Reproductive decision-making in families containing multiple individuals with epilepsy

Jacquelyn Nakamura; Shawn T Sorge; Melodie R Winawer; Jo C Phelan; Wendy K Chung; Ruth Ottman

doi:10.1111/epi.16889

Reproductive decision-making in families containing multiple individuals with epilepsy

Epilepsia. 2021 May;62(5):1220-1230. doi: 10.1111/epi.16889. Epub 2021 Apr 4.

Authors

Jacquelyn Nakamura¹, Shawn T Sorge^{2

3

4}, Melodie R Winawer^{2

5}, Jo C Phelan⁶, Wendy K Chung^{7

8}, Ruth Ottman^{2

5

9

10}

Affiliations

¹ Renaissance School of Medicine, Stony Brook University, Stony Brook, New York, USA.
² G. H. Sergievsky Center, Vagelos College of Physicians and Surgeons, Columbia University, New York, New York, USA.
³ Department of Clinical Psychology, Long Island University, Brooklyn, New York, USA.
⁴ Psychology Division, Veterans Affairs New York Harbor Healthcare System, New York, New York, USA.
⁵ Department of Neurology, Vagelos College of Physicians and Surgeons, Columbia University, New York, New York, USA.
⁶ Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, New York, USA.
⁷ Department of Pediatrics, Vagelos College of Physicians and Surgeons, Columbia University, New York, New York, USA.
⁸ Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University, New York, New York, USA.
⁹ Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA.
¹⁰ Division of Translational Epidemiology, New York State Psychiatric Institute, New York, New York, USA.

Abstract

Objective: This study evaluated factors influencing reproductive decision-making in families containing multiple individuals with epilepsy.

Methods: One hundred forty-nine adults with epilepsy and 149 adult biological relatives without epilepsy from families containing multiple affected individuals completed a self-administered questionnaire. Participants answered questions regarding their belief in a genetic cause of epilepsy (genetic attribution) and estimated risk of epilepsy in offspring of an affected person. Participants rated factors for their influence on their reproductive plans, with responses ranging from "much more likely" to "much less likely" to want to have a child. Those with epilepsy were asked, "Do you think you would have wanted more (or any) children if you had not had epilepsy?"

Results: Participants with epilepsy had fewer offspring than their unaffected relatives (mean = 1.2 vs. 1.9, p = .002), and this difference persisted among persons who had been married. Estimates of risk of epilepsy in offspring of an affected parent were higher among participants with epilepsy than among relatives without epilepsy (mean = 27.2 vs. 19.6, p = .002). Nineteen percent of participants with epilepsy responded that they would have wanted more children if they had not had epilepsy. Twenty-five percent of participants with epilepsy responded that "the chance of having a child with epilepsy" or "having epilepsy in your family" made them less likely to want to have a child. Having these genetic concerns was significantly associated with greater genetic attribution and estimated risk of epilepsy in offspring of an affected parent.

Significance: People with epilepsy have fewer children than their biological relatives without epilepsy. Beliefs about genetic causes of epilepsy contribute to concerns and decisions to limit childbearing. These beliefs should be addressed in genetic counseling to ensure that true risks to offspring and reproductive options are well understood.

Keywords: epidemiology; genetic attribution; genetic counseling; psychosocial.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Adult
Decision Making*
Epilepsy* / genetics
Female
Genetic Predisposition to Disease
Health Knowledge, Attitudes, Practice*
Humans
Male
Middle Aged
Reproductive Behavior / psychology*

Abstract

Publication types

MeSH terms

Grants and funding