Abstract
This population-based retrospective cohort study examines the prevalence of hospital utilization during pregnancy and the primary reason for antenatal hospital utilization among women with intellectual and developmental disabilities (IDD). Massachusetts residents with in-state deliveries that were ≥ 20 weeks gestational age were included via data from the 2002–2009 Massachusetts Pregnancy to Early Life Longitudinal Data System. Among women with IDD, 54.8% had at least one emergency department (ED) visit during pregnancy, compared to 23% of women without IDD. Women with IDD were more likely to have an antenatal ED visit, observational stays, and non-delivery hospital stays. This study highlights the need for further understanding of the health care needs of women with IDD during pregnancy.
Keywords: hospitalization, perinatal care, people with a disability, pregnancy
Abstract
Cette étude de cohorte rétrospective basée sur la population examine la prévalence de l’utilisation des soins hospitaliers durant la grossesse et la principale raison de l’utilisation des soins prénataux chez les femmes ayant une déficience intellectuelle (DI). Les résidentes du Massachusetts ayant leur accouchement dans cet état, et dont l’âge gestationnel était égal ou supérieur à 20 semaines ont été incluses dans les données de 2002–2009 du Système de données longitudinales de la grossesse au début de vie du Massachusetts (Massachusetts Pregnancy to Early Life Longitudinal Data System). Parmi les femmes ayant une DI, 54,8 % ont eu au moins une visite a l’urgence durant la grossesse, comparativement à 23 % pour les femmes sans DI. Les femmes ayant une DI étaient plus susceptibles de faire une visite prénatale à l’urgence, d’être en observation et d’être hospitalisées. Cette étude met en lumière la nécessité de mieux comprendre les besoins en soins de santé des femmes ayant une DI durant la grossesse.
Abstract
Este estudio de cohortes retrospectivo basado en la población examina la prevalencia de la utilización hospitalaria durante el embarazo y la razón principal de la utilización hospitalaria prenatal entre las mujeres con discapacidades intelectuales y del desarrollo (DID). Los residentes de Massachusetts con partos en el estado que tenían ≥ 20 semanas de edad gestacional se incluyeron a través de datos del Massachusetts 2002–2009. Sistema de datos longitudinales de preñez a embarazo. Entre las mujeres con DID, el 54.8% tuvo al menos una visita al departamento de emergencia (DE) durante el embarazo, en comparación con el 23% de las mujeres sin DID. Las mujeres con DID tenían más probabilidades de tener una visita prenatal del DE, estancias de observación y estadías en el hospital sin entrega. Este estudio destaca la necesidad de una mayor comprensión de las necesidades de atención médica de las mujeres con DID durante el embarazo.
Within the last decade, there has been a surge of interest in the perinatal health of women with intellectual and developmental disabilities (IDD). This growing body of research includes examinations of fertility rates, pregnancy complications, prenatal care access, birth outcomes, and postpartum healthcare utilization among women with IDD (Brown, Cobigo, Lunsky, & Vigod, 2017; Brown, Kirkham, Cobigo, Lunsky, & Vigod, 2016; Brown, Lunsky, Wilton, Cobigo, & Vigod, 2016; Goldacre, Gray, & Goldacre, 2015; Greenwood & Wilkinson, 2013; Hoglund, Lindgren, & Larsson, 2012a, 2012b; McConnell, Mayes, & Llewellyn, 2008; Mitra, Parish, Akobirshoev, & Moore Simas, 2017; Mitra, Parish, Clements, Cui, & Diop, 2015; Parish et al., 2015; Potvin, Brown, & Cobigo, 2016). Using population-based data, Brown, Cobigo, Lunsky, & Vigod (2016) found clinically significant differences in the general fertility rates between women with and without IDD but comparable age-specific fertility rates among 18 to 24 year olds between the two groups of women. Significant differences in the maternal characteristics have also been documented. Compared to women without IDD, expectant women with IDD were younger, were less likely to be married, had lower levels of education, and were more likely to have public insurance and to smoke during pregnancy (Goldacre et al., 2015; Höglund et al., 2012b; Mitra et al., 2015; Parish et al., 2015). Note that while this study uses the term “IDD,” when discussing other literature, the terms specific to that particular study are used (i.e., “ID,” “DD,” etc.).
Examinations of medical complications experienced during pregnancy also revealed significant disparities between women with and without ID (Höglund et al., 2012b; McConnell et al., 2008). Brown, Cobigo, Lunsky, and Vigod (2016) found that women with IDD were at increased risk for a number of complications during pregnancy including preeclampsia, venous thromboembolism, and peripartum hemorrhage. Similarly, using national hospital utilization data from the United States, Parish et al. (2015) reported that women with IDD were at higher risk of early or threatened labor and preeclampsia or hypertensive complications.
Several population-based studies have examined the birth outcomes of women with IDD in comparison to those without IDD. Findings from these studies suggest that women with IDD were at higher risk of adverse birth outcomes including preterm delivery, very low and low birth weight babies, and low Apgar scores (Brown, Cobigo, Lunsky, & Vigod, 2016; Höglund et al., 2012a, 2012b; Mitra et al., 2015; Parish et al., 2015). Using population-based, linked longitudinal data Mitra and colleagues (2015) found that women with IDD were more likely to have cesarean deliveries and longer delivery-related hospital stays and were less likely to breastfeed at the time of their discharge from the hospital (Mitra et al., 2015). In an investigation of hospital utilization using linked population-based health and social service administrative data from Ontario, Canada, Brown, Cobigo, Lunsky, & Vigod (2016) found higher rates of postpartum hospital admissions and emergency department visits among women with IDD, and a significantly elevated risk of hospital utilizations for psychiatric reasons as compared to medical reasons among women with IDD compared to women without IDD. Given the higher rates of pregnancy complications, adverse birth outcomes, and postpartum hospital utilization among women with IDD, Mitra (2017), in a recent editorial, called for action to include women with IDD in the national and global efforts to improve the health and wellness of new mothers and infants.
To our knowledge, however, there are no studies examining the prevalence of and the primary reasons for antenatal hospital utilization in a population-based sample of U.S. women with IDD. In this study, we advance earlier research by using a longitudinally linked population-based administrative dataset to examine differences in hospital utilization during pregnancy between women with and without IDD. We also examine the distribution of the number of hospital visits during pregnancy and the primary reason for such hospitalizations of women with and without IDD. We hypothesize that women with IDD are likely to have higher and longer non-delivery antenatal hospital utilization compared to women without IDD.
Methods
Data Source
Data from the Massachusetts Pregnancy to Early Life Longitudinal Data System (PELL) were analyzed. PELL longitudinally links all Massachusetts deliveries with delivery-related hospital discharge records, death certificates of all children and their mothers, and non-birth hospital discharge records (inpatient visits, observational stays, and emergency room records) for the mother and child. More than 99% of births are linked to their hospital discharge delivery records. The data are stripped of identifying information prior to analysis. Deterministic and probabilistic methodologies were used to link records from the various data sets. Details about the PELL data set can be found elsewhere (Barfield et al., 2008; Clements, Barfield, Kotelchuck, Lee, & Wilber, 2006). This study used PELL data from January 1, 2002 to December 31, 2009 and includes women who had deliveries during 2003–2009; some women who delivered in 2003 may have had antenatal visits in 2002.
Study Population
The study population included Massachusetts residents with in-state deliveries during 2003–2009 that were 20 or more weeks gestational age that resulted in a newborn or fetal demise weighing equal to or greater than 350 grams. Data from 2002 are included to ensure all antenatal hospital discharge records were captured for deliveries that were included in the study. Using data both from non-delivery antenatal hospitalizations and delivery hospitalizations available in PELL, we identified women with IDD using specific ICD-9-CM codes for Down syndrome, mental retardation, autism, and other related conditions (See Table 1). Details on the specific ICD-9-CM codes and related study methodology are available elsewhere (Mitra et al., 2015; Parish et al., 2015). Because less than 1% of total deliveries during this period were to women with IDD, we identified a comparison group from all women without IDD. The comparison group consisted of three women without IDD for each woman with IDD matching on delivery year, age at delivery, gestational plurality, and birth parity to make our analysis more comparable between women with and without IDD. The sample was restricted to the first deliveries of mothers in the PELL dataset to avoid the complexity of the time overlapping between the postpartum period from one delivery and antenatal period from a subsequent delivery.
Table 1.
Classification of Intellectual and Developmental Disabilities Using ICD-9b Codes
| Intellectual and developmental disabilities | ICD-9 codes | n by unique women (N = 498) |
|---|---|---|
| Mild Mental Retardation | 317 | 175 |
| Moderate Mental Retardation | 318.0 | a |
| Severe Mental Retardation | 318.1 | 0 |
| Profound Mental Retardation | 318.2 | 0 |
| Unspecified Mental Retardation | 319 | 103 |
| Fragile X Syndrome | 759.83 | a |
| Prader-Willi Syndrome | 759.81 | a |
| Down Syndrome | 758.0 | 14 |
| Rett Syndrome | 330.8 | 0 |
| Lesch Nyhan | 277.2 | a |
| Cri du Chat | 758.31 | 0 |
| Autistic Disorder | 299.0, 299.01, 299.02 | a |
| Childhood Disintegrative Disorder | 299.1, 299.10, 299.11 | 0 |
| Other Specified Pervasive Developmental Disorder | 299.8, 299.80, 299.81 | 21 |
| Unspecified Pervasive Developmental Disorder | 299.9, 299.90, 299.91 | a |
| Tuberous Sclerosis | 759.5 | 12 |
| Fetal Alcohol Syndrome | 760.1 | a |
| Cerebral Palsy Athetoid | 333.71 | 0 |
| Cerebral Palsy Diplegic | 343.0 | a |
| Cerebral Palsy Hemiplegic | 343.1 | a |
| Cerebral Palsy Quadriplegic | 343.2 | a |
| Cerebral Palsy Monoplegic | 343.3 | a |
| Cerebral Palsy Spastic | 343.9 | 92 |
| Other Cerebral Palsy | 343.4, 343.8 | a |
| Cerebral Palsy Spastic Non-Congenital Non-Infantile | 344.89 | 18 |
Numbers < 11 suppressed to protect confidentiality.
International Statistical Classification of Diseases and Related Health Problems.
Measures
Maternal social demographic characteristics at the time of delivery, adequacy of prenatal care, pregnancy risk factors, and complications during pregnancy were derived from the birth certificate. They included maternal age; education; race/ethnicity; marital status; health insurance; father named on the birth certificate; Adequacy of Prenatal Care Utilization (APNCU) Index (Kotelchuk, 1994); smoking during pregnancy; diabetes (including both gestational and chronic), hypertension (including both pregnancy-related and chronic), and other medical complications. Other complications were derived from the birth certificate. They are medical complications that were diagnosed either during pregnancy or delivery. Other complications included the following: cardiac disease, hydramnios/oligohydramnios, hemoglobinopathy, renal disease, RH sensitization, rubella infection during pregnancy, seizure disorders, sickle cell anemia, uterine bleeding, and weight gain/loss inappropriate for mother. Because the prevalence of other complications recorded on the birth certificate were too few to examine individually, these were combined into one category of “other complications.” Mental illness was identified from delivery and non-delivery antenatal hospitalization discharge data available in PELL, using specific ICD-9-CM codes for mental illness (excluding codes used to identify IDD) from the multilevel classes of the Clinical Classification Software (CCS).
Antenatal Hospital Utilization
Antenatal hospital utilization was categorized as any emergency department (ED) visit, observational stay, or inpatient hospital stay during the antenatal period which was estimated by using gestational age subtracted from date of birth or fetal death. We examined the percentage of women with and without IDD who had one or more ED visits, observational stays, and non-delivery inpatient hospital stays, as well as the number of visits in each category. For inpatient hospitalization, we examined the length of stay. To examine the primary reason for hospital visits, we categorized the ICD-9-CM code for the primary diagnosis of each visit using the multilevel classes of the Clinical Classification Software (CCS). This software was developed for the Healthcare Cost and Utilization Project (HCUP) and is sponsored by the Agency for Healthcare Research and Quality (Elixhauser, Steiner, Whittington, & McCarthy, 1995). The CCS groups more than 14,000 ICD-9-CM diagnosis codes and 3,900 procedure codes into a smaller number of clinically meaningful categories. We categorized women based on the first level of the four levels of diagnosis classification, which groups diagnoses into 18 broad body systems or condition categories. For this study, the most frequent CCS categories for women with and without IDD were reported.
Statistical Analyses
Bivariate analyses were conducted to compare selected maternal characteristics between women with and without IDD. Chi-square statistics were used to compare the distribution of ED visits, observational stays, and non-delivery hospital stays between the two groups of women. The Mann-Whitney-Wilcoxon test (Moses, 2005) was used to compare the median length of non-delivery hospital stay between the two groups of women. A stratified analysis by adequate/adequate plus and intermediate/inadequate prenatal care was conducted to further examine the relationship between prenatal care utilization and antenatal hospital visits between the two groups of women. Chi-square tests were used to compare women with and without IDD in terms of the primary reason for ED visits, using the CCS categories. Due to relatively small numbers, the primary reasons for observational and hospital stays are not reported.
To estimate the unadjusted odds ratios (OR) for hospital utilization between women with and without IDD, we used logistic regression models with one independent variable, IDD (yes/no). The adjusted odds ratios were estimated by using multivariable logistic regression models, and controlled for age, marital status, race/ethnicity, education, public insurance, paternity establishment, smoking status, prenatal care adequacy, pregnancy complications, and mental illness. Mental illness was separated into major mental illness which included schizophrenia, bipolar, depression and anxiety, and other mental illness which included adjustment disorder, personality disorder, and others. The two outcome variables for hospital utilization were: (1) antenatal ED visit (yes/no), and (2) a combined antenatal non-delivery observational and/or hospital stay (yes/no) variable. Due to low cell counts, observational stay and hospital stay were combined into one variable. The analyses were conducted using the statistical software SAS, version 9.3 (SAS Institute Inc., Cary NC). This study was approved by the authors’ respective institutional review boards.
Results
After performing a 1:3 exact match on delivery year, age at delivery, plurality, and parity for women with and without IDD who gave birth during calendar years 2003–2009, 498 women with IDD and 1,531 women without IDD who had their first delivery during this study period were identified.
Maternal Characteristics
Women with IDD were less educated (X2 = 100.54, p < 0.001), more likely to be Non-Hispanic Black (X2 = 14.65, p = 0.002), more likely to have public insurance coverage (X2 = 155.49, p < 0.001), and less likely to be married than women without IDD (X2 = 70.06, p < 0.001). Women with IDD were less likely to have named their infant’s father on the birth certificate (X2 = 97.95, p < 0.001) and more likely to have inadequate prenatal care utilization (X2 = 27.56, p < 0.001). Women with IDD, compared to those without IDD, were more likely to have hypertension (X2 = 4.62, p < 0.032), major mental illness (X2 = 217.32, p < 0.001), and other mental illness (X2 = 337.25, p < 0.001). Because women with and without IDD were matched on age, the results showed that there was no significant difference in age between the two groups (see Table 2).
Table 2.
Characteristics of Study Population, 2002–2009 Massachusetts Pregnancy to Early Life Longitudinal Data System
| Characteristics | IDD n = 498 n (%) |
No IDD n = 1,531 n (%) |
Test statistic χ2 | p-value |
|---|---|---|---|---|
| Age | 0.45 | 0.930 | ||
| < 20 | 75 (15.1) | 225 (14.7 | ||
| 20–29 | 256 (51.4) | 810 (52.9) | ||
| 30–39 | 149 (29.9) | 438 (28.6) | ||
| 40+ | 18 (3.6) | 58 (3.8) | ||
| Education | 100.54 | <0.001 | ||
| Less than high school | 147 (29.6) | 293 (19.2) | ||
| High school graduate | 230 (46.3) | 474 (31.0) | ||
| Some or more college | 120 (24.1) | 761 (49.8) | ||
| Maternal race/ethnicity | 14.65 | 0.002 | ||
| Hispanic | 99 (19.9) | 318 (20.8) | ||
| Non-Hispanic White | 317 (63.7) | 942 (61.5) | ||
| Non-Hispanic Black | 71 (14.3) | 175 (11.4) | ||
| Other | 11 (2.2) | 96 (6.3) | ||
| Marital Status (% married) | 151 (30.3) | 792 (51.9) | 70.06 | <0.001 |
| Public health insurance | 388 (78.7) | 708 (46.5) | 155.49 | <0.001 |
| Other Characteristics | ||||
| Father named on birth certificate | 337 (67.7) | 1,334 (87.1) | 97.95 | <0.001 |
| Smoking during pregnancy | 92 (18.6) | 145 (9.5) | 29.78 | <0.001 |
| Prenatal care 1st trimester | 332 (67.6) | 1,138 (74.9) | 9.92 | 0.002 |
| Prenatal care utilization index | 27.56 | <0.001 | ||
| Inadequate | 92 (18.7) | 168 (11.1) | ||
| Intermediate | 34 (6.9) | 120 (7.9) | ||
| Adequate | 162 (32.9) | 652 (43.0) | ||
| Adequate plus | 204 (41.5) | 577 (38.0) | ||
| Pregnancy complications | ||||
| Diabetes | 25 (5.8) | 56 (3.7) | 1.89 | 0.170 |
| Hypertension | 25 (5.8) | 46 (3.0) | 4.62 | 0.032 |
| Other pregnancy complication | 342 (70.4) | 742 (48.9) | 68.26 | <0.001 |
| Mental illness | ||||
| Major Mental illness | 129 (25.9) | 59 (3.9) | 217.32 | <0.001 |
| Other mental illness | 105 (37.2) | 80 (5.2) | 337.25 | <0.001 |
Note. IDD = intellectual and developmental disabilities.
Antenatal Hospital Utilization
Antenatal hospitalizations including emergency department (ED) visits, observational stays, and non-delivery inpatient hospital stays, were significantly higher among women with IDD compared to women without IDD (Table 3). Among women with IDD, 56% had at least one ED visit, 31% had an observational stay, and 18% had a non-delivery hospital stay during pregnancy compared to 29%, 17%, and 4% among women without IDD. For women with IDD, 43.8%, 40.3%, and 15.9% of the ED visits were in the first, second, and third trimesters respectively. Among women without IDD, 45.2%, 39.1%, and 15.7% of the ED visits were in the first, second, and third trimesters respectively. The distribution of ED visits in first, second, and third trimesters shows no statistically significant difference between women with and without IDD. The median length of non-delivery hospital stay was 3.5 days for women with IDD and 2.0 days for women without IDD (T = 4594, p = 0.004).
Table 3.
Antenatal Hospital Utilization, by IDD Status, 2002–2009 Massachusetts Pregnancy to Early Life Longitudinal Data System
| Type of visit | IDD n = 498 |
No IDD n = 1,531 |
Test statistic t or χ2 | p-value |
|---|---|---|---|---|
| Emergency department visits | ||||
| Any, n (%) | 279 (56.0) | 444 (29.0) | 119.64 | <0.001 |
| Distribution of visits | 203.84 | <0.001 | ||
| 1 | 93 (18.7) | 256 (16.7) | ||
| 2–3 | 101 (20.3) | 147 (9.6) | ||
| 4+ | 85 (17.1) | 41 (2.7) | ||
| Observational stay | ||||
| Any, n (%) | 154 (30.9) | 260 (17.0) | 44.97 | <0.001 |
| Distribution of visits | 53.33 | <0.001 | ||
| 1 | 81 (16.3) | 170 (11.1) | ||
| 2+ | 73 (14.7) | 90 (5.9) | ||
| Non-delivery hospital stay | ||||
| Any, n (%) | 90 (18.1) | 68 (4.4) | 97.23 | <0.001 |
| Distribution of visits | 99.60 | <0.001 | ||
| 1 | 66 (13.3) | 56 (3.7) | ||
| 2+ | 24 (4.8) | 12 (0.8) | ||
| Length of stay (days) | ||||
| Average | 8.9 (SD = 15.7) | 3.6 (SD=4.4) | T = 3.02 | 0.003 |
| Mediana | 3.5 | 2.0 | 4594 | 0.004 |
Note. IDD = intellectual and developmental disabilities.
Wilcoxon rank sum (Mann-Whitney test).
Table 4 presents the association between adequacy of prenatal care utilization and hospital utilization between women with and without IDD. A greater percentage of women with IDD had an ED visit (X2 = 90.56, 27.64, p < 0.001), observational stay (X2 = 37.44, 10.72, p < 0.001) and non-delivery hospital stay (X2 = 72.51, 24.23, p < 0.001) during pregnancy, irrespective of whether they had adequate/adequate plus or inadequate/intermediate prenatal care.
Table 4.
IDD Status, Adequacy of Prenatal Care And Hospital Utilization, 2002–2009 Massachusetts Pregnancy to Early Life Longitudinal Data System
| Adequate/Adequate Plus Prenatal Care | Inadequate/Intermediate Prenatal Care | |||||||
|---|---|---|---|---|---|---|---|---|
| Type of Visit | IDD n=366 n (%) |
No IDD n=1229 n (%) |
Test statistic χ2 |
p-value | IDD n=126 n (%) |
No IDD n=288 n (%) |
Test statistic χ2 |
p-value |
| Emergency Department Visits | 204 (55.7) | 353 (28.7) | 90.56 | <0.001 | 72 (57.1) | 86 (29.9) | 27.64 | <0.001 |
| Observational Stay | 119 (32.5) | 217 (17.7) | 37.44 | <0.001 | 35 (27.8) | 41 (14.2) | 10.72 | 0.001 |
| Non-delivery Hospital Stay | 66 (18.0) | 56 (4.6) | 72.51 | <0.001 | 23 (18.3) | 11 (3.8) | 24.23 | <0.001 |
Note. IDD = intellectual and developmental disabilities.
Table 5 presents the leading medical conditions associated with ED visits among women with and without IDD. Complications of pregnancy, childbirth, and puerperium was the leading CCS category of conditions associated with ED visits for both groups of women. However the proportion of ED visits associated with complications of pregnancy, childbirth, and puerperium was lower among women with IDD compared to women without IDD. Conditions related to mental illness were among the top five categories of conditions associated with antenatal ED visits for women with IDD and comprised a higher proportion of their ED visits in contrast to women without IDD (11.0% vs. <1%).
Table 5.
Leading Diagnoses Related to Emergency Department (ED) Visits by IDD status, 2002–2009 Massachusetts Pregnancy to Early Life Longitudinal Data System
| ED visits among women with IDD (n=946) n (%) |
ED visits among women without IDD (n=815) n (%) |
||
|---|---|---|---|
| ED visit | |||
| Complications of pregnancy; childbirth; and the puerperium | 417 (44.1) | Complications of pregnancy; childbirth; and the puerperium | 422 (51.8) |
| Mental illness | 104 (11.0) | Symptoms; signs; and ill-defined conditions and factors influencing health outcomes | 87 (10.7) |
| Symptoms; signs; and ill-defined conditions and factors influencing health outcomesa | 95 (10.0) | Injury and poisoning | 80 (9.8) |
| Injury and poisoning | 87 (9.2) | Diseases of the respiratory system | 52 (6.4) |
| Diseases of the respiratory system | 53 (5.6) | Diseases of the digestive system | 34 (4.2) |
Note. ED = emergency department; IDD = intellectual and developmental disabilities.
Symptoms, signs and ill-defined conditions (ICD-9-CM codes 780–799) includes cases for which no more specific diagnosis can be made; signs or symptoms proved to be transient and of indeterminate cause; provisional diagnoses in a patient who failed to return for further investigation or care; cases referred elsewhere for investigation or treatment before diagnosis; and other cases for which no diagnosis classifiable elsewhere is recorded.
Table 6 presents the unadjusted and adjusted odds ratios between IDD status and antenatal hospital visits. Women with IDD were significantly more likely (R2 = 0.08, C = 4.0) 0.61, OR 3.2, 95% CI, 2.6, to have an antenatal ED visit compared to women without IDD. Controlling for age, race/ethnicity, marital status, education, insurance status, smoking status, adequacy of prenatal care, pregnancy complications, and mental illness, women with IDD were 2.2 times more likely (R2 = 0.23, C = 0.74, 95% CI, 1.7–2.8) to have at least one antenatal ED visit compared to women without IDD. Similarly, women with IDD were significantly more likely (R2 = 0.05, C = 0.60, OR 2.8, 95% CI, 2.3, 3.5) to have a non-delivery observational or hospital stay than women without IDD. After controlling for covariates, women with IDD were 2.3 times more likely (R2 = 0.10, C = 0.67, 95% CI, 1.7–2.9) to have a non-delivery observational or hospital stay than women without IDD.
Table 6.
Association Between IDD Status and Antenatal Hospital Visits Among Women in Massachusetts, 2002–2009 Massachusetts Pregnancy to Early Life Longitudinal Data System
| Characteristics | Any antenatal emergency department visits | Any antenatal non-delivery stay or observational stay | ||
|---|---|---|---|---|
| Unadjusted OR | Adjusted OR | Unadjusted OR | Adjusted OR | |
| IDD | 3.2 (2.6–4.0) | 2.2 (1.7–2.8) | 2.8 (2.3–3.5) | 2.3 (1.7–2.9) |
| Age | ||||
| <20 | 1.1 (0.8 −1.4) | 1.3 (0.9 −1.8) | ||
| 20–29 | 1.0 | 1.0 | ||
| 30–39 | 0.6 (0.5–0.8) | 0.7 (0.5–0.9) | ||
| 40+ | 0.5 (0.3–0.9) | 0.5 (0.3–1.1) | ||
| Marital status | ||||
| Married | 0.6 (0.4–0.7) | 0.9 (0.7–1.2) | ||
| Others | 1.0 | 1.0 | ||
| Race | ||||
| Non-Hispanic White | 1.0 | 1.0 | ||
| Hispanic | 1.2 (0.9–1.5) | 0.9 (0.6–1.1) | ||
| Non-Hispanic Black | 1.0 (0.7–1.4) | 0.8 (0.6–1.2) | ||
| Other | 0.3 (0.2–0.6) | 0.6 (0.3–1.0) | ||
| Education | ||||
| Less than high school | 0.8 (0.6–1.1) | 1.0 (0.7–1.3) | ||
| High school graduate | 1.0 | 1.0 | ||
| Some college | 0.8 (0.6–1.1) | 0.9 (0.7–1.2) | ||
| Insurance | ||||
| Public | 1.4 (1.11.8) | 1.0 (0.7–1.3) | ||
| Other | 1.0 | 1.0 | ||
| Father named on birth certificate | ||||
| Yes | 1.0 | 1.0 | ||
| No | 1.1 (0.8–1.5) | 1.1 (0.8–1.5) | ||
| Any smoking during pregnancy | 1.3 (0.9–1.8) | 1.3 (1.0–1.8) | ||
| Prenatal care | ||||
| Adequate/Adequate plus | 1.2 (1.0–1.6) | 1.4 (1.0–1.8) | ||
| Less than adequate | 1.0 | 1.0 | ||
| Chronic conditions | ||||
| Diabetes | 0.8 (0.4–1.4) | 1.1 (0.6–1.9) | ||
| Without Diabetes | 1.0 | 1.0 | ||
| Hypertension | 1.1 (0.6–1.8) | 1.5 (0.9–2.7) | ||
| Without hypertension | 1.0 | 1.0 | ||
| Other pregnancy complications | 1.1 (0.9–1.4) | 1.1 (0.9–1.4) | ||
| Without other pregnancy complications | 1.0 | 1.0 | ||
| Major mental illness | 4.7 (2.9–7.5) | 2.3 (1.4–3.5) | ||
| Without major mental illness | 1.0 | 1.0 | ||
| Other mental illness | 0.7 (0.5–1.1) | 0.78 (0.5–1.2) | ||
| Without other mental illness | 1.0 | 1.0 | ||
| R 2 | 0.08 | 0.23 | 0.05 | 0.10 |
| C statistics | 0.61 | 0.74 | 0.60 | 0.67 |
Note. IDD = intellectual and developmental disabilities.
Discussion
Main Findings
Women with IDD were more likely to have antenatal hospital utilization, including observational stays, ED visits, and non-delivery hospital stays, compared to women without IDD. The proportion of ED visits associated with complications of pregnancy, childbirth, and puerperium was lower among women with IDD and conditions related to mental illness comprised a higher proportion of their ED visits in contrast to women without IDD. Consistent with our hypothesis, women with IDD had longer non-delivery hospital stays compared to other women.
Strengths and Limitations
To our knowledge, this is the first study of antenatal hospital utilization among women with IDD. Other strengths of the study include the use of a longitudinal, linked, population-based dataset to identify women with IDD and examine their risk for hospitalization during pregnancy.
One limitation of this study is that the data are derived from birth certificates and hospital discharge records. It was not possible to clinically verify the accuracy of the codes in this study; some data could be either miscoded or absent, thus there is potential misidentification of women with IDD. It is possible that some women with IDD who gave birth in Massachusetts were not identified and included in the dataset because their ICD-9 codes were not entered into their records. As such, the findings are conservative, and it is likely that they underestimate the number of births to women with IDD. Although these data represent the entire population of Massachusetts women who delivered between 2003–2009, the findings may not generalize to women living in other states. The study also did not include spontaneous first trimester or elective abortions as Massachusetts law does not require the reporting of fetal deaths < 20 weeks or birth weight < 350 grams. This study did not examine pre-pregnancy ED visits and hospitalizations. Therefore it is possible that women with IDD have higher rates of hospital utilization in general, which may or may not be specific to their pregnancy. Approximately 24% of women in this study sample had some postsecondary education. In comparison, a study by Powell and colleagues examining national data from the Fragile Families and Child Wellbeing Study found about 13% of mothers with intellectual impairments completed some or more college (Powell, Parish, & Akobirshoev, 2017), substantially lower than this study. Sannicandro (2016) found that in 2013, 5.5% of people ages 16 to 30 in the United States with ID were enrolled in postsecondary education (up from 4.1% in 2008). The higher educational attainment in this study sample is potentially explained by two factors. First, this study includes people with developmental disabilities without intellectual disabilities, who may be more likely to attain higher education (Sannicandro, 2016). Second, Massachusetts has long-standing, robust programs designed to increase higher education opportunities for people with IDD (Grigal, Hart, Smith, Domin, & Weir, 2015; Sannicandro, 2016). Therefore, the findings of this study may not reflect the experiences of the general population of U.S. women with IDD with fewer educational opportunities.
Women with IDD are a heterogeneous group and that heterogeneity might contribute to variability in the likelihood of antenatal hospital utilization. Additional research should also consider the extent to which a women’s living situation (living with family members or independently) and the level of social support are associated with her risk for antenatal hospitalization. In earlier studies, women with IDD living at home with family caregivers have tended to have worse healthcare access than women living in paid residential settings (Bershadsky et al., 2012; Lewis, Lewis, Leake, King, & Lindemann, 2002).
Interpretation
These findings add to the emerging body of research on pregnancy complications and outcomes among women with IDD. Previous research studies indicate that deliveries to women with IDD had markedly worse outcomes in contrast to deliveries among women without IDD and were more likely to experience medical complications including preeclampsia and gestational diabetes during their pregnancy (Brown, Cobigo, Lunsky, & Vigod, 2016; McConnell et al., 2008). Using national data, Mitra et al. (2015) reported that women with IDD in the United States were at a greater risk of adverse pregnancy complications and outcomes after adjusting for maternal demographic characteristics. Earlier studies also found that deliveries to women with IDD were to mothers who were less likely to receive adequate prenatal care and were more likely to have adverse birth outcomes compared to women without IDD (Parish et al., 2015).
Maternal morbidity, as measured by antenatal hospital utilization in this study, is a significant public health problem and represents a substantial burden to women of reproductive age and to society (Bacak, Callaghan, Dietz, & Crouse, 2005). Findings from this study indicate that women with IDD are at greater risk for maternal morbidity as measured by more frequent hospital visits, and longer non-delivery hospital stays for antenatal hospitalization. Even after controlling for demographic characteristics, and other risk factors including smoking during pregnancy, pregnancy complications, paternity establishment, and prenatal care utilization, women with IDD were more likely to have antenatal ED visits and observational/hospital stays compared to other women.
Some antenatal hospital visits are essential and possibly life-saving, however, many of these visits are likely preventable and represent a failure to provide appropriate preventive care to the woman. This study did not find an association between adequacy of prenatal care utilization and antenatal hospital visits among women with IDD. Nonetheless, for both groups of women the most common leading cause for ED visits were conditions related to pregnancy, childbirth, and puerperium, which potentially could be addressed during prenatal care visits. Prenatal care adequacy in this study was measured by the Adequacy of Prenatal Care Utilization Index (APNCU) which is based on the number and timing of the prenatal care visits (Kotelchuk, 1994). This measure does not account for the content, comprehensiveness, accessibility, or quality of the prenatal care provided. The accessibility, quality, and content of prenatal care are particularly salient factors for women with IDD who face multiple challenges in accessing and in interacting with healthcare practitioners. These barriers include communication difficulties with healthcare providers and potentially stigmatizing perceptions of pregnancy among women with IDD from healthcare providers (Greenwood & Wilkinson, 2013; Ouellette-Kunz, 2005). In addition, clinicians lack training to provide care to women with IDD and the American Congress of Obstetrics and Gynecology does not have prenatal guidelines specific to women with IDD (Mitra, 2017). Additionally, information about pregnancy and childbirth is generally not accessible to women with IDD (Potvin et al., 2016). As a result, women with IDD may have difficulty understanding the signs of false labor, pregnancy complications, and other forms of complications during pregnancy. This lack of understanding may preclude them from seeking preventive and timely health care. Collectively these barriers could prevent women from receiving appropriate preventive care and from seeking follow-up care. In addition, as noted by Alexander and Kotelchuck (2001), the benefits and needs of prenatal care may be different for different groups of women. Further exploration is needed to operationalize what constitutes “adequate” prenatal care for women with IDD.
Another notable finding of this study is the strikingly higher proportion of antenatal ED visits associated with mental illness to women with IDD compared to other women. This finding adds evidence to earlier studies on the co-occurrence of IDD and mental illness. Approximately half of women with IDD in a British study had a co-occurring diagnosis of mental illness (Cooper, Smiley, Morrison, Williamson, & Allan, 2007). In a recent study on pregnancy among Canadian women with IDD, Brown, Cobigo, Lunsky, Dennis, & Vigod, (2016) found that half of the women with IDD had a pre-pregnancy mental health diagnosis. Women with IDD also have high rates of medication use, including multiple psychotropic medications during their pregnancy (Brown, Cobigo, Lunsky, Dennis, & Vigod, 2016). Furthermore, women with IDD generally receive little emotional or social support during their pregnancies and often have restricted social networks with few friendships outside of family and formal caregivers (Lunsky & Benson, 1999; Potvin et al., 2016). The present findings, in addition to those from earlier studies, strongly suggest the need for intensive formal and informal support, including targeted supports to address the mental health needs of women with IDD during pregnancy.
Conclusion
Women with IDD in this study were less educated, more likely to be Non-Hispanic Black, more likely to have public insurance coverage, and less likely to be married than women without IDD. They were also more likely to have medical complications during pregnancy. All of these characteristics, in addition to their increased risk for antenatal hospital utilization highlight the need for more intensive and accessible prenatal care as well as other forms of social and emotional support during the antenatal period for women with IDD. Given the emerging research on adverse pregnancy complications and outcomes and the findings from this study related to higher antenatal hospital utilization, the development, testing, and implementation of evidence-based interventions that effectively support women with IDD during their prenatal period is clearly necessary. Furthermore, there is a critical need for further research to develop prenatal care guidelines for women with IDD, understand underlying mechanisms driving increased antenatal hospital utilization, and educate healthcare providers about the prenatal needs of women with IDD.
Acknowledgments
Research reported in this publication was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R01HD082105. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.This work was also supported by a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research under award number 90DPGE0001.
Contributor Information
Monika Mitra, Brandeis University;.
Susan L. Parish, Northeastern University;
Karen M. Clements, University of Massachusetts Medical School;
Jianying Zhang, consultant to Brandeis University;.
Tiffany A. Moore Simas, University of Massachusetts Medical School.
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