OHSU researcher Horner-Johnson: Groundbreaking research on disability and pregnancy

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Height adjustable exam tables, scales that accommodate wheelchair users, and tactile models of the birth canal are not common equipment in OB/GYN offices. These are examples of accommodations that can improve prenatal care and the experience of pregnancy for women with specific disabilities. Often missing, too, are the knowledge and skills necessary to provide information to women with intellectual disabilities or to adjust the volume on a sonogram for women with hearing impairments.

These are increasingly important considerations, given that women with disabilities are now as likely to become pregnant as women without disabilities. Among women giving birth, the proportion with disabilities more than doubled between 2000 and 2010, according to data from California. However, there continue to be major gaps in knowledge on maternal health and pregnancy outcomes for these women—particularly within disability subgroups. New findings make clear that more attention to this population is needed in order to develop better care practices that may impact maternal and perinatal outcomes.

In the July 2017 Disability and Health Journal, a team led by Willi Horner-Johnson, Ph.D., published two first-of-their-kind studies: an analysis of live birth, miscarriage, and abortion in a national sample of women with and without disabilities, and a time-trend analysis of births and cesarean deliveries for women with physical, sensory, or intellectual disabilities. These studies are part of a larger pregnancy and disability project led by Horner-Johnson, an associate professor in the collaborative OHSU-PSU School of Public Health and in OHSU’s Institute on Development and Disability.

The study on live birth, miscarriage, and abortion among U.S. women with and without disabilities demonstrated that there is a good likelihood that women with disabilities will deliver successfully. Rates of live births and miscarriages (84 percent and 14 percent, respectively) for women with disabilities were similar to those for women without disabilities when adjusting for factors such as maternal age, marital status, and health status. There was no gap in rates of abortion.

The publication on time trends in births and cesarean deliveries builds on a previous paper on cesarean delivery among women with physical, sensory, or intellectual disabilities, published in the May–June 2017 Women’s Health Issues by Horner-Johnson’s team. That study found that women with disabilities were twice as likely as women without disabilities to deliver by cesarean—32 percent compared to 16 percent. Differences in cesarean delivery by disability subgroup were remarkable—58 percent of women with vision disabilities delivered their first child by cesarean, while women with hearing impairments had cesarean deliveries at roughly the same rate as women without disabilities. The new paper examines patterns of cesarean delivery across time, from 2000-2010. While differences between women with and without disabilities were apparent in every year of data analyzed, the size of the gap was significantly smaller in the most recent years than it had been in earlier years. Additionally, there was a steady increase in representation of women with disabilities among those giving birth in California during this time period.

These studies are some of the first to examine more than one type of disability. Horner-Johnson’s research underscores that understanding the heterogeneity across disability subgroups is important to addressing the distinct needs of women with particular types of disability—and to guiding clinical practice.

 

Horner-Johnson’s coauthors were Aaron B. Caughey, M.D., Ph.D., Sheetal Kulkarni-Rajasekhara, M.P.H., Blair Darney, Ph.D., M.P.H., and Mekhala Dissanayake, M.P.H., C.P.H. (Live birth, miscarriage, and abortion among U.S. women with and without disabilities);  Caughey, Fran Biel, M.P.H., M.S., and Darney (Time trends in births and cesarean deliveries among women with disabilities); and Caughey, Darney, Biel, and Brian Quigley (Primary cesarean delivery patterns among women with physical, sensory, or intellectual disabilities). 

Research reported in these publications was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under award #R21HD081309 (Horner-Johnson, PI). Support for Horner-Johnson’s time was provided by grant #K12HS022981 from the Agency for Healthcare Research and Quality (Guise, PI).