ANALYSIS OF DISABILITY QUESTIONS FROM THE PREGNANCY RISK ASSESSMENT MONITORING SYSTEM

Eunice Kennedy Shriver National Institute Of Child Health & Human Development

Investigators

Abstract

Background The Women's Health and Fertility Branch is one of the three branches within the division of Reproductive Health (DRH) in the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). The mission of the branch is to promote optimal and equitable reproductive health and advance evidence-based practices through epidemiologic research and surveillance related to health behaviors and outcomes, unintended pregnancy prevention, fertility, and contraception. A few key activities of the branch include conducting population-based surveillance of maternal health, behaviors, and experiences that occur before, during, and after pregnancy, and use survey and surveillance data to monitor health related indicators and performance measure. Also conducting research and programmatic activities on access to and quality of reproductive health care and relationship between contraception and medical conductions including chronic and infectious diseases. DRH's Pregnancy Risk Assessment Monitoring System (PRAMS) is a surveillance project that collects jurisdiction-specific, population-based data on maternal attitudes and experiences, before, during, and shortly after pregnancy. PRAMS surveillance currently covers about 81% of all U.S. births, and has 50 participating sites. The data can be used to identify groups of women and infants at high risk for health problems, to monitor changes in health status, and to measure progress towards goals in improving the health of mothers and infants. Data collected by PRAMS provide essential information relevant to NICHD's mission, particularly in areas related to pregnancy and perinatology, breastfeeding, physical abuse, infant health care, contraception, and influence of disability on pregnancy risks and infant and maternal outcomes. Currently available data suggests that women with disabilities may experience higher rates of adverse outcomes related to pregnancy, delivery, and postpartum care. However, these individual studies generally do not constitute a near­ nationally representative sample, nor do they encompass a broad view of disability or the range of outcomes that women may experience post-pregnancy. In addition, though there is anecdotal and limited qualitative evidence that women with disability have different experiences in prenatal, perinatal, and postnatal care, there is currently no surveillance data available to substantiate this. Scope During the period covered by this agreement, DRH shall staff a research fellow to provide scientific and technical coordination of multiple analyses of PRAMS data related to reproductive health and disability. The multiple analyses will be used by CDC and NCMRR to strengthen the scientific guidance on disability impacts related to reproductive health. An optional supplement to the existing PRAMS survey that was previously funded by NCMRR and first introduced in 2019, will remain in the 2022 questionnaire. Final datasets should become available for all sites that adopt the disability supplement by December 31, 2023. The disability questions used will be those that have already been approved and validated by the Office of Management and Budget (0MB) for use in a wide variety of other surveys of women of reproductive age: (see http://www.washingtongroup­ disability.com/washington-group-question-sets/short-set-of-disability-questions/ for more information). Analyses of other data sources regarding pregnancy and disability, such as from Marketscan and the Behavioral Risk Factor Surveillance System (BRFSS), may also be conducted as appropriate.