ObstetricsPregnancy in Women With Intellectual and Developmental Disabilities
Introduction
Intellectual and developmental disabilities (IDD) are common, affecting one in every 100 individuals.1 These neurodevelopmental disorders are marked by limitations in cognitive skills and communication, social skills, and executive functioning.2 Historically, many women with IDD were institutionalized and/or sterilized.3 With establishment of community-based living and recognition of the rights of persons with disabilities,4 these practices are no longer common.5 Although studies of parenting skills in women with IDD date back to the 1940s,6 research on reproductive health is minimal.7 Accurate estimation of fertility rates in women with IDD and the social and health characteristics of those who give birth is critical for developing clinical programming and public health policy surrounding sexual health and contraception as well as care during pregnancy when support needs are likely intensive.
There is no current, valid estimate of the yearly fertility rate in women with IDD. Two clinical studies in the United States in the 1980s documented the occurrence of live births among women with IDD over an unknown number of years. A medical clinic survey of 11- to 23-year-olds with IDD (N = 87) reported three live births8; a gynaecological surgery clinic chart review noted six live births to 300 women with IDD (average age 38.4 years).9 To our knowledge, only the small population-based study reported by Weiber et al. determined a yearly fertility rate.10 These authors used a special education register to identify 98 women with IDD aged 15 to 33 years in a small Swedish county. They found an average yearly fertility rate of 20.4 live births per 1000 women with IDD (vs. 79.5 per 1000 for 15- to 33-year-olds in the county overall).
Likewise, there is limited understanding of the social and health characteristics of women with IDD who give birth. Women with IDD face multiple disparities: they are more likely than women without IDD to live in poverty,11 to have chronic health conditions12 and mental health issues,13 and to have poor access to primary care.14 They are also more likely to take multiple prescription medications, including psychotropics.15 Although these factors are predictors of maternal and neonatal morbidity,16, 17 only one recent study examined the characteristics of pregnant women with IDD.18 This American retrospective cohort study found that women with IDD (N = 703, identified in 1998–2009) were more likely to be young, less educated, and unmarried. Important health characteristics (e.g., pre-existing health conditions, medication use) were unmeasured.18 Thus, it is unknown to what extent pregnant women with IDD in Canada face social and health disparities which could put their pregnancy at risk.
Our objectives were: to describe the general and age-specific fertility rates of Ontario women with IDD in the 2009 fiscal year as well as the social and health characteristics of those with a singleton live birth, and to compare these to women without IDD.
Section snippets
Methods
We conducted a retrospective cohort study in Ontario, which is Canada's most populous province, with over 13 million residents and 140 000 births per year.19 We obtained data from the Institute for Clinical Evaluative Sciences (ICES). ICES is an independent, non-profit organization that houses databases containing administrative, socio-demographic, and clinical information gathered through health care utilization of Ontario residents, all of whom receive universal health care coverage. These
Results
In Ontario in the 2009 fiscal year, there were 21 181 women with IDD aged 18 to 49 years who had a total of 430 live births. The GFR was 20.3 live births per 1,000 women (95% CI 18.4 to 22.2) in women with IDD and 43.4 live births per 1000 women (95% CI 43.0 to 43.8) in women without IDD. This resulted in a RR of 0.47 (95% CI 0.43 to 0.51) comparing the GFRs in the two groups.
ASFRs peaked earlier in women with IDD, with the highest ASFR among 25- to 29-year-olds (42.3 live births per 1000
Discussion
In this study, the largest population-based study of fertility in women with IDD to date, we found that the GFR in women with IDD was 20.3 live births per 1000 women. Although this is half the GFR in women without IDD, it is clinically significant; in one year alone, we observed 430 live births to women with IDD. Over time, this could have a substantial population impact, with nearly 1000 children being born to women with IDD every two years in an area with the population size of Ontario.
Conclusion
We found that although women with IDD have a lower GFR than their peers without IDD, ASFRs are similar in young women with and without IDD. Moreover, women with IDD with a singleton live birth experience higher rates of social and health disparities than those without IDD. They also have high rates of medication use during pregnancy. Our findings suggest an urgent need to focus on reproductive and perinatal health in women with IDD and to develop appropriate services and policies to support
Acknowledgements
This study was funded by the Ministry of Health and Long Term Care Health Services Research Fund program award and is part of the Health Care Access Research and Developmental Disabilities Program. The study was also supported by the Institute for Clinical Evaluative Sciences, which is funded by an annual grant from the Ontario Ministry of Health and Long Term Care. Hilary Brown is funded by a Canadian Institutes of Health Research Postdoctoral Award. The opinions, results, and conclusions
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