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Full text release has been delayed at the author's request until April 27, 2025

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Healthcare Provider Recognition of Pregnancy Related Risks and Management Considerations in Patients with Tuberous Sclerosis Complex

Rose, Meredith
http://orcid.org/0009-0000-0196-1987
http://rave.ohiolink.edu/etdc/view?acc_num=ucin16847750222872

Abstract Details

2023, MS, University of Cincinnati, Medicine: Genetic Counseling.
Background Patients with Tuberous Sclerosis Complex (TSC) face an increased risk of maternal health complications and worsening disease manifestations during pregnancy. There are no established consensus guidelines that address pregnancy management in patients with TSC. In the absence of established guidelines, TSC healthcare providers rely on individual experience and preference to derive treatment decisions when caring for this population. We sought to ascertain provider recognition of pregnancy related maternal complications in patients with TSC and the common evaluation and management strategies employed to address these complications. Methods We conducted an anonymous cross-sectional survey of healthcare providers. Descriptive analysis was used to analyze our three primary variables: 1) Provider recognition of maternal risks/complications; 2) Provider recommendations before and during pregnancy; and 3) Provider/clinic protocols. Results We received responses from 87 providers from 11 countries, with 40.7% (n=35) seeing >30 TSC patients yearly. The majority of providers (n=70, 88.6%) deemed that a patient with TSC needed expert care beyond the standard of care for typical pregnancy, with over 25% of providers reporting that they have seen LAM exacerbation, seizures, and preterm labor in pregnant patients with TSC. Providers who managed mTOR inhibitors (mTORi) also agreed that mTORi use should be stopped prior to pregnancy (n=45, 68.2%) but there was uncertainty about when to stop the mTORi (one month 28.9%, two months 11.1%, three months 42.2%, and 6-12 months 2.2%). Additionally, there was no consensus on restarting mTORi in response to disease progression. When asked about provider or clinic specific protocols, 71.6% (n=53) of providers stated that they do not have a clear protocol for management decisions for patients with TSC before/during pregnancy. Conclusion Healthcare providers recognize that patients with TSC are at an increased risk for maternal health complications during pregnancy. However, there are wide inter-individual variances in practice, especially pertaining to decisions regarding mTORi use. There is a critical need to better understand the implications of pregnancy for patients with TSC and to draft consensus recommendations to guide management decisions.
Melanie Myers, Ph.D. (Committee Chair)
Jennifer Glass, MS (Committee Member)
Emily Wakefield, M.S. (Committee Member)
David Ritter, Ph.D. (Committee Member)
Leandra Tolusso, M.S. (Committee Member)
Paul Horn, Ph.D. (Committee Member)
27 p.
Genetics
Tuberous Sclerosis Complex TSC; maternal pregnancy complications; prenatal care; screening and management; provider risk recognition; lymphangioleiomyomatosis LAM

Recommended Citations

Citations

  • Rose, M. (2023). Healthcare Provider Recognition of Pregnancy Related Risks and Management Considerations in Patients with Tuberous Sclerosis Complex [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin16847750222872

    APA Style (7th edition)

  • Rose, Meredith. Healthcare Provider Recognition of Pregnancy Related Risks and Management Considerations in Patients with Tuberous Sclerosis Complex. 2023. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin16847750222872.

    MLA Style (8th edition)

  • Rose, Meredith. "Healthcare Provider Recognition of Pregnancy Related Risks and Management Considerations in Patients with Tuberous Sclerosis Complex." Master's thesis, University of Cincinnati, 2023. http://rave.ohiolink.edu/etdc/view?acc_num=ucin16847750222872

    Chicago Manual of Style (17th edition)

ucin16847750222872
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This open access ETD is published by University of Cincinnati and OhioLINK.