Continuity of primary care and prenatal care adequacy among women with disabilities in Ontario: A population-based cohort study

Abstract

Background:

Women with disabilities experience elevated risks for pregnancy complications and report barriers accessing prenatal care. Emerging evidence highlights the significant role primary care providers play in promoting preventive services like prenatal care.

Objective:

To examine the relationship between continuity of primary care (COC) and prenatal care adequacy among women with disabilities.

Methods:

We conducted a population-based study using health administrative data in Ontario, Canada. The study population included 15 to 49-year-old women with physical (n=106,555), sensory (n=32,194), intellectual/developmental (n=1515), and multiple (n=6,543) disabilities who had a singleton livebirth or stillbirth in 2003-2017 and ≥3 primary care visits <2 years before conception. COC was measured using the Usual Provider of Care Index. Nominal logistic regression was used to compute adjusted odds ratios (aOR) for prenatal care adequacy, measured using the Revised-Graduated Prenatal Care Utilization Index, for women with low versus moderate/high COC, controlling for other social and medical characteristics.

Results:

Women with disabilities with low COC, versus those with moderate/high COC, had increased odds of no (aOR 1.42, 95% CI 1.29-1.56), inadequate (aOR 1.19, 95% CI 1.16-1.23), and intensive prenatal care (aOR 1.22, 95% CI 1.19-1.25) versus adequate. In additional analyses, women with low COC and no/inadequate prenatal care were the most socially disadvantaged among the cohort, and those with low COC and intensive prenatal care had the greatest medical need.

Conclusion:

Improving primary care access for women with disabilities, particularly those experiencing social disadvantage, could lead to better prenatal care access.

INTRODUCTION

Receipt of timely and consistent prenatal care is crucial for healthy pregnancy.¹ Prenatal care serves an important preventive function by providing an opportunity to screen for congenital anomalies, pregnancy complications, and lifestyle factors, allowing early identification of risks and provision of appropriate care.^2,3 Women with disabilities represent 12% of the reproductive-aged population.⁴ Their pregnancy rates have increased in recent years,⁵ and compared to their peers, they face elevated risks of perinatal complications.^6,7 Studies demonstrating late access to prenatal care and receipt of fewer than the recommended number of visits among women with disabilities, particularly those with intellectual/developmental disabilities⁸ and hearing loss,⁹ are thus concerning. Identifying factors associated with prenatal care adequacy in this population may present an opportunity to optimize prenatal care access and, therefore, perinatal outcomes.

Qualitative research demonstrates barriers to entering prenatal care,¹⁰ such as lack of information about where to obtain care, and barriers to navigating care,¹¹ such as inaccessible care settings, negative provider attitudes, and lack of tailored resources for disabled women. One potential risk factor for inadequate prenatal care in this population that has not been explored is lack of an ongoing relationship with a primary care provider before pregnancy. In the general population, continuity of primary care (COC) is associated with better uptake of preventive care like cancer screening^12,13 and vaccination.¹² There is also evidence of the significant role primary care providers play in promoting preconception health, which may facilitate timely entry into prenatal care through better pregnancy planning and a stronger provider-patient relationship.¹⁴ Given women with disabilities face barriers to primary¹⁵ and other preventive care¹⁶ including preconception care,¹⁷ it is critical to examine the relation between preconception COC and prenatal care adequacy in this population, to promote earlier and better access to prenatal care.

Using an Ontario, Canada, population-based cohort, we examined the relationship between COC and prenatal care adequacy among women with disabilities.

METHODS

Study Design and Data Sources

A population-based cohort study was conducted in Ontario, Canada. We accessed and analyzed data at ICES, formerly known as the Institute of Clinical Evaluative Science, a complete and reliable¹⁸ repository of administrative data from health care encounters of Ontario residents, for whom medically necessary physician/hospital services, including primary and prenatal care, are provided free of charge. Disability was identified in hospitalizations from the Canadian Institute for Health Information Discharge Abstract Database and Ontario Mental Health Reporting System, emergency department visits from the National Ambulatory Care Reporting system, and outpatient visits from the Ontario Health Insurance Plan (OHIP) dataset. The OHIP dataset, Client-Agency Program Enrollment dataset, and ICES Physician Database were used to measure primary and prenatal care. Demographic information was identified using the Registered Person Database and Census data. Records were linked using a unique encoded identifier. Data use was authorized under section 45 of Ontario’s Personal Health Information Protection Act, which does not require review by a Research Ethics Board.

Study Population

There are 140,000 births in Ontario each year, of which one in eight are to women with disabilities.⁵ Our study population consisted of women with a physical, sensory, or intellectual/developmental disability, or two or more of these disabilities, who were between 15 and 49 years; had a singleton livebirth or stillbirth conceived between April 1, 2003 and March 31, 2017; and had ≥3 primary care visits in the two years before conception. Disability was identified using algorithms¹⁹ based on ≥2 physician visits or ≥1 hospitalizations or emergency department visits with a disability diagnosis between database inception and conception. Births were identified in MOMBABY, which comprises maternal-newborn records for >98% of births.

Exposure

COC was measured using the Usual Provider of Care (UPC) index in the two years before conception.²⁰ The UPC index uses a validated algorithm to measure the proportion of visits to all primary care providers that are made to the usual care provider, among individuals who had ≥3 primary care visits in a 2-year period.²⁰ Primary care physicians included family physicians, general practitioners, and specialists such as internists who provide primary care. The usual primary care provider was the physician to which a person was rostered; if not rostered, the physician with the highest cost among primary care claims for that person was selected. The UPC index results in three levels: low (0.00-0.50), moderate (0.51-0.80), and high (>0.80). We combined the moderate and high levels. Individuals with <3 primary care visits were excluded because COC cannot reliably be measured in a small number of visits.²⁰

Outcomes

Prenatal care visits were identified in the OHIP dataset as those with a family physician or obstetrician between conception and delivery. These data do not capture midwifery care; however, few women would have no initial prenatal care by a family physician. Prenatal care adequacy was derived using the Revised Graduated Prenatal Care Utilization Index (R-GINDEX)²¹ which measures timing of initiation of prenatal care (trimester 1-3), total number of prenatal care visits, and gestational age at delivery (measured in 70% by first trimester ultrasound²²). Using American College of Obstetricians and Gynecologists (ACOG) guidelines,² four prenatal care adequacy groups were created based on these parameters: intensive, adequate, inadequate, and no care. Secondary outcomes were timing of initiation of prenatal care (first, second, and third trimester) and number of prenatal care visits (less than recommended, recommended, and more than recommended) separately,^2,3 since inadequacy can be driven by late entry into prenatal care and/or receipt of fewer than the recommended number of visits. Women who received no prenatal care with a physician were analyzed as a separate category.

Covariates

As covariates, we measured maternal age, parity, disability type (physical, sensory, intellectual/developmental, multiple), neighbourhood income quintile (based on dissemination area-level Census income data), rurality (measured using the Rurality Index of Ontario²³), comorbid medical conditions (measured using the Johns Hopkins Adjusted Clinical Groups^® System Version 10),²⁴ pre-pregnancy mental illness (i.e., psychotic, mood/anxiety, or other disorders), and pre-pregnancy substance use disorders.²⁵

Analyses

Characteristics of women with disabilities with low and moderate/high COC were described using frequencies and percentages and compared using standardized differences.²⁶ Covariates were tested for collinearity before model building and met thresholds. Nominal logistic regression was selected to estimate odds ratios (OR) and 95% confidence intervals (CI) of prenatal care adequacy (none, inadequate, adequate [referent], and intensive) for low COC compared to moderate/high COC. To adjust for clustering due to women with multiple births during the study period, generalized estimating equations were used. Covariates in adjusted models were maternal age, parity, disability type, neighbourhood income quintile, rurality, pre-pregnancy chronic medical conditions, mental illness, and substance use disorders.

Additional analyses were completed to (1) describe prenatal care adequacy by COC in women with different types of disabilities separately; (2) describe the social and health characteristics of women with disabilities with no, inadequate, and intensive prenatal care compared to adequate care, stratified by COC; (3) assess the association between COC and timing of initiation and number of prenatal care visits separately (the latter in full-term births only); and (4) replicate the analyses among women without disabilities to determine whether similar associations were observed in non-disabled women.

Analyses used SAS version 9.4.

RESULTS

There were 146,807 births to 109,121 women with disabilities who had ≥3 primary care visits in the two years before conception. Compared to those with moderate/high COC, women with low COC were more likely to be <25 years, less likely to be multiparous, and more likely to have substance use disorders (Table 1).

Table 1. Baseline characteristics of women with disabilities with a singleton live or stillbirth delivery (N=146,807) by level of continuity of care in Ontario between 2003-2017.

Data shown as n (%) unless otherwise indicated.

Characteristic a	Low primary care continuity N=41,361	Moderate/high primary care continuity N=105,446
Maternal age, years
15-24	8,972 (21.7)	17,406 (16.5)
25-34	24,140 (58.4)	64,686 (61.3)
35-49	8,249 (19.9)	23,354 (22.1)
Multiparous	22,567 (54.6)	64,076 (60.8)
Type of disability
Physical disability	29,578 (71.5)	76,977 (73.0)
Sensory disability	9,395 (22.7)	22,799 (21.6)
Intellectual/developmental disability	502 (1.2)	1,013 (1.0)
Multiple disability	1,886 (4.6)	4,657 (4.4)
Neighbourhood income quintile
1-2 (low)	18,006 (43.7)	42,108 (39.9)
3-5 (high)	23,134 (55.9)	63,006 (59.8)
Missing	161 (0.4)	332 (0.3)
Rural residence	1,520 (3.7)	5,361 (5.1)
Chronic medical conditions	16,003 (38.8)	41,817 (39.7)
Mental illness	9,642 (23.3)	24,008 (22.8)
Substance use disorder	1,519 (3.7)	1,244 (1.2)

^aData presented in bold have standardized differences > 0.10 compared to women with moderate/high primary care continuity.

Most women with disabilities, regardless of the level of preconception COC, received adequate or intensive prenatal care (Figure 1). In adjusted analyses, women with low COC, compared to those with moderate/high COC had increased odds of receiving no (aOR 1.42, 95% CI 1.29-1.55), inadequate (aOR 1.19, 95% CI 1.16-1.23), and intensive (aOR 1.22, 95% CI 1.19-1.25) versus adequate prenatal care (Table 2). This relation was consistent across all disability groups (Figure S1). Among those with low COC, women receiving no or inadequate prenatal care were more likely than those with adequate prenatal care to be socially disadvantaged, while those receiving intensive prenatal care were more likely than those with adequate prenatal care to have comorbidities (Table S1). Similar differences in characteristics across prenatal care adequacy groups were observed in those with moderate/high COC (Table S2).

Figure 1.

Rates of no, inadequate, adequate and intensive prenatal care by continuity of care level among women with disabilities (N=146,807).

Table 2.

Unadjusted and adjusted odds of no, inadequate, and intensive prenatal care, compared to adequate, among women with disabilities (N=146,807).^*

	N (%)a				Unadjusted OR (95% CI)			Adjusted OR (95% CI) b
Prenatal care adequacy
Continuity of care	No care c	Inadequate	Adequate	Intensive	No care c	Inadequate	Intensive	No care c	Inadequate	Intensive
Low	713 (1.72)	9915 (23.9)	14,697 (35.5)	16,036 (38.8)	1.42 (1.29-1.55)	1.21 (1.18-1.25)	1.24 (1.21-1.28)	1.42 (1.29-1.55)	1.19 (1.16-1.23)	1.22 (1.19-1.25)
Moderate/high	1458 (1.38)	23,757 (22.5)	42,717 (40.5)	37,514 (35.6)	[Referent]	[Referent]	[Referent]	[Referent]	[Referent]	[Referent]
Prenatal care initiation
Continuity of care	No care c	Trimester 1	Trimester 2	Trimester 3	No care c	Trimester 2	Trimester 3	No care c	Trimester 2	Trimester 3
Low	713 (1.72)	37,922 (91.7)	2088 (5.05)	638 (1.54)	1.27 (1.16-1.39)	1.26 (1.20-1.33)	1.34 (1.22-1.47)	1.29 (1.18-1.41)	1.22 (1.16-1.30)	1.32 (1.20-1.45)
Moderate/high	1458 (1.38)	98,461 (?34)	4292 (4.07)	1235 (1.17)	[Referent]	[Referent]	[Referent]	[Referent]	[Referent]	[Referent]
Number of prenatal care visits
Continuity of care	No care c	1-10 visits	11-14 visits	≥ 15 visits	No care c	1-10 visits	≥ 15 visits	No care c	1-10 visits	≥ 15 visits
Low	641 (1.69)	7566 (19.9)	8777 (23.2)	20,888 (55.2)	1.38 (1.25-1.52)	1.23 (1.21-1.31)	1.19 (1.15-1.22)	1.38 (1.2351.52)	1.23 (1.19-1.28)	1.15 (1.12-1.19)
Moderate/high	1369 (1.02)	17,730 (18.3)	25,896 (19.2)	52,003 (53.6)	[Referent]	[Referent]	[Referent]	[Referent]	[Referent]	[Referent]

Abbreviations: CI = confidence interval; OR = odds ratio; IDD = intellectual/developmental disability.

^*In multinomial logistic regression, each odds ratio can be understood as the product of one 2x2 table. For each table the exposure is the particular characteristic independently being compared to the referent category of that specific characteristic and the outcome is prenatal care adequacy level (no/unspecified care, inadequate, or intensive) compared to adequate care.

^aN represents the number of individuals that fall into that specific category, while the percent represents the proportion of people in that category relative to their respective continuity of care category.

^bAdjusted model controls for maternal age, parity, disability type, neighbourhood income quintile, rurality, pre-pregnancy chronic medical conditions, mental illness, and substance use disorders.

^cNo prenatal care visits with a physician.

Most women with disabilities entered prenatal care in the first trimester (Figure S2). However, women with low COC had increased odds compared to those with moderate/high COC of experiencing entry into prenatal care in the second or third, versus the first trimester (Table 2). Likewise, while most women with disabilities with full term births (N=134,870) received the recommended or more than recommended number of prenatal care visits (Figure S3), those with low COC had increased odds compared to those with moderate/high COC of receiving fewer than the recommended number and more than recommended number of visits, versus the recommended number (Table 2). Associations among women without disabilities (N=1,102,284) were similar, although the effect sizes were attenuated (Table S3).

DISCUSSION

In this large, population-based study, we found women with disabilities who had low COC, relative to those who had moderate/high COC, had elevated odds of no or inadequate and intensive prenatal care. Distinct patterns were identified in secondary analyses, suggesting women with disabilities with inadequate prenatal care were more socially disadvantaged, while those with intensive prenatal care had higher medical need. When examining timing of initiation and number of prenatal visits, low COC was associated with later entry into prenatal care and receipt of fewer than and more than the recommended number of visits, suggesting those with intensive prenatal care received most of this care in the latter part of their pregnancies. These data highlight the need to improve continuity of primary care among women with disabilities in the preconception period, which may ultimately result in better access to prenatal care.

Prior studies have reported disparities in prenatal adequacy in women with versus without disabilities.^8,9 Our study adds to the literature by examining how COC impacts prenatal care adequacy among women with disabilities. While no prior studies have examined this relation, research on other preventive healthcare services found similar results. In the general population, individuals with a regular physician were more likely to receive preventive healthcare such as vaccinations, pap smears, mammograms, and cholesterol testing in Canada¹³ and the United States.¹² Two studies examined COC and preventive healthcare services among individuals with disabilities.^27,28 Allen et al.²⁷ found adults with a physical disability were more likely to receive blood pressure checks, glucose and cholesterol tests, and influenza vaccinations if they had their own doctor and a regular site of care. Plourde et al.²⁸ found no relation between COC and receipt of mammograms in women with intellectual/developmental disabilities, and lower uptake of cervical cancer screening among those with moderate/high COC. Differences in results may be due to different types of disability included in our cohort compared to Plourde et al.²⁸ Not surprisingly, we observed a similar relationship between preconception COC and prenatal care adequacy in women without disabilities as in those with disabilities – though effect estimates were smaller. These findings suggest having a regular healthcare provider improves access to preventive care; our data confirm this in the context of prenatal care for women with disabilities.

Several factors may explain why women with disabilities with low COC had elevated odds of inadequate prenatal care. Many women with disabilities experience barriers entering and navigating the healthcare system, including physical barriers such as inaccessible buildings and nonadjustable examination tables,^10,29 informational barriers such as lack of provider knowledge about disability,^10,15 and attitudinal barriers such as ableism.¹⁰ Due to these barriers, women with disabilities also report greater dissatisfaction with care.³⁰ These same factors that limit access to primary care may also limit access to prenatal care. In the general population, research suggests primary care providers are key providers of preconception care, including sexual health education and reproductive life planning.¹⁴ Yet, healthcare for women with disabilities tends to focus on their disability, rather than reproductive health.³¹ Not having an involved primary care provider may result in missed opportunities for pregnancy planning, late recognition of pregnancy, and inadequate prenatal care.³² Finally, women with disabilities in our cohort with low COC and no/inadequate prenatal care were particularly socially disadvantaged. Women with disabilities report lack of coordination between social and healthcare services.^10,33 Thus, social disadvantage may amplify barriers to primary care generally, and therefore prenatal care as well.

Women with low COC also had elevated odds of receiving intensive prenatal care, with a high number of prenatal care visits. However, compared to those with moderate/high COC, they experienced later entry into prenatal care, so these visits were clustered in the latter part of their pregnancies. Therefore, while their prenatal care was classified as intensive overall, gaps in prenatal care were still identified. Our supplementary analyses suggested that this was a distinct “medically high risk” group with high rates of chronic medical conditions and mental illness.

Strengths of our study include the use of a large, population-based cohort. However, disability was identified using diagnoses, which may result in misclassification of women who did not access healthcare and those whose disability was not recorded by their provider. Disability diagnoses do not capture heterogeneity in activity limitations and participation restrictions women may experience. The UPC index measures concentration of care, not quality of the patient-provider relationship, including attributes such as good communication, trust, and respect.³⁴ Additionally, the UPC index is unreliable for individuals with <3 visits in a two-year period, resulting in our decision to exclude this group, as in prior research.²⁸ However, women with disabilities with infrequent primary care may represent an important group of “healthier” individuals, or very under-served individuals with negative healthcare experiences. The R-GINDEX derives prenatal care adequacy using the ACOG recommendations for low-risk pregnancies.² These recommendations have not been assessed in women with disabilities; however, there are no similar guidelines specific to disabled women. We had no data on midwifery care, nor the quality of prenatal care received. Finally, although we controlled for several confounders, residual confounding from unmeasured factors such as experiences of racism and ableism, or lack of social support, may exist. Finally, income data were derived from area-level measures, which may lead to misclassification.

CONCLUSIONS

Our results demonstrate that increasing COC among women with disabilities may optimize prenatal care adequacy.^35,36 Continuity with a provider improves trust, which increases adherence to treatment and satisfaction with care.³⁷ Trust and familiarity allow primary care providers to contextualize an individual’s health concerns, and focus on the whole person rather than just health concerns.^36,38 This is important for women with disabilities, as their care often focuses on disability rather than overall well-being.³¹ Moreover, people with disabilities report visiting different providers for different needs, which may speak to the lack of disability-specific training among primary care providers.³⁹ Limited access to established primary care networks may make it difficult for women with disabilities to receive appropriate reproductive healthcare, which in turn negatively impacts their access adequate prenatal care. Good primary care access affords opportunities for preconception care⁴⁰ and entry into community-based interventions that address psychosocial needs,⁴¹ both important for health promotion before pregnancy. Improving COC could facilitate a smoother entry into prenatal care for women with disabilities.