Medicine: The Concerns of a Section of Moslem-Turkish Women Toward Prenatal Diagnosis
Dr. Fulya Teksen
BWW Society Member Dr. Fulya Teksen is Associate Professor of Medical Biology and Genetics at the Ankara University Faculty of Health Education, and has conducted extensive research in the field of pre-natal diagnosis.
A prospective study was carried out at the Ankara University Faculty of Medicine Obstetrics and Gynaecology Department on 125 Turkish Moslem women undergoing prenatal diagnosis. For the prenatal diagnosis of chromosomal disorders, chorionic villus sampling (CVS) (n: 15), amniocentesis (A) (n: 87) and cordocentesis (C) (n: 23) techniques were used according to gestational age, the type of the genetic disease, referral time to the hospital and preference of the patient. The questions related to prenatal diagnosis (PND) and termination of pregnancy were asked of the patients before and after the application of the procedure and finally, after the receipt of the results. The attitudes of women were evaluated in relation to their age, religious affiliation, education, reason for referral, other factors affecting their decision and the source where they had been informed of the test. Their answers were analyzed by chi-squared and Fischer’s-Exact tests.
It was concluded that most of the women (86.4%) were satisfied with being applied one of the prenatal diagnostic tests because of their high-risk pregnancies.
Key Words: Amniocentesis, chorionic villus sampling, cordocentesis, Moslem-Turkish women, satisfaction.
The widespread usage of prenatal diagnostic tests in the last two decades has increased the need and importance of highly informative but non-directive (Kessler S, 1981, Verp MS et al., 1988) genetic counselling. The genetic counselling tends to focus on the potential risk of miscarriage of the fetus related to the procedure, the likelihood and timing of the miscarriage, timing of induction in the case of having an affected fetus (Kupperman M et al., 1999), the application time of the procedure according to the gestational week of the pregnancy, and the survival of the diagnosed abnormal fetus etc. The pregnant women and their partners need detailed information given in their own language and according to their educational level as well as their psychological and cultural situations (Sjögren and Marsk, 1989). In the view of this detailed knowledge, the couples would give their own decision about the future of their fetus (Browner H et al., 1999), and in the case of the preference of prenatal diagnosis, they would discuss the type, application and the results of the technique with their physician and genetician.
The aim of the present study was to investigate the behavior, psychological distress and attitude of a group of Moslem-Turkish women undergoing prenatal diagnosis in view of various genetic indications.
PATIENTS AND METHODS
125 pregnant women undergoing prenatal diagnosis were included in the study. Among these; amniocentesis was applied to 87 (69.6%), chorionic villus biopsy to 15 (12%) and cordocentesis to 23 (18.4%) of the patients. The maternal age ranged from 17 to 44 (mean: 32.73 ± 6.51) and the gestational ages were between 10 to 34 weeks (mean: 18.51 ± 4.79). The indications for prenatal diagnosis were high maternal age (n: 54), pathologic ultrasonographic (USG) examination (n: 21), previous child with chromosomal anomaly (n: 18), suspicious triple test result (n: 26), maternal pathology (n: 2), translocation carrier (n: 2) and anxiety (n: 2) of the mother. In high-risk pregnancies, the condition was explained in detail to the parents, such as the survival rate of the suspected syndrome, risk of miscarriage according to the procedure, application of the procedure and time of the tests, and prenatal diagnosis was offered. After the parents were fully informed about the tests, some time was given for the couples to think and give their decision about PND. After the couples gave their decision, an appointment was given for the test. The choice of the type of the PND test was done according to the gestational age, specifity of suspected anomaly and preference of the woman.
For the evaluation of woman’s attitude towards the prenatal diagnosis, the women were offered questionnaires (Table I) and interviewed first just before the application of the prenatal diagnostic test, later by the second one immediately after the application of the procedure, and finally the general comments of the patients were underestimated after the receipt of the test results.
The questions were asked on the day of application in a separate room given with adequate time. Statistical analysis was done by using chi-squared and Ficher’s Exact tests.
Educational levels of women undergoing prenatal diagnostic tests are shown in table II. It was observed that a great percentage of patients belonged to high educational levels (high school and university) but in spite of this fact only 55 women (44%) had knowledge about PND at their first referral to our laboratory, which was significantly less than with the CVS applied group (p < 0.001). Most of them had received the information from the doctors (15.2%), books (11.2%), friends (9.6%), television (4%) and the other members of the family (4%).
All of the women undergoing prenatal diagnosis were Moslem. The preference of methods among patients was evaluated and it was observed that independent of the educational status, most of the patients preferred amniocentesis (40%) and to a lesser extend CVS (28.6 %) and cordocentesis (18.2 %). Their idea did not change after the application of the tests (p<0.001) and it was observed that the satisfaction with the test was more in the amniocentesis and CVS groups than the cordocentesis applied group (p<0.001). Cordocentesis was chosen mostly in patients with pathological USG examination (p<0.001), amniocentesis was preferred in high maternal age indication group (p<0.001) and CVS in the group with a previous abnormal child (p<0.001).
The factors affecting the women’s decisions regarding PND and their concerns about the procedure were asked before and after the application of the test, and their thoughts about the procedure were evaluated according to their answers and summarized in Table III. As can be seen from the table it was observed that the pain during the application of the procedure, risk of miscarriage, the concerns of false result and no result continued after the test (p<0.01). On the other hand the concerns about the injury of the fetus, risk of infection, pathological result, experience of the doctor and the team and the harm of the procedure to their bodies decreased (p>0.05) after the application of the tests.
It was observed that suspicious triple test results and suggestions of the doctor were the most effective factors (p<0.001) in the decision of the women for prenatal diagnosis. In general (95.2%) the husbands or partners of the women supported them in the prenatal diagnosis decision and application of one of the PND procedures.
In the cytogenetic analysis, 5 fetuses with abnormal chromosomal constitution were obtained. Among these 4 of them were trisomy 21 (47,XX,+21 and 47,XY,+21) and the other case was Klinefelter syndrome (47,XXY). All of the pathological fetuses were induced by the request of parents. Two cases with pathological USG examination were diagnosed as Saldino-Noonan and osteogenesis imperfecta. The parents of these fetusus refused termination because of their religious beliefs. At term, the Saldino-Noonan case was stillborn and the osteogenesis imperfecta case was live born and both of the diagnoses were con-firmed after birth.
All the women (100%) having pathological results had information about PND tests upon referral to the hospital compared with the women giving birth to normal babies (p< 0.001).
Finally, the idea of women after the receipt of the results of PND tests were evaluated. It was observed that although a great percentage (94.4%) of patients claimed that they had been very excited during the waiting period of the results, most of the patients (87.2 %) confirmed that they had made a right decision in choosing to undergo the tests. 76.8% also confirmed that they would make the same decision again if needed, and 80 % of the women said that they would advise the procedure to others.
In general, the satisfaction rate of the women in PND was calculated as 86.4 per cent.
Rapid and safe prenatal diagnosis has become the standard of care in high-risk pregnancies. Our present study has also shown that Turkish-Moslem women readily prefer the prenatal diagnostic tests if their risks of having an abnormal child could be explained in detail by the authorized medical staff including gynaecologist, genetician, psychologist, molecular biologist etc. It was observed that in our study population only 44 per cent of women had some information about PND at their first referral to the hospital, mostly from their doctors (19%). This ratio varied greatly for different countries and ethnic groups. For example, in a study designed for Swedish women, it was reported that 68% of patients had information about PND at their first visit to hospital (Sjögren and Marsk, 1989), and this ratio was 60% for a group of women eligible for prenatal diagnosis in the Netherlands (Brandenburg et al., 1991). It should be emphasized that before giving information about PND, a genetic counselling after a three-generation pedigree analysis is superior in genetic risk assessment (Cohn et al., 1996), and it should provide accurate, unbiased and value-sensitive information to families enabling them to make their decisions most consistent with their personal values and circumstances.
In many studies the women were questioned regarding their ethnicity, religious affiliation, education, age, reason for referral (Viljoen et al., 1996) including psychological reasons (Sjögren and Uddenberg, 1990) and their concerns about the tests. There is some evidence that ethnicity matters in prenatal diagnosis. For example, Hispanic women are less likely than other ethnic groups to accept amniocentesis (66.1%) and women of Mexican-origin living in the United States had a refusal rate (40 %) significantly higher than in most other US populations.
It was reported that the more educated or accultured woman, the more likely she would be to accept amniocentesis (Browner et al., 1999). In our group 64 % of patients had an education of high school or university level, and while compared with the less educated groups (illiterate, primary and secondary school) there was not a significant difference in the acceptance rate of prenatal diagnosis (p>0.005) between the two groups. It was observed that in both groups amniocentesis was preferred (p<0.001). The percentage of women choosing CVS was significantly higher (p<0.001) in the well-educated group (50 %) than less educated group (28 %).
It was also put forward that the more religiously observant a woman, the less likely she would be to accept amniocentesis, and the degree to which a woman and her partner opposed abortion was also expected to correlate with refusal of prenatal diagnosis (Browner et all, 1999). In our cases, 2 women who were diagnosed as carrying abnormal fetuses with Mendelian disease refused to have induced abortion because of their high religious affinity. In a study designed in Africa, it was reported that Moslem women accepted amniocentesis less frequently (66%) than other religious affiliations (79.7%) but accepted the termination of the pregnancy 1.33 times more than these persuasions (Viljoen et al., 1996); that is in concordance with our results showing a 66.6% rate of accepting the termination of pregnancy. But it was also found that Moslem-Turkish women accepted prenatal diagnosis in a higher rate (nearly 90 %) than the other Moslem populations as also shown by another study from Turkey (Aydınlı, 1992). The difference may be explained due to the varying attitudes of different Moslem countries toward PND.
It was observed that the most common referral for the prenatal diagnosis was high maternal age. In our study group the highest age was observed in the amniocentesis group (42) and it was observed that these patients mostly preferred amniocentesis for PND (p<0.001). The other major groups referred for prenatal diagnosis included the patients having pathological USG findings or suspicious triple tests and the women who had an abnormal child in their first pregnancies or in the family as they need more intensive and extended counselling (Robinson et al., 1975) and their anxiety levels were very high (Beeson and Golbus 1979). It was interesting to see that in a study including 101 mothers of children with Down syndrome, half had amniocentesis in their subsequent pregnancies but only half of these said they would abort the fetus if Down syndrome was confirmed (Elkins et al., 1986). Similar to other studies (Cederholm et al, 1999), the women undergoing PND in our group were mostly concerned about miscarriage (61%) and injury of their fetus (70%) related to the procedure, the pain during the procedure (65%) and the pathological result they may obtain at the end (64%). Paul S. et al reported a model of patient autonomy, in which physicians may provide alternatives but patients make choices based on their own preferences (Heckerling et al., 1998). It was supported by another study reporting that the patients preferences were not influenced by the physician preferences and practice related factors (Heckerling et al., 1998). But in our study group it was not the case and most of the patients stated that if another PND test was needed in their future pregnancies, they would decide about the tests according to the alternative methods suitable for their own conditions and which will be generally put forward by their physician.
In some studies, the tests that were associated with earlier anxiety reduction were preferred by the patients. Namely, with the assurance of safety and accuracy, CVS method which was applied earlier were preferred to amniocentesis (Robinson et al., 1988). Alternatively, in some other studies long-term out- come mattered most to women (Kupperman et al, 1999) and the amniocentesis preference rate was higher by the explanation of spontaneous abortion rate and limb reduction for CVS (Heckerling et al., 1998). In our study group, the preference of the tests for the next time was asked of women after the application of the tests and their preferences between the procedures CVS, amniocentesis or cordocentesis did not differ significantly (p>0.05).
Finally it was concluded that a group of Turkish-Moslem women undergoing prenatal diagnosis were satisfied with the procedure in general and they have a positive attitude toward prenatal diagnosis when applied under suitable circumstances.
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Browner CH, Preloran HM. Simon J. 1999 Ethnicity, bioethics, and prenatal diagnosis: The amniocentesis decisions of Mexican-origin women and their partners. American J of Pub Health 89:1658-66.
Cederholm M, Axelsson O, Sjoden P.O. 1999. Women’s knowledge, concerns and psychological reactions before undergoing an invasive procedure for fetal karyotyping. Ult Obstet and Gynecol 14:267-72.
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Acknowledgement: The author would like to thank Dr. Kenan Köse for his kind help in the statistical analysis of the study, the details of which are available to interested parties upon request.
Table I : Questionnaire applied to the patients
FACTORS AFFECTING DESICION AND PREFERENCE OF THE PND METHOD
CONCERNS ABOUT THE TEST (BEFORE THE APPLICATION OF THE TEST)
-Pain during the procedure
THOUGHTS ABOUT THE TEST (AFTER THE APPLICATION OF THE TEST)
-Pain during the procedure
GENERAL COMMENTS AFTER THE RECEIPT OF THE RESULT
-The anxiety during the waiting period
Table III: Comparison of the concerns before and thoughts of women and after the application of PND tests
BEFORE PND (n) AFTER PND (n) P ______________ _____________ _ PAIN NO NO LITTLE MEDIUM VERY MUCH 60 10 22 14 14 p<0.05 YES NO LITTLE MEDIUM VERY MUCH (Still concerned) 65 12 28 15 10 INJURY OF NO NO YES DECIDE AFTER DELIVERY FETUS 55 38 13 4 p>0.05 YES NO YES DECIDE AFTER DELIVERY (Less concerned) 70 36 27 7 RISK OF NO NO YES MISCARRIAGE 63 47 16 p<0.05 YES NO YES (Still concerned) 62 27 34 RISK OF NO NO YES INFECTION 85 66 19 p>0.05 YES NO YES (Less concerned) 40 21 19 FALSE RESULT NO NO YES 82 65 17 p<0.05 YES NO YES (Still concerned) 43 22 21 PATHOLOGICAL NO NO YES RESULT 59 43 16 p>0.05 YES NO YES (Less concerned) 66 31 35 NO RESULT NO NO YES 90 70 20 p<0.05 YES NO YES (Still concerned) 35 17 18 EXPERIENCE NO NO YES OF DOCTOR 100 79 21 p>0.05 AND THE TEAM YES NO YES (Less concerned) 25 12 13 HARM OF THE NO NO YES PROCEDURE TO 115 84 31 p>0.05 THE BODY OF YES NO YES (Less concerned) THE WOMEN 10 8 2
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