Disability and Pregnancy: A Cross-Federal Agency Collaboration to Collect Population-Based Data About Experiences Around the Time of Pregnancy

Abstract

Many reproductive-aged women with a disability can achieve successful healthy pregnancies; however, they may face challenges accessing prenatal and postpartum care and finding providers who are knowledgeable about their specific condition. Depending on the nature of the disability, some women may also be at increased risk for adverse maternal and infant outcomes such as pre-eclampsia, infection, anemia, primary cesarean delivery, or preterm birth. Population-based data are needed to better understand the pregnancy and postpartum experiences of women living with disability. The National Institutes of Health and the Centers for Disease Control and Prevention (CDC) collaborated to address these data gaps by leveraging CDC's Pregnancy Risk Assessment Monitoring System (PRAMS) to gather information about disability among women who have had a recent live birth. Data collection began in 2019. Information gathered through PRAMS can be used to guide the development of clinical practices guidelines, intervention programs, and other initiatives of federal, state, and local agencies to improve services and the health of women of reproductive age living with disability.

Introduction

Approximately 10% to 12% of reproductive-aged women in the United States have a disability.^1–3 Fertility (the ability to conceive a pregnancy within 1 year of trying) and fecundity (the ability to carry a pregnancy to term) are generally not impaired by disability,⁴ and women with disabilities are as likely as their nondisabled peers to desire pregnancy.⁵

Disability, as defined by federal surveys, encompasses impairments, activity limitations, and participation restrictions a person may experience in their daily lives. It can include impairment of vision, hearing, or physical function; inability to complete activities of daily living; or significant cognitive or emotional limitations. Many women with disability achieve successful healthy pregnancies, but they may face a higher risk for adverse maternal and infant outcomes.^6–10 These outcomes may vary by the type of disability or the underlying condition that contributes to the disability.^9–14 For example, women with spinal cord injury may experience complications such as urological problems, skin breakdown, postural hypertension, and autonomic dysreflexia, as well as potential declines in functional ability.¹¹ Women with multiple sclerosis may be at increased risk for premature labor, infection, anemia, and acquired coagulation disorders or neurological complications.¹² Women with intellectual and developmental disabilities are at high risk for pre-eclampsia and venous thromboembolism.^7,13 Women with physical disabilities also have higher odds of primary cesarean delivery^8,15 and higher risk of having a preterm birth or low birthweight infant^{4,6,9,10,13,16} than women with no disability.

During the perinatal period, women with disabilities may also have a hard time physically accessing health care services and finding prenatal providers who are knowledgeable about their specific condition.¹⁷ Challenges include examination tables that are not designed to accommodate people with disabilities, the absence of appropriate scales for wheelchair users, minimal assistance for physical transfers, limited transportation options, and educational materials that may be inaccessible for some individuals with visual or cognitive impairments.^18–21 Women with disability also report a lack of information on what to expect during pregnancy.²² In a qualitative study of women with disability who had experienced pregnancy, multiple unmet needs related to pregnancy and postpartum support were reported, including lack of information about the effect of their disability on their pregnancy and accessible medical, breastfeeding, and infant equipment.²³ In another study, 43% of women with a physical disability said their health care provider knew little or nothing about how their disability could affect their pregnancy.²⁴

A better understanding of pregnancy, delivery, and postpartum experiences of women with disability is needed, as well as information on how these experiences compare with those of nondisabled women. Data from several federally sponsored population-based surveys, including the National Survey of Family Growth (https://www.cdc.gov/nchs/nsfg/index.htm), Behavioral Risk Factor Surveillance System (https://www.cdc.gov/brfss/index.html), the National Health and Nutrition Examination Survey (https://www.cdc.gov/nchs/nhanes/index.htm), and National Health Interview Survey (https://www.cdc.gov/nchs/nhis/index.htm), have information on disability status. However, these surveys typically include a limited number of respondents who are pregnant and ask few questions specific to pregnancy. Furthermore, representative data specific to preconception, prenatal, and postpartum care, as well as data on behaviors and experiences before, during, and shortly after pregnancy, are lacking from currently available data sources.

This report describes a new federal collaboration designed to address gaps in the availability of representative population-based data on pregnancy and disability. The federal agencies involved are the National Institutes of Health's (NIH's) Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the Centers for Disease Control and Prevention's (CDC's) National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) and National Center on Birth Defects and Developmental Disabilities (NCBDDD). For this collaboration, the agencies are using CDC's Pregnancy Risk Assessment Monitoring System (PRAMS), which is an existing surveillance system that collects data from the time before, during, and shortly after pregnancy among women who have had a recent live birth. PRAMS collects information on preconception health, health care access, prenatal and postpartum behaviors (e.g., substance use, breastfeeding initiation, contraceptive use, and infant sleep environment), and other experiences around the time of pregnancy (e.g., pregnancy intention, intimate partner violence, and postpartum depression).

As part of the new collaboration, the PRAMS survey has been expanded to include questions on disability status. The new data will advance the understanding of the experiences of women with disability around the time of pregnancy. This information can be used to guide the development of clinical practice guidelines, intervention programs, and other initiatives by federal, state, and local agencies that are working to improve services and the health of women of reproductive age living with disability, and to reduce barriers to obtaining prenatal, antenatal, and postpartum care services for this population.

Methods

Description of the PRAMS surveillance system

PRAMS is an ongoing, state-specific, and population-based surveillance system conducted by CDC's Division of Reproductive Health, housed in NCCDPHP. PRAMS was initiated in 1987 to monitor maternal behaviors and experiences that occur before, during, and shortly after pregnancy among women who deliver live-born infants in selected U.S. states, cities, and territories. As of 2019, PRAMS collected data in 47 states, New York City, the District of Columbia, and Puerto Rico (hereafter called “sites”), covering ∼83% of U.S. live births. PRAMS is administered by the health departments at each site through a cooperative agreement with CDC. Sites use a standardized protocol for data collection that involves sending up to three self-administered surveys by mail to sampled women 2–6 months after delivery. Women who do not respond to mailed surveys are contacted by telephone to complete the survey.²⁵

PRAMS questionnaire supplements

As part of the new collaboration, questions on disability have been added to the existing PRAMS survey as a questionnaire supplement. PRAMS has a history of successfully implementing such supplements as a way to rapidly gather information on issues of interest or emerging importance to maternal and child health. In 2009, during the H1N1 influenza pandemic, PRAMS first added a set of supplementary questions to the survey outside of the regular questionnaire revision cycle. Since that time, supplements have been added to the PRAMS survey on a number of topics, including Zika virus infection, disaster response and preparedness, e-cigarette use, marijuana use, and opioid use.²⁵ The disability questionnaire supplement will support the work of NIH's NICHD, CDC's NCCDPHP, and CDC's NCBDDD (which fund State Disability and Health Programs).

The disability questionnaire supplement consists of the Washington Group Short Set of Questions on Disability (WG-Short Set).²⁶ These questions have been used on other federal and international surveys (www.washingtongroup-disability.com/about), and are based upon the World Health Organization's International Classification of Functioning, Disability and Health (ICF), which provides standardized language and a standardized framework for conceptualizing disability.²⁷ The WG-Short Set is a cognitively tested validated instrument with six questions on functional ability that assess difficulty with seeing, hearing, walking, remembering, self-care, and communicating. Response options measure severity, ranging from “no difficulty” to “I cannot do this at all” for each of the questions (Table 1). Twenty-five PRAMS sites elected to add the disability questionnaire supplement to their survey in 2019 (Fig. 1). Data collection began in 2019, with data initially becoming available for analysis in early 2020.

Table 1.

Washington Group Short Set of Questions on Disability Implemented on the Pregnancy Risk Assessment Monitoring System Survey in 2019

The next questions are about your ability to do different activities.
1. Do you have difficulty seeing, even when wearing glasses or contact lenses?
No difficulty
Some difficulty
A lot of difficulty
I cannot do this at all
2. Do you have difficulty hearing, even if using a hearing aid(s)?
No difficulty
Some difficulty
A lot of difficulty
I cannot do this at all
3. Do you have difficulty walking or climbing steps?
No difficulty
Some difficulty
A lot of difficulty
I cannot do this at all
4. Do you have difficulty remembering or concentrating?
No difficulty
Some difficulty
A lot of difficulty
I cannot do this at all
5. Do you have difficulty with self care, such as washing all over or dressing?
No difficulty
Some difficulty
A lot of difficulty
I cannot do this at all
6. Using your usual language, do you have difficulty communicating, for example, understanding or being understood?
No difficulty
Some difficulty
A lot of difficulty
I cannot do this at all

FIG. 1.

CDC grantees with the PRAMS disability supplement and State Disability and Health Programs, 2019. CDC, Centers for Disease Control and Prevention; PRAMS, Pregnancy Risk Assessment Monitoring System.

Study population

PRAMS selects a stratified random sample of women from each site's birth certificate records every month. Annual sample sizes range from ∼1,000–3,000 women per site.²⁵ PRAMS data are representative of all live births in each site for each year, and PRAMS is the largest population-based surveillance system collecting data on women with a recent live birth in the United States. An additional strength of PRAMS is that pregnancies are not self-reported, but are documented in birth certificate records from which women are randomly selected to participate in the survey.

To better understand the characteristics of the population sampled by PRAMS, we provide an overview of PRAMS respondents in 2017 from all sites with a response rate of 55% or higher (Table 2). Over half of respondents were 25 years of age or older, white/non-Hispanic, had more than a high school education, were married, had private insurance coverage at delivery, were not participating in the Special Supplemental Nutrition Program for Women, Infants, and Children, and reported an intended pregnancy. The majority of women (>85%) initiated prenatal care in the first trimester, had given birth to an infant who was born full-term, and initiated breastfeeding. Two-thirds of women reported any breastfeeding at 8 weeks postpartum. As a result of the collaboration between NICHD and CDC, disability status will be among the characteristics that can be described with PRAMS data in the future. Researchers and public health professionals will be able to compare experiences before, during, and shortly after pregnancy between women with and without disability.

Table 2.

Distribution of Maternal and Infant Characteristics Among Pregnancy Risk Assessment Monitoring System Respondents for 34 States, New York City, and Puerto Rico, 2017

	Unweighted n (total N = 38,549)	Weighted % (95% confidence interval)
Maternal characteristics
Age (years)
≤19	1,925	4.4 (4.1–4.7)
20–24	7,275	18.5 (17.9–19.1)
25–29	11,433	29.2 (28.6–29.9)
30–34	11,066	29.6 (28.9–30.3)
≥35	6,848	18.2 (17.7–18.8)
Maternal race/ethnicity
Non-Hispanic white	18,339	58.9 (58.2–59.6)
Non-Hispanic black	7,062	15.3 (14.8–15.8)
Hispanic	7,380	17.0 (16.5–17.5)
Non-Hispanic American Indian/Alaska Native	1,700	0.9 (0.9–1.0)
Non-Hispanic Asian or Hawaiian/Pacific Islander	2,204	5.5 (5.2–5.8)
Non-Hispanic multiple races	1,467	2.3 (2.1–2.6)
Education level
Less than high school	4,975	12.3 (11.8–12.8)
High school diploma or GED	9,388	24.1 (23.4–24.7)
Some college or associates degree	11,090	27.2 (26.5–27.9)
Bachelors, masters, doctorate, or professional degree	12,764	36.4 (35.7–37.1)
Marital status
Married	22,693	62.2 (61.5–63.0)
Unmarried	15,822	37.8 (37.0–38.5)
Delivery payment
Private	18,978	53.4 (52.6–54.1)
Medicaid	17,223	41.2 (40.4–41.9)
Other	745	2.2 (2.0–2.5)
Uninsured	1,320	3.3 (3.0–3.6)
WIC participation during pregnancy
No	22,327	63.2 (62.4–63.9)
Yes	15,693	36.8 (36.1–37.6)
Pregnancy intentiona
Intended	21,658	58.9 (58.1–59.6)
Mistimed	7,439	19.5 (18.9–20.1)
Unwanted	2,501	6.1 (5.7–6.5)
Unsure	6,303	15.5 (15.0–16.1)
Timing of prenatal care initiation
First trimester	32,396	86.9 (86.4–87.4)
Late or no prenatal care	5,222	13.1 (12.6–13.6)
Infant gestational age (weeks)
<34	2,409	2.4 (2.2–2.6)
34–36	4,058	6.3 (6.0–6.7)
≥37	32,028	91.2 (90.9–91.6)
Breastfeeding initiation
No	4,566	12.3 (11.8–12.8)
Yes	32,687	87.7 (87.2–88.2)
Any breastfeeding at 8 weeks postpartum
No	11,907	32.3 (31.6–33.0)
Yes	25,003	67.7 (67.0–68.4)

PRAMS sites that met the required 55% response rate threshold in 2017 for inclusion in data analysis: Alabama, Alaska, Colorado, Connecticut, Delaware, Georgia, Illinois, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Missouri, Montana, New Hampshire, New Jersey, New Mexico, New York City, New York State, North Carolina, North Dakota, Oklahoma, Pennsylvania, Rhode Island, South Dakota, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, Wyoming, and Puerto Rico.

^aRespondent reported that thinking back to the time before she got pregnant that she wanted to be pregnant then or sooner (intended), later (mistimed), not then or at no time in the future (unwanted), or was unsure what she wanted (unsure).

GED, general education diploma; PRAMS, Pregnancy Risk Assessment Monitoring System; WIC, women, infants, and children.

Discussion

As we observe the 30^th anniversary of the passage of the Americans with Disabilities Act [ADA] by Congress (https://www.eeoc.gov/eeoc/history/35th/1990s/ada.html), the inclusion of disability questions on the PRAMS survey provides a unique opportunity to leverage the existing PRAMS surveillance infrastructure to provide population-based estimates on prenatal and postpartum experiences of women with disability to support the ongoing work of NICHD, CDC, and other stakeholders.

NICHD has been leading initiatives to address research and data gaps for this population for more than a decade through funding opportunities and workshops. In 2009, NICHD's National Center for Medical Rehabilitation Research funded the Center for Research on Women with Disabilities, which conducted one of the first national surveys of women with disabilities who experienced pregnancy.²¹ NICHD followed this effort by convening a meeting on pregnancy in women with disabilities,⁴ which identified gaps and opportunities for this area of study. The result was Pregnancy in Women with Disabilities (https://grants.nih.gov/grants/guide/pa-files/PA-17-452.html), a funding opportunity for research projects that focused on investigating the incidence, course, and outcomes of pregnancy among women with disabilities.

The information that will be collected through the new PRAMS disability questionnaire supplement will support this earlier work and help NICHD conduct studies to guide preconception, antenatal, and postpartum counseling for women with disabilities. It can also guide the development of strategies to address barriers to reproductive health care for this population and help health care providers work with their patients to manage pregnancy, the puerperium, and the transition to parenthood to improve outcomes for women with disabilities and their families.

CDC also has a history of supporting initiatives to improve the health of people with disabilities and will benefit from PRAMS data specific to the time around pregnancy. Since 1989, CDC's Disability and Health Promotion Branch, which is part of NCBDDD, has funded State Disability and Health Programs to develop and strengthen states' capacity to plan, implement, and evaluate programmatic activities aimed at promoting disability inclusion and reducing health disparities between people with and without disabilities. Over the years, State Disability and Health Programs have supported initiatives promoting the inclusion of women with disabilities in existing health promotion programs. Collectively, these programs have examined health disparities between women with and without disabilities, identified barriers to breast and cervical cancer screening, translated and disseminated important health information (e.g., about cancer screening, intimate partner violence, and sexual and reproductive health), and promoted system changes to improve the health of women with disabilities. As of 2019, there are 19 State Disability and Health Programs (https://www.cdc.gov/ncbddd/disabilityandhealth/programs.html). Staff from 11 of these programs worked collaboratively with their state PRAMS counterparts to include the disability questionnaire supplement in their state PRAMS surveys in 2019 (Fig. 1).

As each federal agency works with different partners, there is broad potential to widely disseminate findings from the PRAMS disability questionnaire supplement. Examples of questions of interest that could be answered by the availability of these new data include whether the presence of a disability, the type of disability, or the severity of a disability affect access to prenatal and postpartum care, pregnancy health behaviors, the delivery experience, postnatal outcomes, breastfeeding, or the use of postpartum contraception.

Conclusions

NICHD supports a wide range of activities related to women, pregnancy, and disability. CDC's NCBDDD has a history of state-level initiatives supporting people living with disabilities. The PRAMS data from CDC's NCCDPHP provide a rich unique source of information on many topics relevant to maternal and infant health that can be studied in conjunction with data on disability and functional limitations. PRAMS data have been used to raise the visibility and awareness of issues that may affect women before, during, and after pregnancy and to guide programmatic efforts at state and national levels (https://www.cdc.gov/prams/index.htm). The information gathered through the new collaboration between NICHD and CDC will help researchers, public health professionals, and health care professionals understand the prenatal, antenatal, and postpartum needs of women with disability. This knowledge can help improve access to programs and services to improve the health and pregnancy outcomes of women of reproductive age living with a disability.

Disclaimer

The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention or the National Institutes of Health.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.