Abstract
Background:
Preconception health is a critical determinant of health outcomes for women and their offspring. Given higher rates of prenatal and postpartum complications among women with disabilities, it is important to investigate a range of preconception health indicators in this population.
Materials and Methods:
Data were from women of reproductive age (18–44 years) who participated in the National Health and Nutrition Examination Surveys, 2013–2018. Disability was self-reported as serious difficulty hearing, seeing, concentrating, walking, dressing, and/or running errands due to physical, mental, or emotional conditions. Preconception health indicators were adapted from those developed by the Core State Preconception Health Indicators Working Group. Multivariable Poisson regression estimated adjusted prevalence ratios (aPRs) and 95% confidence intervals of preconception health indicators among women with disabilities compared with those without disabilities.
Results:
Of 4055 women, 601 (15%, weighted) reported having any disabilities, and of these women, 220 (6%) reported having 2 or more types of disabilities. Women with any disabilities were more likely to have suboptimal preconception health indicators compared with women without disabilities, including low education and household income, no recent dental visit, difficulty getting pregnant, current smoking, binge drinking, drug use, obesity, no multivitamin use, physical inactivity, long sleep durations, asthma, hypertension, and sexually transmitted infections (aPRs from 1.1 to 2.0). The greatest disparities between women with and without disabilities were for indicators of self-rated poor or fair general health, depression, and diabetes, with aPRs ranging from 2.4 to 3.8.
Conclusions:
Disparities in preconception health indicators are modifiable and may be addressed through adequate access to health care, interventions targeting lifestyle and health behaviors, and education and training for all health practitioners.
Introduction
A woman's health status before conception is an important determinant of pregnancy complications and birth outcomes as well as chronic health conditions for herself and her offspring. 1 –3 Supporting women to achieve optimal preconception health is recognized as a primary prevention strategy. The United States (U.S.) Centers for Disease Control and Prevention (CDC) and other national- and state-level organizations have systematically defined and prioritized preconception health indicators for women and incorporated them into surveillance strategies, clinical practice guidelines, and evidence-based interventions and policies. 4,5
In 2007, the Core State Preconception Health Indicators Working Group (convened by the CDC and composed of experts from 7 states) developed a list of 45 optimal preconception health indicators within 10 health domains, including social determinants of health, chronic medical conditions, lifestyle behaviors, and access to and utilization of health care services. 4 The majority of these indicators are modifiable. Given the long-term and potential transgenerational influences of preconception health, 2,3 it is necessary not only to evaluate preconception health indicators among all women of reproductive age (18–44 years) but also to identify women who are at high risk for disparities in these indicators.
In the U.S. ∼18% of women of reproductive age report at least one disability related to hearing, vision, cognition, mobility, self-care, or independent living. 6 Previous studies using data from the Rhode Island and Massachusetts Pregnancy Risk Assessment Monitoring System (PRAMS), a state-level surveillance system of U.S. women with recent births, found that women with disabilities were more likely to report health-related risk factors around the time of pregnancy compared with those with no disabilities, including prepregnancy obesity and other chronic conditions, 7 depression, 8 and smoking. 7,9
Other studies among women of reproductive age who participated in the U.S. Behavioral Risk Factor Surveillance System (BRFSS), 10 –12 a telephone survey of health risk behaviors among adults aged 18 years and older, and those within the Ontario (Canada) health system 13 also found greater prevalence of preconception health risks associated with disability status. Inadequate health care use (e.g., dental visits), poor general and mental health, obesity, diabetes, asthma, and limited social support were consistently observed for women with disabilities compared with those without disabilities.
Collectively, these findings are concerning. Women with disabilities become pregnant at rates comparable to those of all women of reproductive age, 14,15 and they are more likely to experience pregnancy complications and poor birth outcomes compared with women without disabilities, which may at least partially be attributed to disparities in preconception and prenatal health indicators. 16 –18
There are few resources available to investigate the health of women of reproductive age with disabilities. Previous studies using PRAMS 7 –9 and BRFSS (before 2017) 11,12 were limited in their assessment of women's disability status with only one and two questions, respectively, addressing limitations in any activities because of physical, mental, or emotional problems and any health problems requiring the use of special equipment. The U.S. National Health and Nutrition Examination Survey (NHANES) is a nationally representative program of studies that collects a range of sociodemographic, behavioral, and clinical data from individuals of all ages. 19 Beginning in 2013, NHANES incorporated six questions about disability status.
These questions specifically address serious difficulties related to hearing, seeing, concentrating, walking, dressing, and/or running errands due to physical, mental, or emotional conditions. In the current analysis, we leveraged these data to examine associations between self-reported disability status and preconception health indicators among U.S. women of reproductive age. We also considered several indicators that were not examined in prior studies, including sleep, fruit and vegetable intakes, family planning, and drug use. Our findings may contribute to the design and implementation of clinical and public health strategies that aim to reduce reproductive health disparities faced by women with disabilities.
Materials and Methods
NHANES is conducted by the National Center for Health Statistics (NCHS) and annually collects interview, physical examination, and laboratory data from a nationally representative sample of ∼5000 individuals of all ages.
19
The purpose of NHANES is to assess the health and nutrition status of the U.S. population. For the current analysis, we restricted our sample to include data from all women aged 18–44 years who participated in NHANES 2013–2018 because these three survey cycles (2013–2014; 2015–2016; and 2017–2018) included a disability questionnaire with specific questions on disability status. We excluded women who had a previous hysterectomy (n = 120). Informed consent was obtained from all participants, and approval for the studies was obtained from the NCHS Research Ethics Review Board. Descriptions of NHANES and all procedures are detailed online (
Disability status
Self-reported disability status was based on responses (yes or no) to six questions: (1) “deaf or serious difficulty hearing”; (2) “blind or serious difficulty seeing even when wearing glasses”; (3) “serious difficulty concentrating, remembering, or making decisions”; (4) “serious difficulty walking or climbing stairs”; (5) “difficulty dressing or bathing”; and (6) “difficulty doing errands alone such as visiting a doctor's office or shopping.” We dichotomized self-reported disability status as none or any disabilities. We further categorized any self-reported disabilities as four disability types: sensory (1 and 2); cognitive (3); movement (4); and self-care (5 and 6). 20 For analyses, we examined associations for women who reported only one type of self-reported disability and for those who reported two or more types of disabilities, compared with women with no disabilities.
Preconception health indicators
We adapted the 2007 Core State Preconception Health Indicators Working Group's list of 45 preconception health indicators within 10 preconception health domains based on data available in NHANES (Table 1). 4 NHANES collected information related to 22 preconception health indicators across 9 domains. Information was not available for the social support domain (e.g., physical and mental abuse) or indicators specific to pregnancy (e.g., “ever told by healthcare provider that you had diabetes prior to pregnancy”) or the postpartum (e.g., “postpartum depression”). When applicable, we used other information collected by NHANES to serve as surrogate preconception health indicators. For the current analyses, we defined and examined the following preconception health domains and corresponding indicators:
Core State Preconception Health Domains and Indicators and Corresponding Variables Collected Among Women of Reproductive Age (18–44 years) Participating in the National Health and Nutrition Examination Surveys, 2013–2018
NHANES, National Health and Nutrition Examination Survey; PCH, preconception health.
General health status and life satisfaction
Self-rated their general health status as excellent/very good, good, fair, or poor.
Social determinants of health
Highest achieved educational level (less than high school, high school graduate, college graduate or higher) and household income at or below 200% of the Federal Poverty Threshold (yes or no).
Health care
Current type of health insurance (private, public, none/other); timing of the most recent health care visit (within the previous year; yes or no); and timing of the most recent dental visit (<1 year, 1–3 years, >3 years).
Reproductive health and family planning
Several of the preconception health indicators within this domain, such as previous birth outcomes and pregnancy intendedness, were part of restricted use data or not collected by NHANES. Instead, we examined available factors related to women's reproductive and preconception health: women reported on ever using birth control (yes or no); having a regular period during the previous year (yes or no); seeing a physician because they were unable to become pregnant (yes or no); and trying to become pregnant for at least a year (yes or no).
Tobacco, alcohol, and substance use
Reported cigarette smoking (current, former, and never); exposure to secondhand smoking (current smoker, nonsmoker with exposure, and nonsmoker with no exposure); frequency of alcohol consumption during the past year (less than once per week, one to two times per week, and three or more times per week); and binge drinking (defined as number of days in the previous month when consumed more than four drinks in one sitting; none or 1 or more days). Within this domain, we also examined reported ever use of marijuana (yes or no), illegal drugs (i.e., cocaine, heroin, methamphetamines, and injected drugs; yes or no), or a drug treatment or drug rehabilitation program (yes or no).
Mental health
Women completed the Patient Health Questionnaire-9 (PHQ-9, total points = 27) to assess depressive symptoms during the previous 2 weeks and were categorized as having none/minimal depressive symptoms (0–4 points), mild depressive symptoms (5–9 points), and moderate/severe depressive symptoms (≥10 points). 21 Women also reported if they had seen a mental health professional within the previous year (yes or no). This information was used as a surrogate for the preconception health indicator of reporting mental health as not good for 14 of the past 30 days.
Nutrition and physical activity
Daily intakes of fruits and vegetables (five or more servings per day, excluding white potatoes; yes or no) were calculated from one 24-hour food recall administered during the in-person interview. Body mass index (BMI, kg/m2) was derived from weight and height measured by NHANES staff at an in-person medical examination and categorized as healthy (<25 kg/m2), overweight (25 to <30 kg/m2), and obese (≥30 kg/m2). The few women with underweight BMI (<18.5 kg/m2; n = 113, 3%) were included in the healthy weight category. Physical activity was calculated based on questions asking the amount of time and frequency spent doing moderate and vigorous recreational activities during the previous 7 days.
This variable was dichotomized based on the preconception health indicator of meeting recommended levels of at least 150 minutes of moderate and/or vigorous recreational physical activities per week (yes or no). 4 Multivitamin use, defined as taking a least one supplement containing two or more vitamins during the previous month (yes or no), was used as a surrogate for the preconception health indicator of “daily multivitamin/prenatal vitamin/folic acid supplementation in the month prior to pregnancy.” Additionally, we examined self-reported number of hours of weeknight sleep (short, <7 hours; ideal, 7–9 hours; and long, >9 hours) because sleep is an important health behavior linked to women's reproductive health and numerous chronic medical conditions. 22 –24
Chronic conditions
Women reported whether a doctor had ever told them that they had diabetes (yes/borderline or no), hypertension (yes or no), and asthma (yes or no).
Infections
Women reported whether they had ever been tested for HIV (yes or no) and whether they had ever been told by a doctor that they had chlamydia, gonorrhea, or genital warts (yes or no, only available in NHANES 2013–2014 and 2015–2016).
Other sociodemographic characteristics
Women self-reported their age (years), race/ethnicity (non-Hispanic white, non-Hispanic black, Mexican American, other Hispanic, and other race/ethnicity), and marital status (single or married/living with partner). Gravidity (never pregnant, one to two pregnancies, three or more pregnancies) and current pregnancy status (based on a urine test or self-report; yes or no) were only publicly available among women aged 20 years and older.
Statistical analyses
All analyses were conducted using Stata version 15.1 (College Station, TX, USA) and were statistically weighted for the complex survey design of NHANES using survey data commands (svy). For descriptive analyses, we calculated unweighted counts, survey weighted counts, survey weighted means with standard errors (SE, continuous variables), and survey weighted proportions (categorical variables). Bivariate associations of disability status (no disabilities, any self-reported disabilities, only one type of disability, and two or more types of disabilities) and preconception health indicators were tested using chi-square tests (categorical variables) and t-tests (continuous variables). Poisson regression models estimated associations (prevalence ratios [PRs] and 95% confidence intervals [CIs]) between disability status and preconception health indicators.
Disability status was included in models as a dichotomous variable (any disabilities compared with no disabilities) and as categories (only one type of disability and two or more types of disabilities compared with no disabilities). Covariate selection was based on those identified from the previous literature. 10,11 Models were adjusted for age, race/ethnicity, education, marital status, and health insurance status (when applicable). Household income status was missing for ∼10% of the sample. We examined models with and without adjustment for household income status and found no appreciable differences in the magnitude or precision of effect estimates; therefore, household income was not included in final regression models.
There were 176 (5%) women who were pregnant at the time of data collection; these women were included in analyses because they were of reproductive age and the majority of the preconceptional health indicators are independent of pregnancy status. However, because pregnancy may be related to health behaviors and access to health care, we conducted sensitivity analyses excluding these women. Finally, we conducted the Bonferroni correction based on the number of hypotheses being tested (calculated as α = 0.05/31 = 0.0016) to account for multiple comparisons. Models with p-values less than the Bonferroni-corrected significance level threshold of 0.0016 are denoted in the results.
Results
There were 4055 women aged 18–44 years who participated in NHANES 2013–2018 and met the inclusion criteria. Fifteen percent (n = 601) of all women reported having any disability. Among those with any disability, 381 (9%) reported having only 1 type of disability and 220 (6%) reported having 2 or more types of disabilities. Women with any disabilities were more likely to be single and have at least one previous pregnancy compared with women with no disabilities; no differences were observed for race/ethnicity (Table 2). On average, women with one disability were slightly younger [weighted mean (SE): 29.5 (0.52) years] than women with no disabilities [weighted mean (SE): 30.8 (0.21) years], whereas women with two or more disabilities were slightly older [weighted mean (SE): 31.5 (0.71) years].
Distributions of Sociodemographic Characteristics and Preconceptional Health Indicators of Women of Reproductive age (18–44 years) by Self-Reported Disability Status (Categorized as No Disabilities, Any Disabilities, Only One Disability, and Two or More Disabilities), National Health and Nutrition Examination Surveys 2013–2018 (Unweighted n = 4055)
All percentages are weighted for the NHANES design.
p-Value comparing to women with no self-reported disabilities.
p-Value comparing to women with one self-reported disability.
Pregnancy information was not available for women aged 18 and 19 years.
Defined as ≥150 minutes of moderate and vigorous physical activity per week.
Only included in NHANES 2013–2016.
NR due to cell sizes <10.
SE, standard error; NR, not reported; BMI, body mass index; HIV, human immunodeficiency virus; STI, sexually transmitted infection.
Distributions of preconception health indicators varied by disability status (Table 2). Greater proportions of women with any disabilities had poor or fair self-rated health; did not graduate high school; had household incomes at or below 200% of the Federal Poverty Threshold; had no health insurance; had a health care visit within the previous year; and did not have a dental visit within the previous 3 years (p < 0.05 for all comparisons). For reproductive health, substance use, and nutritional indicators, greater proportions of women with any disabilities tried to become pregnant for a year or more; were current smokers; engaged in binge drinking; ever used marijuana and illegal drugs; ever attended a drug rehabilitation program; had obesity; did not take a multivitamin; were physically inactive; and had short or long sleep durations (p < 0.05 for all comparisons).
For mental health, medical conditions, and infections, women with any disabilities were more likely to report mild-to-severe depressive symptoms; seeing a mental health care provider; ever being told by a physician that they had diabetes, hypertension, and asthma; and ever having a sexually transmitted infection (p < 0.05 for all comparisons). Differences were observed when comparing preconceptional health indicators between women with two or more types of disabilities with those with only one type of disability. Greater proportions of women with two or more types of disabilities had ever attended a drug rehabilitation program; obesity; no multivitamin use; moderate-to-severe depression; seen a mental health provider; and ever been told they had diabetes, hypertension, and asthma compared with women with only one disability (p < 0.05 for all comparisons).
In Poisson regression models (Table 3), the majority of observed disparities in preconception health indicators by disability status remained after adjustment for covariates. For women with any self-reported disabilities compared with those with no disabilities, adjusted prevalence ratios (aPRs) ranged from ∼1.1 to 2.0 for indicators of less than high school education, household income below 200% of the Federal Poverty Threshold, recent health care visit (≤1 year), no recent dental visit (>3 years), difficulty getting pregnant, current smoking, binge drinking, ever used illegal drugs, attended drug rehabilitation, obesity, no multivitamin use, physical inactivity, long sleep durations, hypertension, asthma, and sexually transmitted infections.
Unadjusted and Adjusted Prevalence Ratios for Preconception Health Indicators and Self-Reported Disability Status Among Women of Reproductive Age (18–44 years), National Health and Nutrition Examination Surveys, 2013–2018
Reference is women with no self-reported disabilities.
Adjusted models include age, race/ethnicity, education, marital status, and health insurance status.
Model not adjusted for education.
Model not adjusted for health insurance.
Defined as ≥150 minutes of moderate and vigorous physical activity per week.
Only included in NHANES 2013–2016.
Bonferroni-corrected p-value <0.0016.
CI, confidence interval; PR, prevalence ratio.
The greatest disparities between women with and without disabilities were observed for indicators of self-rated poor or fair general health, poor mental health, and diabetes, with aPRs ranging from ∼2.4 to 3.8. In models that compared categories of number of types of self-reported disabilities, aPRs were generally similar for women with only one type of disability and women with two or more types of disabilities when compared with women with no disabilities. Some exceptions were observed, with higher prevalence estimates for poor general and mental health, drug rehabilitation, and chronic medical conditions among women with two or more types of disabilities. In sensitivity analyses, we did not observe any differences in magnitude or precision of effect estimates after excluding women who were currently pregnant; therefore, we present models with the entire sample.
Discussion
Among a large, nationally representative sample of U.S. women of reproductive age, we found that 15% reported any disability, of which 6% reported having two or more types of disabilities. Disability status was associated with many suboptimal preconception health indicators. Compared with women with no disabilities, women with any self-reported disabilities were more likely to report poor or fair general health, lower education and household income status, no recent dental visit, difficulty getting pregnant, current smoking, binge drinking, drug use and rehabilitation, obesity, no multivitamin use, physical inactivity, long sleep durations, poor mental health, chronic medical conditions, and sexually transmitted infections.
Associations between disability status and preconception health indicators were generally similar when comparing women with only one type of disability and women with two or more types of disabilities with those with no disabilities; greater prevalence were observed for some indicators, including poor general and mental health, drug rehabilitation, and chronic medical conditions, among women with two or more types of disabilities.
Pregnant women with disabilities experience high rates of many complications, including infections and cesarean delivery, as well as poor birth, infant, and postpartum outcomes such as preterm birth, low birth weight, and extended postdelivery hospital stays. 16 –18 Although these adverse outcomes may, in part, be attributed to disability-specific medical complexities (e.g., spinal cord injuries), it is plausible that disparities in preconception health indicators also have contributing roles. 7,10,11 Poor self-rated general and mental health, chronic medical conditions, smoking, alcohol use, and physical inactivity are reported among women of reproductive age with disabilities. 7,10,11 They are also more likely to feel unsafe, 7 experience stressful life events, 7 and suffer from physical abuse, 25 and they are less likely to receive a regular Pap test. 10
Findings from the current study confirm and add to the existing literature, highlighting disparities related to substance use, oral health, sleep, sexual health, and fertility, particularly among women who reported two or more types of disabilities. Associations of disability and preconception health may also be compounded by factors related to social determinants of health.
In an analysis of the 2016 BRFSS, Horner-Johnson et al. found that the prevalence of several preconception health indicators varied by women's disability status and race/ethnicity. 10 Obesity and physical inactivity disparately affected non-Hispanic black women with disabilities compared with women with only one of these characteristics (i.e., black women without disabilities or white women with disabilities). Other indicators, such as current smoking, were lower among Hispanic women with disabilities compared with non-Hispanic white women with disabilities. 10
Reproductive health among women with disabilities remains understudied, particularly with respect to barriers that may lead to disparate outcomes. Social determinants of health, such as poverty, lower educational attainment, and discrimination, likely impact women's ability to seek and receive reproductive health care. Disability-based discrimination is prevalent among adolescents and young adults and has been associated poor self-rated health and psychological distress, especially among individuals with severe physical or intellectual impairments. 26 Research is needed to understand the intersection of these social factors and their influence on women's access to and utilization of health care, lifestyle behaviors, and health outcomes.
There is long-standing knowledge that poor physical and mental health during the reproductive years is predictive of short- and long-term consequences for women (and men) and their offspring. 2,27 Despite preconception care and health being included in national and organizational recommendations, such as the U.S. Healthy People objectives and the American Academy of Pediatrics/American College of Obstetricians and Gynecologists “Guidelines for Perinatal Care,” the health care community has traditionally prioritized prenatal and infant care over preconception care. 1,28 For women with disabilities, preconception care may further be disregarded by clinicians due to common misconceptions that these women do not engage in sexual activity or are unable or not intending to have children. 29
Interventions and policy efforts that target women during the immediate preconception period, such as increasing health care visits, preventative screenings, and counseling on lifestyle behaviors (e.g., physical activity, diet, and substance use), may help to reduce health disparities encountered by women with disabilities as well as other women affected by structural and societal inequities. However, preconception health is not solely reflective of health during the few months before pregnancy but comprises an accumulation of experiences and exposures from early life through adolescence. 3 Efforts made to improve preconception health, particularly among women with disabilities, should incorporate a life course approach addressing social, environmental, and medical-related issues well before the reproductive years. 3
Mitra et al. developed a perinatal health framework for women with physical disabilities, incorporating individual factors (e.g., demographic factors, health conditions), mediating factors (e.g., health care-related, psychosocial, social support factors), and environmental contexts (e.g., cultural norms, physical environment, laws/policies) confronted throughout the life span that contribute to maternal and infant health outcomes. 30 The framework identified specific needs and obstacles encountered by women with disabilities and can be used to facilitate efforts to enhance surveillance, research, interventions, and clinical practice. 30 An example of a recent enhancement made to U.S. maternal and infant health surveillance was the addition of the Washington Group disability questions to PRAMS in 2019.
These questions take ∼90 seconds to complete and assess both disability type and severity, allowing researchers to investigate a range of factors affecting women with disabilities before, during, and after pregnancy. 31 Although the Department of Health and Human Services adopted data collection standards on disability status for use in national population health surveys beginning in 2011 (based on section 4302 of the Affordable Care Act), reaching full compliance has been slow. 32 In addition to national and federally funded surveillance, it should become common practice to include questions about disability status in reproductive, maternal, and child health surveys and assessments, as well as other epidemiological studies (e.g., birth cohorts), when applicable.
Other strategies to reduce health disparities among women with disabilities center on improving their interactions within the health care system. Currently, most health care organizations do not systematically document patients' disability status, limiting organizations' ability to provide suitable accommodations and track quality of care and health care needs. 33,34 Routine assessment of type and severity of functional limitations, especially since women may have several types of limitations, should be included with general clinical care and the electronic health record system. Clinicians and other practitioners also require structured training about how to deliver appropriate preventive screenings, medical care, and counseling to all individuals with disabilities. 35
Women with disabilities may need to interact with numerous types of providers regarding issues related to, for example, mental health, physical therapy, fertility, chronic medical conditions, and substance/drug use. Disability competencies have been developed and should be added to educational curricula for all types of health care practitioners (e.g., clinicians, social workers, and public health administrators) and policy makers. 36 –38 Addressing these issues could have a substantial impact on fostering trusting relationships between women with disabilities and their health care providers and improving women's health from an early age.
Strengths of this study include the use of data from a nationally representative sample of women of reproductive age in the U.S.
Data collection included detailed information on many important indicators identified by the 2007 Working Group. We examined these indicators by number of reported disabilities (none, one type of disability, and two or more types of disabilities). Limitations include the cross-sectional study design and reliance on self-reported information for the majority of study variables. Questions on disability status were not discerning regarding specific cause or severity of disability.
In NHANES, participants were only queried about having serious difficulty with functional domains (yes or no), which differs from the Washington Group questions that ask about level of severity (no difficulty, some difficulty, a lot of difficulty, cannot do at all). Questions regarding sensory disabilities did not differentiate between subgroups; for example, there may be important differences between individuals who identify as deaf compared with those who identify as having serious difficulty hearing. 39 We were also limited by sample size and may have been underpowered to detect associations for disability status when categorized by number of types of disabilities. Additionally, we were unable to examine associations of disability and preconceptional health stratified by specific type of disability or other important socioeconomic factors.
Conclusions
We leveraged recent data from a nationally representative sample of women of reproductive age and found that women with disabilities reported suboptimal health for the majority of preconception health indicators compared with women without disabilities. Further investigation is required to understand how social determinants of health contribute to these disparities. Preventive strategies to improve reproductive health among women with disabilities include adequate access to health care, interventions targeting lifestyle and health behaviors, and education and training programs for all health practitioners.
Authors Disclosure Statement
No competing financial interests exist.
Funding Information
This project was supported in whole by a grant from the New York University Research Challenge Fund Program.
