would I manage my crisis.” Participants who discussed family building planning with their providers recalled their providers recommending against pregnancy and not providing alternative options if they expressed desire to conceive. This led some participants to avoid discussions regarding family building with their providers; several participants discussed having difficulty getting pregnant or suffering from repeated miscarriages but did not discuss this with their provider.
Female participants had a lack of understanding what pregnancy would be like with SCD
Females expressed their concern with their lack of knowledge on what pregnancy may be like with SCD and the impact it would have on their health. Participants differed on whether they thought SCD would have an impact on pregnancy outcome for themselves or their child, and oftentimes conflated their SCD symptom burden with the likelihood of poor pregnancy outcomes; one participant stated it is important to prevent pain crises during pregnancy because “if they’re not in pain, that would help lead to no birth defects or… possibly save them from having a miscarriage.” Many had unanswered questions regarding the impact pregnancy would have on their SCD symptoms, particularly pain crises and anemia, as well as how they could optimize their health for pregnancy. Several women felt that besides their hematologist, it would also be helpful to hear directly from a person with SCD who had given birth to understand the experience of pregnancy with SCD.
Participants felt their partners did not equally share the burden of family building planning
All participants stated they would ask any future partner their SCT status, and most participants reported that they had asked at least one of their partners previously (Table 1). Participants felt comfortable asking their providers for resources to get their partner tested. The timing of asking their partner about their SCT status was variable, but all participants described leading the conversation; some asked soon after beginning to date to decide if they should continue the relationship, some waited until they were in a serious relationship and beginning to consider having children, and some participants did not ask their partner’s SCT status until they were pregnant. This may have reflected the large variety of responses in whether their partner’s SCT status would change their family building plans. Several participants said they would proceed with having a child together but wanted to be prepared for the possibility of having a child with SCD; one participant stated, “I don’t feel like people with sickle cell don’t deserve to be here”. Other participants said they would pick a different partner or would not have biological children if their partner had SCT; they often cited their own or family members’ experiences with SCD and not wanting their child to have to experience that. One participant stated, “I know the pain that I go through, and I wouldn’t wish it on my worst enemy, much less my child.”
Of participants who had previously asked a partner about their SCT status, most felt good about these conversations. Many reflected that their partners had helped them through crises and so were aware of the potential significant impact of SCD on a person’s health. Some participants reported that their partners who had a perceived decreased risk (such as no family history or of a different race/ethnicity) were sometimes more resistant to testing. Participants also occasionally reported that their partners were sometimes resistant to getting testing done if they had already conceived; one participant recalled asking her partner refusing to get tested after she became pregnant because “we are just going to deal with it no matter what and love him regardless.”
Potential financial burden prevented participants from serious considering ART
All participants were aware of IVF as a treatment for infertility; some referenced social contacts or online influencers who had undergone IVF as their primary reference. Only one participant was aware of IVF use for people with SCD, and they stated they had specifically asked their provider about this as an option. All participants were aware of cost as a barrier, which precluded them from considering IVF as a viable option. Other concerns regarding IVF included the uncertainty of success and the unique potential impacts of IVF medications on people SCD. One participant stated, “I just don’t know if it’s something that, like, would harm my body more than it would do good.”
In contrast, few participants had heard of PGT prior to the interview. There was variable interest in PGT; some participants expressed concerns about eugenic implications of PGT, calling it a “slippery slope”, while others liked that it could allow them to have a biological child without SCD.
Participants wanted earlier and frequent discussions with their providers about family building options
Participants identified wanting to have earlier and more frequent conversations about family building, with a focus on their individual goals, setting realistic expectations, and how to optimize their chances for a healthy pregnancy. Participants identified factors that would impact their family building intentions and interest in ART, which fit across the social ecological model (Fig 2), and while their provider’s recommendations did play an important role in their decision, several participants wanted to discuss family building even if their provider recommended against pregnancy. Participants largely wanted resources from their hematologist, citing longitudinal relationships and expertise in SCD as important to their discussion regarding pregnancy planning. They also reported unclear division of responsibilities within large healthcare teams, such as not understanding the role of primary care or obstetrics versus hematology and often using their hematologist as their first healthcare contact. Women who had been pregnant referenced this as one of the reasons they desired more involvement from their hematologist during pregnancy.
Participants also reported the need for resources for their partners and partners’ families to educate them regarding the potential impacts of SCD and how to get tested for SCT, both to help their partner feel more involved as well as to decrease the burden on themselves to unilaterally direct these conversations. One participant stated, “It would be nice if he had somebody that he could talk to or felt comfortable with, like, ‘Oh, yeah... I know about the treatments,’ you know. Sometimes I can’t explain stuff to him. I don’t know how.”
Discussion
This study is one of the first to detail the previous experiences and perceptions of adults with SCD regarding family building intention and reproductive technology. Our study shows that not only is reproductive health and fertility counseling inadequate, in alignment with previous research [18,35], but that adults with SCD feel unsupported and not equipped to make family building decisions.
Several factors were identified that impacted participants’ family building decision making and intention to utilize reproductive technology if available (Fig 2). Providers’ guidance and individual’s understanding of their fertility, treatment effects, and disease burden were all factors in reproductive technology intention, making the guidance of healthcare providers central to allowing individuals to make the most well-informed decision based on their health status. Notably, participants differed in their value assessment of having biological children versus prevention of SCD for potential children; it is critical providers establish their patient’s priorities to tailor their counseling.
Advancements in detection and treatment have transformed the life courses of families affected by SCD; while SCD used to be considered a childhood illness due to early mortality, now 95% of people with SCD live to adulthood [1]. Subsequently, the number of people with SCD making decisions regarding family building has outpaced the current understanding of the impact of SCD on reproductive ability and pregnancy risk mitigation for women with SCD. With increasing quality of life and further increases in life expectancy anticipated with the development of curative therapies [36], it is the medical community’s responsibility to ensure meeting the evolving needs and priorities of adults with SCD. While the American Society of Hematology has updated transition summaries to prompt consideration of partner genetic testing [37], most patient education regarding ART is well above the national average reading level [38], limiting the ability of clinicians to fully discuss all options with patients with SCD. Further research is necessary to optimize the health of women with SCD for pregnancy, inform conversations with adults with SCD regarding the risks and benefits of ART, as well as understand the fertility and fetal risks of SCD therapies. Research regarding patient-identified needs in family building planning guidelines is ongoing [39], and patient-centered recommendations could serve as a critical bridge between developing evidence and personalized counseling, by guiding providers on how to lead individualized conversations with patients about their family building risks and options.
Notably, although few participants were initially familiar with the use of ART for people with SCD, several noted that they would be interested in pursuing if it was accessible. However, several participants expressed concerns regarding unknown risks specific to SCD and fertility preservation; as data emerges regarding the risk of SCD complications associated with the process of fertility preservation among women with SCD [21], providers must inform patients of both positive and negative implications of ART. All participants were aware of cost as a barrier, which many cited as a reason they had not seriously considered it. Insurance coverage of IVF and PGT remains a critical barrier to reproductive technology access that will need to be mitigated to allow for wider utilization. Economic analysis shows that IVF with PGT would be cost effective compared to lifetime standard of care treatment for SCD with an incremental savings of over $130,000 [40]. However, use of reproductive technology is low in SCD compared to the general population [41], potentially because of knowledge gaps about this technology for SCD, racial disparities in ART access [42], and the high proportion of adults with SCD insured by Medicaid [41]. Previous work has shown that awareness of reproductive technology can be increased through educational materials [18,35], but other barriers to ART access, including insurance coverage, cost, and fertility subspecialty access, persist. Advocacy for insurance coverage of ART is essential to promoting the ability of adults with SCD to make individualized decisions regarding their family building.
Limitations of our study include that all participants were patients at the same center, so their knowledge and experiences may not be applicable to other centers. There was low baseline knowledge among our participants regarding ART, specifically PGT. While participants were provided some information, this may not accurately reflect an informed decision or their perspectives may change after further reflection. There may have been selection bias with the loss to follow up, given that 10 patients were unable to be contacted to schedule or complete interview. While we had a small sample size which may have limited our ability to identify all themes, we did reach saturation for our identified themes; data saturation was reviewed during analysis regarding participants’ perceptions of family building planning conversations with providers and was met prior to the final interview. However, it is possible that we did not adequately capture all relevant minor themes. Most notably, only 2 male participants completed the interview despite 6 men consenting to participate and 11 men being approached. As participants were lost to follow up and did not formally withdraw, it is not known if there are any gender-specific reasons for the differential completion rates by gender. While it is likely we did not completely assess the gender-specific experiences or perceptions of men with SCD, the male participants did fit within the four identified themes relevant to both sexes and expressed similar perceptions regarding their experiences of family building planning, leading us to believe that several components of family building planning are not sex-specific but rather relevant to both men and women. Further work is necessary to further differentiate experiences of men and women with SCD regarding family building planning, as well as to elicit themes regarding male-specific experiences.
Conclusion
This study illustrates critical gaps in family building knowledge and counseling for adults with SCD. Participants desired earlier and frequent discussions with their providers about what family building options exist for them and potential outcomes. Further work is needed to fill the gaps identified by patients regarding education about the experience of pregnancy with SCD and resources for partners regarding the importance of SCT testing. Continued efforts to remove barriers to reproductive technology, including access to specialists and insurance coverage, is also necessary to enable access to patients interested in ART. As the life expectancy and quality of life for people with SCD increases, so does the need for critical consideration of their evolving needs, including information for family building.
Acknowledgments
The authors would like to thank Mireille Bitangacha, affiliated with the authors’ organization, for their assistance with this project.
References
- 1.
Prevention CfDCa. Data and statistics on sickle cell disease. 2024. https://www.cdc.gov/sickle-cell/data/index.html
- 2. Lanzkron S, Carroll CP, Haywood C Jr. Mortality rates and age at death from sickle cell disease: U.S., 1979-2005. Public Health Rep. 2013;128(2):110–6.
- 3. Lubeck D, Agodoa I, Bhakta N, Danese M, Pappu K, Howard R, et al. Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease. JAMA Netw Open. 2019;2(11):e1915374. pmid:31730182
- 4. Jiao B, Johnson KM, Ramsey SD, Bender MA, Devine B, Basu A. Long-term survival with sickle cell disease: a nationwide cohort study of Medicare and Medicaid beneficiaries. Blood Adv. 2023;7(13):3276–83. pmid:36929166
- 5.
Administration HRS. Recommended Uniform Screening Panel 2024. 2024. https://www.hrsa.gov/advisory-committees/heritable-disorders/rusp
- 6. Pecker LH, Naik RP. The current state of sickle cell trait: implications for reproductive and genetic counseling. Blood. 2018;132(22):2331–8. pmid:30487130
- 7. Treadwell MJ, McClough L, Vichinsky E. Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle cell trait. J Natl Med Assoc. 2006;98(5):704–10. pmid:16749645
- 8. Grace B, Shawe J, Barrett G, Usman NO, Stephenson J. What does family building mean? A qualitative exploration and a new definition: a UK-based study. Reprod Health. 2022;19(1):203. pmid:36307844
- 9. Pecker LH, Oteng-Ntim E, Nero A, Lanzkron S, Christianson MS, Woolford T, et al. Expecting more: the case for incorporating fertility services into comprehensive sickle cell disease care. Lancet Haematol. 2023;10(3):e225–34. pmid:36708736
- 10. Kopeika J, Oyewo A, Punnialingam S, Reddy N, Khalaf Y, Howard J, et al. Ovarian reserve in women with sickle cell disease. PLoS One. 2019;14(2):e0213024. pmid:30794713
- 11. Chase AR, Howard J, Oteng-Ntim E. Ovarian sickling as a proposed mechanism for premature ovarian failure necessitating ovum donation. Menopause Int. 2009;15(2):70–1. pmid:19465672
- 12. Joseph L, Jean C, Manceau S, Chalas C, Arnaud C, Kamdem A, et al. Effect of hydroxyurea exposure before puberty on sperm parameters in males with sickle cell disease. Blood. 2021;137(6):826–9. pmid:32976551
- 13. Sewaralthahab S, Alsubki LA, Alhrabi MS, Alsultan A. Effects of hydroxyurea on fertility in male and female sickle cell disease patients. A systemic review and meta-analysis. PLoS One. 2024;19(6):e0304241. pmid:38848387
- 14. Leblanc C, Sermondade N, Ogouma-Aworet L, Ly A, Rivet-Danon D, Bachelot G, et al. Reproductive function and sperm parameters in men with sickle cell disease: a systematic review. Asian J Androl. 2026;28(2):117–27. pmid:40443128
- 15. Nickel RS, Maher JY, Hsieh MH, Davis MF, Hsieh MM, Pecker LH. Fertility after Curative Therapy for Sickle Cell Disease: A Comprehensive Review to Guide Care. J Clin Med. 2022;11(9):2318. pmid:35566443
- 16. Elchuri SV, Williamson RS, Clark Brown R, Haight AE, Spencer JB, Buchanan I, et al. The effects of hydroxyurea and bone marrow transplant on Anti-Müllerian hormone (AMH) levels in females with sickle cell anemia. Blood Cells Mol Dis. 2015;55(1):56–61. pmid:25976468
- 17. Nahata L, Caltabellotta NM, Ball K, O’Brien SH, Creary SE. Desire for parenthood and reproductive health knowledge in adolescents and young adults with sickle cell disease and their caregivers. Pediatr Blood Cancer. 2018;65(2):10.1002/pbc.26829. pmid:28944997
- 18. Stanek CJ, Reich J, Theroux CI, Creary SE, Quinn GP, Nahata L. Reproductive Health Counseling among Youth with Sickle Cell Disease. J Pediatr Adolesc Gynecol. 2023;36(4):393–8. pmid:36934802
- 19. Carrithers B, Raja M, Gemmill A, Cayton Vaught KC, Christianson MS, Lanzkron S, et al. Knowledge of fertility and perception of fertility treatment among adults with sickle cell disease (KNOW FERTILITY). Front Glob Womens Health. 2023;4:1191064. pmid:37360321
- 20. Kakourou G, Vrettou C, Mamas T, Traeger-Synodinos J. Reproductive Choices in Haemoglobinopathies: The Role of Preimplantation Genetic Testing. Genes (Basel). 2025;16(4):360. pmid:40282320
- 21. Pecker LH, Maher JY, Law JY, Beach MC, Lanzkron S, Christianson MS. Risks associated with fertility preservation for women with sickle cell anemia. Fertil Steril. 2018;110(4):720–31. pmid:30196969
- 22. Vali S, Mukhtar S, Nandi A, Wilson K, Oakley L, El-Toukhy T, et al. Cumulative outcome of pre-implantation genetic diagnosis for sickle cell disease: a 5-year review. Br J Haematol. 2020;191(5):875–9. pmid:32621537
- 23. Attia M, Kripalani S, Darbari I, Nickel RS. Parents of Children with Sickle Cell Disease Are Interested in Preimplantation Genetic Testing. J Pediatr. 2020;223:178-182.e2. pmid:32586619
- 24. Sudhinaraset M, Woofter R, Huang P. Stratified reproduction and threats to reproductive justice for immigrants: Decision-making for fertility using an ecological model. Soc Sci Med. 2025;382:118334. pmid:40577942
- 25. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57. pmid:17872937
- 26.
Find a Member Center: National Alliance of Sickle Cell Centers. https://sicklecellcenters.org/member-center-map
- 27. Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O’Neal L, et al. The REDCap consortium: Building an international community of software platform partners. J Biomed Inform. 2019;95:103208. pmid:31078660
- 28. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81. pmid:18929686
- 29. Pino Gavidia LA, Adu J. Critical Narrative Inquiry: An Examination of a Methodological Approach. International Journal of Qualitative Methods. 2022;21.
- 30.
Lumivero. NVivo. 14 ed. 2023.
- 31. McLeroy KR, Bibeau D, Steckler A, Glanz K. An ecological perspective on health promotion programs. Health Educ Q. 1988;15(4):351–77. pmid:3068205
- 32. Shin H, Lee A, Choi S, Jo M. Childbearing intentions and influencing factors among single young adults in South Korea: a cross-sectional study. Child Health Nurs Res. 2025;31(1):15–27. pmid:39895294
- 33.
Colen S. Conceiving the new world order: The global politics of reproduction. Like a mother to them: Stratified reproduction and West Indian childcare workers and employers in New York City. Berkeley: Univ. of California Press. 1995. 78–102.
- 34. Greil AL, McQuillan J, Shreffler KM, Johnson KM, Slauson-Blevins KS. Race-ethnicity and medical services for infertility: stratified reproduction in a population-based sample of U.S. women. J Health Soc Behav. 2011;52(4):493–509. pmid:22031500
- 35. Early ML, Strodel RJ, Lake IV, Ruddy JA, Saba JA, Singh SM, et al. Acceptable, hopeful, and useful: development and mixed-method evaluation of an educational tool about reproductive options for people with sickle cell disease or trait. J Assist Reprod Genet. 2022;39(1):183–93. pmid:34806131
- 36. Badawy SM, Beg U, Liem RI, Chaudhury S, Thompson AA. A systematic review of quality of life in sickle cell disease and thalassemia after stem cell transplant or gene therapy. Blood Adv. 2021;5(2):570–83. pmid:33496753
- 37.
Pediatric to Adult Hematologic Care Transition. American Society of Hematology. https://www.hematology.org/education/clinicians/clinical-priorities/pediatric-to-adult-care-transition
- 38. Early ML, Kumar P, Marcell AV, Lawson C, Christianson M, Pecker LH. Literacy assessment of preimplantation genetic patient education materials exceed national reading levels. J Assist Reprod Genet. 2020;37(8):1913–22. pmid:32472448
- 39. Linton EA, Williams EC, Early ML, Prince E, Stewart RW, Lanzkron S, et al. Family planning needs of young adults with sickle cell disease. EJHaem. 2023;4(3):587–94. pmid:37601884
- 40. Combs JC, Dougherty M, Yamasaki MU, DeCherney AH, Devine KM, Hill MJ, et al. Preimplantation genetic testing for sickle cell disease: a cost-effectiveness analysis. F S Rep. 2023;4(3):300–7. pmid:37719105
- 41. Stevenson E, Tanabe P, Knisely M, Masese R, Bulgin D, Preiss L, et al. Infertility and treatment-seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry. Pediatr Blood Cancer. 2023;70(7):e30356. pmid:37057750
- 42. Letourneau JM, Smith JF, Ebbel EE, Craig A, Katz PP, Cedars MI, et al. Racial, socioeconomic, and demographic disparities in access to fertility preservation in young women diagnosed with cancer. Cancer. 2012;118(18):4579–88. pmid:22451228