Awareness of down syndrome screening among educated Muslim women is associated with a favorable attitude toward testing

Abstract

Objective

There is a general assumption that Muslim women refuse Down syndrome screening, and therefore, many health practitioners do not offer it or briefly discuss it with their participants. This study aims to objectively assess women’s awareness, knowledge, and attitudes toward Down Syndrome screening (D.S.S) in a Muslim-majority population.

Methods

We conducted a cross-sectional study among attendees of antenatal clinics at a major university hospital in Saudi Arabia, aiming for a sample size of at least 385 Muslim women. A semi-structured questionnaire assessed awareness of different D.S.S. options and the source of that information (2 items), specific knowledge of D.S.S. (14 items), and attitudes (4 items). The knowledge and attitudes scores were calculated using a five-level agreement Likert-type scale.

Results

Among 434 participants, with an even distribution among all age groups and a majority of a college degree holder or higher (71%), 178 (41.0%) reported awareness of D.S.S. Factors associated with increased awareness were maternal age above 40 or those under 30, nulliparity, and extended family history of fetal congenital anomalies (P-value = 0.03,0.015, and 0.017, respectively). Recognized tests were ultrasound measurement of nuchal translucency (71.9%) and first-trimester serum screening (58.4%). The sources of knowledge were obstetricians (53.9%), followed by family and friends (27.0%). The overall mean ± SD knowledge score was 53.9 ± 8.7 out of 70, and the mean attitude score was 17.4 ± 2.9 out of 20. Having 1 or 2 children is associated with a higher knowledge score, and most participants who reported awareness of D.S.S. (51.7%) had a favorable attitude toward screening.

Conclusion

Awareness of D.S.S. among Muslim women is associated with favorable attitudes towards testing, contradicting the general assumption and highlighting the need for systematic education to increase awareness and subsequent testing uptake.

Introduction

Down syndrome (D.S.) is one of the most common chromosomal abnormalities, affecting approximately 1.5 per 1,000 live births [1,2,3], and is characterized by the presence of either a partial or complete third copy of chromosome 21 [3,4,5,6]. D.S. is associated with intellectual disabilities and congenital malformations, leading to significant medical and social implications [6, 7].

Advances in technology, genetic analysis, and biochemistry allowed for the development of prenatal screening of D.S. and measurement of the occurrence risk, with several prenatal screening tests, each with variable sensitivity and specificity. Examples of these tests include the triple or quadruple screen, the integrated first-trimester screen, and cell-free D.N.A.

To improve the efficacy of screening programs, the target populations, specifically pregnant women and women of childbearing age, should have adequate awareness and understanding of the utility and tools of prenatal screening and the screened anomaly. Inadequate knowledge and misconceptions may lead to nonadherence and failure of the screening strategy at the public health level [8].

In a review of D.S.S. practice in multiple developed countries, screening was reported to be integrated into routine obstetrical care, where accessibility and genetic counseling programs for pregnant women were offered to ensure awareness and accurate information about screening facts and options as well as the implications of positive results. Such practice enabled couples to decide whether to accept or deny testing [9,10,11].

Historically, D.S.S. has been linked to the termination of pregnancy [12]. This association introduced several ethical dilemmas regarding prenatal screening, notably in conservative societies where termination of pregnancy is commonly declined [13, 14]. For example, in Saudi Arabia, it is generally perceived that many pregnant women have a negative attitude toward prenatal screening, associated with several misconceptions about the test’s utilities and goals [15,16,17].Therefore, prenatal screening for Down Syndrome is not routinely offered in obstetrical care. Instead, it is often discussed at the physician’s discretion and based on participants’ risk factors. As a result, the perceived community knowledge of D.S.S. and the available prenatal screening options remains low.

This study aims to objectively assess awareness and knowledge of prenatal screening for D.S. and the available screening options among pregnant women attending antenatal clinics at one of the leading university hospitals in Saudi Arabia. It further explored women’s attitudes toward the utility of the screening test and their favorability to take the test.

Materials and methods

We conducted an observational cross-sectional study from 1 January 2021 to 28 February 2021. It involved pregnant women attending the antenatal clinics at King Abdulaziz University Hospital (K.A.U.H), Jeddah, Saudi Arabia. Inclusion criteria included all pregnant women coming for antenatal visits who identified as Muslim. The sample size was calculated as 385 participants based on a 95% confidence interval with a 5% margin of error and 50% population proportion. High-risk pregnant women with current pregnancies suspected or diagnosed with D.S. or another congenital anomaly were excluded.

The study protocol was reviewed and ethically approved by the Research Ethics Committee of King Abdulaziz University Hospital (Reference No: 710 − 20). Verbal and written consent were obtained during data collection. Subjects agreed to participate and publish the results. The investigators approached all eligible participants visiting the clinic during the study period and explained the study’s objectives. Written consent was obtained from agreeable participants, and data was collected using a semi-structured questionnaire. The questionnaire was created online via Google form in Arabic and English and administered face-to-face interviews of the participants by trained investigators in a digital format (on iPad). (See supplementary material for a detailed questionnaire). The questionnaire was divided into four parts. Part one comprises sociodemographic data, including age, number of children, educational level, residency location, previous child with D.S. in offspring or other relatives’ children, and history of congenital anomalies in offspring. Part two explored awareness of prenatal screening for D.S. of the different tests offered, including nuchal translucency, first and second-trimester serum screening, and cell-free D.N.A. Participants who reported being aware of testing options were questioned on sources of knowledge, including obstetricians, family physicians, media, relatives, and friends. Part three consisted of a scale to measure knowledge about D.S. (four items) and D.S.S. (ten items); each item was a five-level agreement Likert-type scale enabling the calculation of a knowledge score for the two subscales. Finally, part four explored attitudes towards prenatal screening using a four-item scale, each item consisting of a five-level agreement Likert-type scale enabling the calculation of an attitudes score. Parts three and four were only administered to participants who declared being aware of D.S.S. After conducting a literature review; the authors developed the questionnaire to reflect on the most up-to-date D.S.S. information. Similar studies conducted in different countries were cited to help create a comprehensive questionnaire [18,19,20,21,22]. The two authors evaluated the applicability and content validity in the index population. It was then assessed by a third clinical provider not involved in this research, a maternal-fetal medicine specialist. Cronbach’s alpha calculated the internal consistency of the knowledge and attitude scales (in social studies, values of 0.7 are significant) [23]. Before conducting the study, the questionnaire was tested with ten pregnant women who were not included to assess the clarity of wording and ease of understanding. Appropriate changes were performed to correct any ambiguous wording or difficult-to-understand sentences.

Outcome definition

Three primary outcomes were reported. (1) Awareness about D.S.S. and factors associated were analyzed as a dichotomous variable; (2) the knowledge and attitude levels about D.S. and D.S.S. were analyzed as a numerical variable consisting of the knowledge and attitude scores; and (3) attitudes towards prenatal screening were further analyzed as a binomial variable including favorable and unfavorable attitude. A favorable attitude was defined as a positive response (agree or strongly agree) to all four attitude questions.

Statistical methods

Data was downloaded as an Excel sheet, coded and edited, and transferred to Statistical Package for Social Sciences version 21.0 for Windows (S.P.S.S. Inc., Chicago, IL, U.S.A.) for statistical analysis. Categorical variables are presented as percentage and frequency, while continuous variables are presented as mean ± standard deviation (SD). Factors associated with the awareness about D.S. prenatal screening were analyzed using the chi-square test or Fisher’s exact test, as appropriate. Factors associated with knowledge about D.S. and prenatal screening were analyzed by comparing the mean scores between the different categories of factors using an independent t-test or One-Way ANOVA, as appropriate. In addition, factors associated with favorable attitudes were analyzed using the proper chi-square or Fisher’s exact test. A p-value of < 0.05 was used to reject the null hypothesis, which rejects the association between participants’ knowledge of Down syndrome screening and their attitude toward testing.

Results

A total of 520 responses were received; of these, 86 were identified to be duplicated. Thus, 434 participants were included, with fair distribution across the three age categories: 20–30 (34.3%), 31–40 (36.4%), and > 40 (29.3%). Approximately half were mothers of 3 children or more. The educational levels were remarkably high, with 71.2% having a university degree or higher. History of D.S. in the offspring and other relatives’ children was 2.5% and 8.1%, respectively (Table 1).

Table 1 Participants’ characteristics (N = 434)

Only 41.0% of the participants (178/434) declared being aware of prenatal screening of D.S., and the ultrasound measurement of nuchal translucency from 11 to 13 weeks was the most frequently identified test (71.9%), followed by first-trimester maternal serum screening (58.4%). Sources of knowledge were most frequently obstetricians (53.9%), followed by relatives or friends (27.0%), while only 2.8% declared having received information about D.S.S. from their family physicians (Table 2).

Table 2 Awareness of Down syndrome prenatal screening

Awareness of D.S.S. was higher among women below 30 (48.3%) and above 40 (41.7%) compared to those between 31 and 40 years (33.5%) (p = 0.031). Nulliparous women were more aware of D.S. prenatal screening (52.5%) than their counterparts (p = 0.015). History of D.S. among relatives’ children was associated with higher awareness of prenatal screening (60.0% versus 39.3%) compared with the absence of such history, and the result was statistically significant (p = 0.017) (Table 3).

Table 3 Factors associated with awareness of Down syndrome prenatal screening

The knowledge scale was evaluated using a five-level agreement Likert-type scale for the 14 items included. With an expected score of 1–5 per item and 14–70 for the total knowledge score. Analysis of the internal consistency of the overall knowledge scale of the 14 items showed Cronbach’s alpha = 0.814, and calculation of the knowledge score showed mean ± SD = 53.9 ± 8.7 out of 70 (Table 4). The attitude scale was evaluated similarly for the included four items, with an expected score of 1–5 per item and 4–20 for the total attitude score. Analysis of the internal consistency of the attitude scale showed Cronbach’s alpha = 0.707, and the mean ± SD attitude score was 17.4 ± 2.9 (range = 4–20) (Table 4). Bivariate correlations between the attitude and overall knowledge score showed Pearson’s correlation coefficient r = 0.524 (p-value < 0.001). Knowledge score was higher among women who had one or two children (mean ± SD = 56.4 ± 8.1) compared to those who had no children (53.9 ± 9.5) or those who had three or more (52.1 ± 8.2), and the difference was statistically significant (p = 0.022). No other statistically significant association of knowledge about D.S. and D.S.S. was observed (Table 5).

Table 4 Knowledge and attitudes of Down syndrome and prenatal screening (N = 178)

Table 5 Factors associated with knowledge about D.S. and prenatal screening (N = 178)

Of the 178 participants aware of D.S.S. (178/434), 74.7% (132/178) had a favorable attitude; of those, 51.7% (92/178) were optimally, and 23.0% (40/178) were suboptimally favorable, and the remainder were uncertain or had an unfavorable attitude. However, not statistically significant, maternal age of more than 40 and modest education levels were associated with favorable attitudes towards testing. For instance, 64.2% of women above 40 favored D.S.S. compared to less than 50% of women 40 years old and younger. Similarly, 66.7% of women with a general education level favor D.S.S. compared to those with a university degree or higher, where less than 50% favor D.S.S. No other notable association was observed (Table 6).

Table 6 Factors associated with favorable attitude towards prenatal screening (N = 178)

Discussion

Summary of findings

The present study showed that almost 60.0% of pregnant women attending antenatal clinics at K.A.U.H in Saudi Arabia have never heard of D.S.S, despite the sample’s high educational level, comprising 71.2% of participants with a university education or higher. Furthermore, awareness was significantly lower among women between 30 and 40 years old and those with children. Of those who reported knowledge of D.S.S., the vast majority had a favorable attitude toward screening, with over two-thirds being optimally favorable to undertaking the screening.

Awareness of prenatal screening

In our study, only 41% of the participants were aware of D.S.S., consistent with several international reports raising concerns about insufficient awareness, knowledge, and understanding of prenatal screening for D.S. in developing countries, resulting in a lower screening uptake than in developed countries. Lack of knowledge and awareness is partly responsible for the discrepancy in testing uptake between developing and developed countries rather than participants’ demographics or belief differences.

In a study from other developing countries with similar sociodemographic makeup to Saudi Arabia, like Morocco, the vast majority of surveyed women did not know about D.S.S. and never heard of it. More than 85% voiced interest in pursuing screening when counseled about testing and its implications [24].

Knowledge of prenatal testing

In addition, we have shown in this study that even in conservative societies, parents’ ability to accept testing is influenced by their knowledge level of the subject at hand, which is associated with a positive attitude toward testing [20]. Factors that influenced the level of knowledge were maternal age and having children. There is higher awareness in women under 30, likely related to the generational effect, as younger people are more aware of medical advances due to unlimited access to online educational resources rather than relying on medical information from a healthcare professional.

We found that having children is associated with lower knowledge levels in the study population, contrary to reports from other developing countries where women with children were more likely to have higher knowledge [11]. This discrepancy is likely related to the implementation of national screening programs in these countries, highlighting the need for this kind of systematic education in Saudi Arabia.

While educational content needs to be tailored to accommodate cultural differences, it should enable informed decision-making, provide relevant information, and avoid excessive and complex details that may be discussed in individual cases. In addition, it must address positive result significance and options [20, 25]. The persisting probability of false positive results may add to the psychological distress and uncertainty of the concerned parents, which may constitute another barrier to undertaking the test. This urges healthcare professionals to be more aware of the levels of accuracy and limitations of the available tests [11, 26].

Attitudes toward prenatal screening

In the present study, among the 178 aware women, attitudes were classified as being optimally favorable to prenatal screening if participants agreed with all four following statements (prenatal screening reduces the mother’s anxiety, it provides helpful information to parents, it is valuable and recommendable, and they showed preparedness to uptake the screening in a future pregnancy.). They would be classified as suboptimally favorable if they agreed to three out of the four statements. Due to the positive correlation between knowledge and attitude, we conclude that participants with unfavorable attitudes might have a different position after further education and counseling. However, this needs to be examined in another study examining participants’ attitudes before and after counseling.

To understand the general negative attitudes towards prenatal screening, it is essential to acknowledge the popular and religious beliefs regarding having a D.S. child and the related ethical questions in religious communities. In Islamic societies, having a child with a congenital anomaly is considered God’s will (Allah’s will), which imposes acceptance and excludes the possibility of abortion. Consequently, some parents may be unfavorable to prenatal testing to avoid challenging their faith by anticipating Allah’s decision [27, 28]. Philosophically, it is judicious to confront the advent of noninvasive prenatal screening tests for congenital anomalies with the dilemma of abortion practice and its social acceptance [29].

Limitations

The study is limited by the self-declared knowledge and the digital administration of the questionnaire on an electronic device, which may produce a selection bias, such as over-representing highly educated individuals.

Conclusion

Assessing awareness, exploring knowledge gaps, and understanding the attitudes among the population about D.S.S. is vital to promoting the early detection and management of D.S. There are low levels of awareness and knowledge among Muslim women about D.S.S. (41.0%) of the sampled population having heard about it. Interestingly, those who reported awareness and knowledge have a generally positive attitude toward screening. Despite the participants’ generally higher level of education (71.0%), the level of academic education did not appear to influence their awareness and knowledge of D.S.S., highlighting the need for systematic education programs involving all women and their partners about D.S.S. counseling and education. The content of the education programs should be appropriately designed to enable informed decision-making while addressing the common misconceptions and ethical questions concerning participants’ faith, preference, and psychological sensitivity to prevent a reverse effect on their attitudes. Of note is that this integrative approach to parents’ education should consider enhancing the counseling skills of physicians and healthcare providers.