Background
Although infertility affects an estimated 6.1 million individuals in the United States, only half of those individuals seek fertility treatment and the majority of those patients are White and of high socioeconomic status. Research has shown that insurance mandates are not enough to ensure equal access. Many workplaces, schools, and medical education programs have made efforts in recent years to improve the cultural humility of providers in efforts to engage more racially and economically underrepresented groups in medical care. However, these efforts have not been assessed on a population of patients receiving fertility care, an experience that is uniquely shaped by individual social, cultural, and economic factors.
Objective
This study aimed to better understand the racial, cultural, economic, and religious factors that impact patient experiences obtaining fertility care.
Study Design
A cross-sectional self-administered survey was administered at an academic fertility center in Chicago, Illinois. Of 5000 consecutive fertility care patients, 1460 completed the survey and were included in the study sample. No interventions were used. Descriptive univariate frequencies and percentages were calculated to summarize sociodemographic and other relevant patient characteristics (eg, race or ethnicity, age, household income, religious affiliation, insurance coverage). Rates of endorsing perceived physician cultural competency were compared among demographic subgroups using Pearson chi-squared tests with 2-sided P <.05 indicative of statistical significance. To identify the key determinants of patient-reported worry regarding 9 different fertility treatment outcomes and related concerns, a series of multiple logistic regression models were fit to examine factors associated with patient report of being “very worried” or “extremely worried.”
Results
Members of our sample (N=1460) were between 20 and 58 years of age (mean adjusted , 36.2; standard deviation, 4.4). Among Black participants, 42.3% reported that their physician does not understand their cultural background compared with 16.5% of White participants ( P <.0001). Participants who identified as Latinx were significantly more likely than White participants to report being very/extremely worried about side effects of treatment, a miscarriage, ectopic pregnancies, and birth defects ( P <.05, P= .02, P= .002, P= .001, respectively). Individuals who identify as Hindu were nearly 4 times more likely to report being very/extremely worried about experiencing an ectopic pregnancy than nonreligious participants ( P <.0002). Respondents most strongly identified the biology or physiology of the couple (mean adjusted , 21.6; confidence interval, 20.4–22.7) and timing or age (mean adjusted , 27.8; confidence interval, 26.5–29.1) as being associated with fertility. Overall, respondents most strongly disagreed that the ability to bear children rests upon God’s will (mean adjusted , 65.4; confidence interval, 63.7–67.1), which differed most significantly by race ( P <.0001) and religion ( P <.0001).
Conclusion
Of the patient characteristics investigated, racial and ethnic subgroups showed the greatest degree of variation in regard to worries and concerns surrounding the experience of fertility treatment. Our findings emphasize a need for improved cultural humility on behalf of physicians, in addition to affordable psychological support for all patients seeking fertility care.
Why was this study conducted?
This study was conducted to more thoroughly understand the complex personal, financial, and cultural decision of seeking fertility treatment and factors that may impact patients’ beliefs about fertility.
Key findings
Patients’ religion, race, and ethnicity showed the most substantial impact on their beliefs about infertility and their concerns about seeking treatment. Perceived physician cultural competency differed most among racial groups with Black patients reporting the lowest degree of perceived cultural understanding in their physician.
What does this add to what is known?
Of the patient characteristics investigated, racial and ethnic subgroups showed the greatest degree of variation in regard to worries and concerns surrounding the experience of fertility treatment. Our findings emphasize a need for improved cultural humility on behalf of physicians, in addition to affordable psychological support for all patients seeking fertility care.
Introduction
Infertility, the inability to get pregnant or sustain a pregnancy, affects an estimated 6.1 million individuals in the United States. Although common, the experience of infertility is uniquely personal. Although not all women desire to have children, a survey across 4 different countries reported that 58% of women experiencing infertility felt “flawed as a woman.”
Many people assume they will have no fertility issues and may have heard family stories of how fertile their family is, how people from their ethnic background easily get pregnant, or how fertility is a reflection of their character and ability to parent. When they are unable to conceive, they may question overall health and life plans. People may seek out help for fertility issues by searching for information; asking for help from friends, family, and religious organizations; and seeking out medical evaluation and treatment. When patients are still experiencing infertility despite treatment, they may feel grief and depression that they may not be able to have genetically related children. One study found that up to 26% of women and 9% of men undergoing infertility treatment met the criteria for major depressive disorder. This is higher than the general population, which has a rate of depression of 9% for women and 5% for men.
Pronatalist religious and cultural groups attribute parenthood as central to a person’s identity more than others which can distinctly shape one’s personal experience of infertility and attitude toward seeking fertility treatment. Previous studies have found that those who were more concerned about being labeled infertile are less likely to seek treatment. A survey of fertility patients in 2005 at a Chicago-based clinic found that the social stigma of infertility was “very concerning” to 49% of participants. The same survey found that racial, religious, and socioeconomic differences were evident in self-reported points of concern in seeking infertility treatment. Black women were 3 to 4 times more likely than White women to be concerned about having “failed” to conceive, using science to conceive, the social stigma of infertility, and disappointing their spouse. The social stigma of infertility was of greatest concern to Asian women, particularly of Chinese descent. Compared with White women, women of color were 7 to 18 times more likely to be concerned about friends and family finding out about their infertility treatment.
In addition to the cultural influences on beliefs about infertility treatment, there are disparities in ability to access fertility treatment in the United States by race and ethnicity. In a study from 2006 to 2010, non-Hispanic White women accessed fertility care at disproportionately higher rates than Hispanic or Black women, and this disparity had increased since 1982. Once able to access care, racism and bias within the medical system have resulted in reduced trust in the healthcare system of Black and Hispanic women. Systemic factors owing to racism have had an impact on patients’ ability to access fertility care and their treatment in the United States.
Many workplaces and medical education programs have made recent efforts to improve cultural competency or an understanding the cultural context of medicine so as to improve communication techniques and develop skills to interact respectfully with patients of all backgrounds. Despite these efforts, few studies have assessed whether patients feel that their physician understands their cultural background, specifically in the fertility treatment setting. An enhanced understanding of the experience of infertility requires understanding how social and cultural inequalities are enmeshed with reproductive care and its surrounding beliefs. However, literature on the racial, cultural, and religious influence on the experience of infertility is limited. To address this gap and support ongoing efforts in medicine to improve cultural humility, our survey asked patients receiving care for fertility whether or not they felt culturally understood by their physician.
Our study examines data from patients receiving care at a Chicago fertility clinic and aims to illuminate cultural, social, and economic factors that contribute to disparities in their experiences. Our goal is to understand the social and cultural context of patients’ primary concerns and beliefs about fertility as a part of ongoing efforts to improve the cultural humility of providers and improve the quality of connection between patients and care.
Materials and Methods
Data collection
An institutional review board approval was obtained from Northwestern University Feinberg School of Medicine before initiating the study. Modifications to the previously validated survey instrument were made to investigate gaps in our understanding of the experience of infertility and to adjust for the technological advancements in fertility care in the last decade. A 32-question survey was adapted from previous work of one of the study authors and programmed into Research Electronic Data Capture (REDCap), a secure, Health Insurance Portability and Accountability Act–compliant, data collection platform.
The survey was electronically offered to 5000 unique patients who presented to the Northwestern Center for Fertility and Reproductive Medicine for at least 1 visit from June 2018 to September 2019. The patient emails were obtained by the Northwestern Enterprise Data Warehouse (NEDW). In September 2019, the electronic consent form and survey were emailed using REDCap, and responses were obtained for the next month.
Of the 5000 emailed questionnaires, 377 were undeliverable owing to incorrect email addresses. From the remaining 4623, 1460 survey responses were obtained from participants containing their age, sex, and race or ethnicity (32% response rate). Baseline demographic data were also obtained from the 4623 invited individuals via the NEDW to compare the demographics between survey responders and nonresponders and evaluate potential nonresponse bias.
Our respondents were asked to record their degree of worry or concern about various aspects of seeking treatment. For each of the 10 listed concerns, participants selected “not worried,” “somewhat worried,” “very worried,” or “extremely worried.”
Statistical analysis
Descriptive univariate frequencies and percentages were calculated to summarize sociodemographic and other relevant patient characteristics (eg, race or ethnicity, age, household income, religious affiliation, insurance coverage) among survey respondents (N=1460). Rates of endorsing perceived physician cultural competency were compared among demographic subgroups using Pearson chi-squared tests with 2-sided P <.05 indicative of statistical significance. All participants with complete data for the race or ethnicity variable were included in the final analytical sample. Because missingness was low for the remaining demographic variables, analyses were conducted using all available data.
To identify the key determinants of patient-reported worry regarding 9 different fertility treatment outcomes and related concerns, a series of multiple logistic regression models were fit to examine factors associated with patient report of being “very worried” or “extremely worried.” Each regression model included adjustment for the following: respondent age (<35, 35–37, 38–40, 41–42, >42 years), parity (parous vs nulliparous), race or ethnicity (White, Black, Latinx, Asian, other), income (<$50,000, $50,000–$100,000, $100,000–$200,000, $200–$400,000, >$400,000), religion (Catholic, Protestant, Jewish, nonreligious or agnostic, Muslim, Hindu, other), education (less than bachelor’s, bachelor’s, master’s, terminal professional degree), insurance coverage for fertility treatment (none, <50% coverage, 50%–75% coverage; >75% coverage), and a dichotomous indicator of whether the respondent is currently undergoing fertility treatment or if they have previously completed fertility treatment. Covariate-adjusted means/predictive margins and corresponding 95% confidence intervals (CIs) were calculated and visualized through the margins and margins plot commands in Stata 15 (Version 15.1, StataCorp, College Station, Texas). The “as observed” approach was used, which utilizes the actual observed values for each variable whose values are not fixed during parameter estimation, computes a predicted probability for each case with the fixed and observed values of variables, and then averages the predicted values to obtain a resulting point estimate and 95% CI.
Results
Demographics and patient concerns
Participants (N=1460) were between 18 and 58 years of age (mean, 36.1 years) ( Table 1 ). This age distribution is comparable with the age distribution of the entire invited sample of patients (mean, 36.7 years). Most respondents were White (72.2%), whereas 7.0% identified as Black, 5.4% Latinx, 10.0% Asian, and 5.4% multiple or other ethnic identity. The racial and ethnic composition of our analytical sample was similar to the entire invited sample that was also mostly White (71.9%), 9.3% Black, 8.0% Hispanic, and 11.4% Asian. Most respondents reported a bachelor’s (35.1%) or master’s degree (40.5%) and an annual household income of more than $100,000 (81.2%).
| Participant demographics | All participants, N=1460 (100%) | “Does your physician understand your cultural background?” Number (percentage) of participants responding “Yes,” N=1133 (79.4%) |
|---|---|---|
| Race or ethnicity (n=1460) | ||
| White | 1054 (72.2) | 866 (83.5) |
| Black or African American | 102 (7.0) | 56 (57.7) |
| Hispanic or Latinx | 79 (5.4) | 56 (72.7) |
| Asian | 146 (10.0) | 105 (74.5) |
| Multiple or other | 79 (5.4) | 50 (66.7) |
| X 2 =50.2 P <.001 | ||
| Relationship status (n=1457) | ||
| Single | 99 (6.8) | 70 (73.7) |
| Heterosexual relationship | 1264 (86.8) | 990 (79.8) |
| Divorced or separated | 16 (1.1) | 10 (71.4) |
| Homosexual relationship | 74 (5.1) | 59 (81.9) |
| Other | 4 (.3) | 3 (75.0) |
| X 2 =2.9 P =.57 | ||
| Religion (n=1418) | ||
| Catholic | 531 (37.5) | 440 (77.1) |
| Other Christian | 102 (7.2) | 164 (78.9) |
| Protestant | 212 (15.0) | 104 (87.4) |
| Judaism | 122 (8.6) | 303 (85.4) |
| Hinduism | 48 (3.4) | 71 (71.0) |
| Nonreligious | 360 (25.4) | 36 (75.0) |
| Other | 43 (3.0) | 28 (68.3) |
| X 2 =22.2 P =.001 | ||
| Age (n=1410) | ||
| <35 y | 515 (35.7) | 409 (81.8) |
| 35–37 y | 402 (27.9) | 327 (82.8) |
| 38–40 y | 286 (19.9) | 218 (78.4) |
| 41–42 y | 132 (9.2) | 96 (72.7) |
| >42 y | 107 (7.4) | 72 (68.6) |
| X 2 =15.9 P =.003 | ||
| Education (n=1458) | ||
| Less than a bachelor’s degree | 76 (5.2) | 62 (84.9) |
| 4-y college (bachelor’s degree) | 512 (35.1) | 400 (79.7) |
| Master’s degree | 591 (40.5) | 448 (77.5) |
| Professional degree | 279 (19.1) | 221 (81.3) |
| X 2 =3.2 P =.36 | ||
| Annual household income (n=1440) | ||
| <$50,000 | 41 (2.9) | 28 (73.7) |
| $50,001–$100,000 | 230 (16.0) | 175 (78.5) |
| $100,001–$200,000 | 589 (40.9) | 449 (78.0) |
| $200,001–$400,000 | 425 (29.5) | 342 (81.4) |
| >$400,000 | 155 (10.8) | 124 (81.1) |
| X 2 =2.9 P =.57 | ||
| Fertility treatment status (n=1395) | ||
| Currently seeking or undergoing fertility evaluation or treatment | 568 (40.7) | 434 (78.6) |
| Previously underwent fertility evaluation or treatment | 827 (59.3) | 659 (81.1) |
| X 2 =1.2 P =.27 |
There was a significant variance in response to the question “Does your physician understand your cultural background?” by respondent race or ethnicity ( P <.001). Among Black participants, 42.3% reported that their physician does not understand their cultural background compared with 16.5% of White participants. Physicians’ cultural understanding was also perceived to be low among multiracial participants and participants whose race or ethnicity was not listed (66.7%).
High financial cost
The odds of being “very/extremely worried” about the high financial cost of treatment were inversely associated with both income and insurance coverage for fertility treatment ( Figure 1 ).
Medication and treatment side effects
Latinx participants were more likely than White participants to report being very/extremely worried about side effects of treatment (odds ratio [OR], 1.7; 95% CI, 1.0–2.9; P =.05). Asian participants also tended to be significantly more worried about side effects of treatment than White participants (OR, 1.5; 95% CI, 0.9–2.4).
Miscarriage
Latinx participants were twice as likely to be very/extremely worried about a miscarriage than White participants (OR, 2.2; 95% CI, 1.1–4.3; P =.02). Parous participants were significantly more likely to be very/extremely worried about a miscarriage than nulliparous individuals (OR, 1.5; 95% CI, 1.1–2.0; P =.004). Catholic participants were significantly more likely to report being very/extremely worried about experiencing a miscarriage than nonreligious participants (OR, 1.4; 95% CI, 1.0–1.9; P =.04).
Ectopic pregnancy
Latinx individuals were more than 2 times more likely to respond very/extremely worried about ectopic pregnancies than White individuals (OR, 2.4; 95% CI, 1.4–4.1, P =.002). Individuals who identified as Hindu were nearly 4 times more likely to report being very/extremely worried about experiencing an ectopic pregnancy than nonreligious participants (OR, 3.7; 95% CI, 1.6–8.7; P =.002). Both Catholic and Jewish participants were also more likely than nonreligious participants to share this concern (OR, 1.4; 95% CI, 1.0–1.9; P =.06; and OR, 1.6; 95% CI, 1.0–2.6; P =.05, respectively). Participants with any postgraduate education were significantly less likely than participants without a college education to report being very/extremely worried about experiencing an ectopic pregnancy (OR, 0.5; 95% CI, 0.3–0.9; P =.02).
Birth defects
Concern about birth defects was the most frequently reported ( Supplemental Table ). Latinx and Asian respondents reported feeling very/extremely worried about birth defects as a result of undergoing fertility treatment significantly more than White respondents (OR, 2.5; 95% CI, 1.4–4.4; P <.001; and OR, 2.2; 95% CI, 1.3–3.6; P =.002, respectively). Catholic and non-Catholic Christian participants were significantly more worried about birth defects than all other religious groups (OR, 1.4; P <.02; and OR, 1.7; P =.04, respectively).
Violating religious beliefs
Protestant participants were the most likely to report being very/extremely worried about violating their religious beliefs through the use of fertility treatment (OR, 13.8; 95% CI, 3.1–61.9; P <.001) followed by Catholic (OR, 9.0; 95% CI, 2.1–39.0; P <.003), other Christian (OR, 7.7; 95% CI, 1.3–44.6; P =.02), and Jewish participants (OR, 7.5; 95% CI, 1.3–42.9; P =.02). Latinx and Asian participants also tended to more frequently report being very/extremely worried about violating religious beliefs than those from other racial and ethnic groups (OR, 2.3; 95% CI, 0.8–6.5; and OR, 2.6; 95% CI, 1.0–6.9 respectively).
Using science and technology to conceive
Among racial and ethnic groups, Latinx participants were twice as likely than White participants to report being very/extremely worried about using science and technology to conceive (OR, 2.4; 95% CI, 0.9–6.4). Among religious groups, Catholics were significantly more likely than nonreligious participants to be very/extremely worried about using science and technology to conceive (OR, 1.8; 95% CI, 1.0–5.0; P <.05).
Triplets or quadruplets
Asian participants were nearly 2 times more likely than White participants to report being very/extremely worried about having triplets, quadruplets, or more (OR, 1.9; 95% CI, 1.0–3.4; P =.04). Parous participants were also significantly more likely to report being very/extremely worried about triplets or quadruplets than nulliparous participants (OR, 1.5; 95% CI, 1.0–2.1; P =.03)
Relationship with partner
Catholic participants were the only group that was significantly more likely to report being very/extremely worried about their infertility negatively affecting their relationship with their partner than nonreligious participants (OR, 1.9; 95% CI, 1.1–3.2; P =.02).
Patient understanding of fertility
In addition to the questions about concerns, respondents were also asked to respond on a visual analog scale from 0 (strongly agree) to 100 (strongly disagree) for 5 factors that may be commonly attributed to be the cause of infertility. On average, respondents tended to report agreement with the statement “The ability to bear children rests upon:” the biology or physiology of the couple (mean, 21.6; 95% CI, 20.4–22.7) and timing or age (mean, 27.8; 95% CI, 26.5–29.1) ( Table 2 ). Individuals with less than a bachelor’s degree were significantly more likely to express agreement with the statement that “the ability to bear children rests upon stress levels” than individuals with professional degrees (mean, 40.5; 95% CI, 32.2–48.75; P <.002). White and Asian respondents were significantly more likely than other racial groups to agree with the statement that the ability to bear children rests on a couple’s biology/physiology (mean, 20.9 and 18.8 for Whites and Asians, respectively; P <.001).
