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    Sheiner-Decision Making To End Pregnancy-1998

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    Nasser Vico Rego

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    © All Rights Reserved
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    mua, evn ELSEVIER European Journal of Obstetrics & Gynecology and Reproductive Biology 76 (1998) 141-146, Decisions regarding pregnancy termination among Bedouin couples referred to third level ultrasound clinic Eyal Sheiner**, Tana Shoham-Vardi”, Dalia Weitzman”, Josef Gohar*, Rivka Carmi® “Deparment of Obstetrics and Gynecology, Soroka Medical Center, Faculty of Health Science, Ben-Gurion University of the Negev, Beer-Sheva, Israel "Epidemiology and Health Services Evaluation Department, Soroka Medical Center. Faculty of Health Science. Ren-Gurion University of the Neges Beer-Sheva, fore! Clinical Genetics Unit, Soroka Medical Center, Faulty of Health Science, Ben-Gurion University ofthe Negev, Beer-Sheva, Israel Received 13 May 1997: received in revised form 31 July 1997; accepted 19 August 1997 Abstract Objective: To identify predictors of parental decision whether to terminate a pregnancy after a diagnosis of a major congenital ‘malformation in a raditional society. Study design: The Bedouin Arabs in southern Israel are a traditional society, with @ high incidence of congenital disorders, Data were abstracted from medical records of 295 families who sought counseling in the third le clinic between 1990 and 1996. Statistical analysis included univariate and multiple logistic regression, Results: The diagnosis of a major ‘malformation was confirmed in 64% of the eases, Pregnancy termination was a realistic option for 125 women (66.5%) as the rest were too advanced in their pregnancy. Such a delay was less common in cases of multiple malformations than in a single malformation (19.2% versus 39.0% respectively. P<0.01). Forty-nine of the 125 women (39.2%) chose to terminate their pregnancy. The only significant predictors of termination decision were earlier gestational week at diagnosis and previous uncompleted pregnancies. Conclusions: These Findings indicate the importance of promoting early genetic counseling and early prenatal diagnosis, for any population where abortions are not readily acceptable. © 1998 Elsevier Science BY el ultrasound Keywords: Bedouins; Pregnancy termination; Congenital malformations; Prenatal diagnosis; Third level ultrasound Introduction The decision on pregnancy termination following the prenatal detection of a malformed fetus presents a complex process involving psychological, cultural and sometimes religious conflicts [1,2]. Therefore, not all couples seeking prenatal diagnosis will necessarily opt to abort a pregnancy if a severe abnormality is detected [3-5]. This situation is even more complicated in a traditional society like the Bedouin Arabs, 2 Muslim minority of about 100 000 people residing in the Negev (the southern part of Israel), who are undergoing a rapid transition from a semi- nomadic to a sedentary way of life, The Bedouin culture “Corresponding author, Tl: +972 7 6500774; fax; 4972 7 6275338) e-mail: (eo Tiana Shoham-Vardi vlanach.ni agua (0301-2115/98/S1900 © 1998 Elsevier Scicave BY. All Fights reserved PLE SO301-2115(97)00178-4 attributes a great importance to familial and tribal cohe- siveness and to high fertility. The Bedouins have large families, most women do not work outside the house and about half of them have less then elementary level of education. Most men have less than high-school level of education, many are unemployed or hold low paying jobs. ‘About 60% of the Bedouins’ marriages are consangui- ‘neous, the most common pattern being first cousin mar- riage [6]. Due to this high prevalence of inbreeding, the Bedouins are at a high risk for congenital malformations and autosomal recessive disorders. Receatly, several genes, for autosomal recessive disorders in the Bedouins have been mapped [7,8], thus providing specific prenatal tests for some families. While prenatal diagnostic services are available, they are generally under-utilized by the Bedouins, mainly due to religious restrictions on abortions 42 E. Sheiner et ol. European Journal of Obstetrics & Ganecology and Reprnuctve Biology 76 (1998) 181146 beyond 120 days after conception. Nevertheless, the most commonly used prenatal diagnostic service is fetal sonog- raphic imaging. ‘The purpose of the present study was to identify predictors of parental decision whether to terminate a pregnancy after a diagnosis of fetal defects, either incom- patible with life or severe enough to significantly interfere with normal living, which was detected on second level sonographic examination and confirmed at a third level ultrasound clinic. Abortions for major congenital mal- formations can be legally obtained in Israel through a pregnancy termination committee, prior to 24 weeks of gestation, 2. Methods 21, Setting ‘The third level ultrasound clinic is located at the Soroka Medical Center, which is the only referral clinic in the Negev region for women in whose pregnancy a fetal malformation of any kind had been detected at a second level sonographic screening, or an abnormal value of maternal serum alpha-feto-protein (MSAFP) was found, .cond level ultrasound which is performed by a certified technician is fully covered by national health insurance. MSAFP test entails a fee of 14 US $. Both tests are currently recommended to all pregnant women attending, any of the Ministry of Health operated Family Health Clinies. The cost of referral to third level ultrasound clini where the examination is performed by a senior obstetr cian expert in sonography, is covered by health insuranc as is termination of pregnancy when necessary. Counseling is given by a team of a pediatric geneticist, a gynecologist ultrasonography expert, a neonatologist, a genetic coun- selor, a public health nurse and a social worker. The decision to cither interrupt or continue the pregnancy is solely made by the couple, and has to be approved by a pregnancy termination committee. 2, Study poputation Two hundred ninety five Bedouin women were diag- nosed with a malformed fetus at a third level ultrasound clinic in the Soroka Medical Center, during a 6 year period between 1990 and 1996. They were all referred to this clinic following abnormal MSAFP screening, or abnormal findings in second level community ultrasound clinics. During this period 26 055 deliveries occurred in Bedouin women, The number of pregnant Bedouin women © amined at a second level ultrasound clinic at that period is rot available. The present study is focused on 188 of those women who were diagnosed as carrying a fetus with major congenital defects (i.e. defects either incompatible with life or severe enough to significantly interfere with normal living). 23, Data Data were abstracted from the medical records of the clinic, Information was obtained regarding maternal age, gravidity, parity, consanguinity, type of residence (perma- ent versus. semi-sedentary), outcome of previous. pre- gnancies, including those that ended in abortion ot perinat- al death, previously affected children, presence of congeni- tal defects in the parents’ extended family and type of the detected fetal defect. 2.4, Statistical analysis Chi square or Fisher exact tests for comparison of proportions, and student ‘tests for comparison of means were used. P<0.05 was considered statistically significant To evaluate the determinants of the decision to terminate pregnancy and various demographic and obstetric factors, univariate and multiple logistic regression analysis were used, Unadjusted and adjusted odds ratios (OR) and their 95% confidence interval (CI) were calculated from the regression coefficients 3. Results ‘The majority of the 295 couples (72%) who comprised the initial study group were consanguineous, 93% of them were first cousins. The consanguinity rate in the study ‘group was higher than in the Bedouins’ population (60%) [6] and higher than in other Israeli Arabs (44%) [9]. Fetuses with major malformations were diagnosed in 188 (64%) of the 295 pregnancies seen at the third level ultrasound clinic. Of those, in 63 cases (33.5%) the pregnancy was advanced beyond 24 weeks of gestation, and the option to interrupt the pregnancy was no longer available, Table 1 presents the characteristics of the 188 women whose fetus had major malformations. No socio- demographic differences were found between the 63 women who were seen in the clinic at or after 24 weeks of gestation (mean: 29.1%4.6 weeks), and the other 125 women who were seen at an earlier stage of pregnancy (mean; 21.94,1 weeks). ‘The characteristics of women where a malformed fetus ‘was diagnosed before week 24 compared to those where it was diagnosed at 24 week or later, did not differ sig- nificantly except for the type of malformations: women with multiply defected fetuses tended to arrive earlier at the clinic compared to women whose fetuses had isolated defects (80% versus 61%, P=0.01), ‘One hundred and twenty five women had the option of pregnancy termination. Table 2 displays the comparison between the 49 women who decided to terminate the E. Sheiner etal 1 Exropean Journal of Obstetrics & Gynecology and Reproductive Biology 76 (1998) 141-146 1 ‘Table | Demographic, obstetric and fetal characteristic of women diagnosed with 4 fetus with « major malformation at 3ed level ultrasound clinic fa=188) Charactenste ‘No of exes 8 Demographic Mean mater age (SD) 284072) Consanguinity None 55.29%) Fist cousins 68 (518) Other 65 (49) ‘Type of setlement Permanent 133 1%) Semissedentary 55.29%) Obterc ‘Mean gestational week at Diagnosis (SD) 243.85) ‘Mean gravidty (SD} 4136) Mean patty (SD) 3332) Primary 38 (20%) Previously uncompleted pregnancies 2 (12%) Faniial Previously affected child 4.23%) Defects in extended! family 14%) Feral Lethal defect 65.35%) Isolated defects 135 725) ccvm 2 TD a Other CNS 6 Genitourinary 2» Gastrointestinal 2 Musculosceletl B Hydrops fetalis 6 Abdominal wall 6 Other 4 -Mutiple detects 33.28%) ‘SD, sandaed deviation; CCVM, congenital cardiovascular malformations, [NTD, neural ube defects: CNS, central nervous system. pregnancy, and the 76 who elected to continue it. Parental decision was found to be unrelated to maternal age, ravidity, party, previous prenatal death, type of residence and presence of congenital malformations in the parents’ extended family. Earlier gestational week at diagnosis was, significantly associated with a decision of pregnancy termination (20.4 weeks versus 22.8 weeks, P<0.01), as were previous uncompleted pregnancies (the difference between the number of pregnancies and the number of births), and a diagnosis of a central nerve system (CNS) ‘malformation as compared to other malformations (54.3% versus 33.3%, P<0.05). A tendency to opt for termination of pregnancy was observed in families which already had ‘an affected child compared to other families (51.7% versus, 35.4% respectively, P=0.11). ‘A. multiple logistic regression model including the following variables: type of defect diagnosed (CNS versus other), gestational age at diagnosis, having one or more previously uncompleted pregnancies and having one or more affected child, showed only the week of gestation and the number of previous uncompleted pregnancies to be statistically significant predictors, while the unique contri- bution of a CNS malformation was no longer statistically Significant (Table 3) 4, Discussion ‘The very few studies investigating determinants of choice after a prenatal diagnosis of a defected fetus, were conducted in western societies. Most couples obtaining a prenatal diagnosis of a major birth defect in the fetus will opt to terminate an otherwise wanted pregnancy (3,10,11] ‘The Bedouin Arabs represent a traditional, religious socie~ ty where fertility and a large family are central values, ‘while late abortions in general are prohibited by religious. laws, Weitzman et al. [6] found that only 24% of the Bedouin women who used prenatal care services, initiated care before 18 weeks of gestation, and only half of them performed one or more diagnostic tests for detection of congenital anomalies. Among Bedouins, as in other popu- lations [12]. the most widely utilized diagnostic procedure was the sonographic examination. A number of factors influence this popularity, among them is the visualization of the fetus, leading to early parental bonding [13] and in most cases to reassurance that the pregnancy progresses well. Other factors explaining utilization of fetal sonog- raphy by the Bedouin women are the non-invasive nature of this procedure and the timing of the screening which i relatively late in pregnancy and corresponds to the time they usually initiate prenatal care. Of the ‘already selective sample of women seeking counseling at the third level ultrasound clinic because of a major defect in their fetus, 63 (33.5%) came too late for an abortion to be considered. Only 49 out of 125 Bedouin women (39%) with a severely defected fetus, who were examined at the third level ultrasound clinic at a gestation- al age still relevant for pregnancy termination, actually decided to choose this option, Women with multiply defected fetuses tended to arrive earlier for third level examination. This may reflect the urgency of referral by the second level clinic and/or the expectant parents’ worry and anxiety having received a diagnosis of multiple defects, Earlier gestational age at diagnosis was found to be associated with parental decision to terminate the preg- nancy. As weeks of gestation go by. not only is bonding, enhanced but also the pregnancy becomes physically evident, and is no longer privately known to the couple but that to the extended family and tribe as well. Those two factors combined make a decision to terminate more difficult. Verp et al. [12] found that pregnancies where detection of abnormalities occurred at an earlier gestational as E. Sheiner et al. | European Journal of Obstetrics & Gynecology and Reproductive Biology 76 (1998) 141=146 Table 2 Characteristics of women receiving a diagnosis of fetal major malformations, by decison to terminate or continue the pregnancy’ (n=125) Charactenstic Toaln= 125 “Terminatedn=@9 Not erminatedn=76 P valve Demogrophic ‘Mean maternal age (SD) psa 28.1 (68) 286009) NS. Consanguinity Nowe 36 36% ae First cousins a 4% 53% Other 2 338 65% Ns. ‘Type of settlement Permanent a 43% 58% Semisedemary 34 De 68% Ns. Obstetric ‘Mean gestational age a diagnosis (SD) 219 42) 204.32) as 0.002 Mean gravidiy (SD) 43.137) 46.85) 41.88) Ns. Mean parity (SD) 35.84) 354) 3605) NS. Primiparity Yes 26 38% 6% No 99 40% ore Ns. Previously uncompleted pregnancies Yes 1s on 24 No 10 30% one 0.02 Faniliat Previously affected child Yes » 38 8s No 96 35 65 Ns. Dect in extended family Yes 9 Be ore No he 40% ore NS. Feral Lethal defect Yes 45 338 61% No 80 Be 3M NS. Isolated defects 82 4% 59% cov 4 305% 68 xs) 35 465% 003 Genitourinary 16 34 Muscolosceleal 9 18% Hydrops fais 4 25% 15% Abdominal wall 4 75% 2% Multiple defects a 38% 65% ‘SD, sandard deviation; CCVM, congenial cardiovascular malformations; CNS, central nervous system; N.S. aot significant ‘age were more likely to be terminated. In contrast, other investigators found that gestational age at diagnosis was not an important variable in the decision to terminate for fetal defects (3,14) While univariate analysis suggested that parents receiv ing a diagnosis of CNS malformations tended more than ‘others to terminate the pregnancy, the multivariate analysis Table 3 Factors predicting pregnaney termination following a logistic regression model shows that controlling for gestational age at diagnosis, the type of malformation (CNS versus other) is no longer a statistically significant predictor. Most women whose fetuses were diagnosed with CNS malformations are referred to the third level ultrasound clinic after abnormal MSAFP scores. This test is performed between 16 and 18 ‘weeks of gestation, and results are available after 3 days, gnosis of severe fet malformations by 3d level ultascund: results from univariate and multiple Factor Univariate analysis ‘Mubivarite analysis Unadjusted OR ‘oH Cl adjusted OR 98% C1 Previovsly uncompleted pregnancies (yes/no) 225, 111-556 2 11-495 CNS detect (yes/no) 27 107-527 209 os7-s.o08 ‘Week of gestation at diagnosis 034 075-095 ox? 0.78-0.98 Previously affected child (es/n0) 9s Osta.s2 165 065-420 ‘OR, ods rato, Cl, confidence interval; CNS, conta nervous system, E, Sheiner et al. 1 European Journal of Obstetrics & Gynecology and Reproductive Biology 76 (1998) 141-146 us thus enabling an earlier referral to the ultrasound clinic. In contrast, other defects are detected at the second level ultrasoiund screening which is not performed before 20 weeks of gestation, resulting in a more advanced preg- nancy when referral to the thitd level clinic occurs, Another significant predictor was the number of previous uncompleted pregnancies, This might reflect a combination of high risk and the wish to avoid the birth of a severely defected fetus. However, we do not have enough data to found these explanations. Finally, increased tendency to terminate a pregnancy was observed in families with a previously affected child. This trend is consistent with the findings of Weitzman et al. [6] that personal experience with a child suffering or dying from a genetic disease is a major factor affecting prenatal care utilization, and espe cially compliance with recommendations for prenatal diagnostic procedures, ‘The findings in this study are limited to prenatal diagnosis of fetal abnormalities at a third level ultrasound examination. It is not clear whether parental behavior following a diagnosis based on ultrasound are comparable to a decision made by parents following other methods of prenatal diagnosis. Several authors [3.4] found a positive association between ultrasound visualization of an anomaly caused by a chromosome abnormality, and a decision of pregnancy termination and concluded that visualization of Table 4 the defects may have a considerable impact on the couple’s ability to absorb and comprehend the situation. Another factor found to favor expectant parents’ decision to termi: nate pregnancies was counseling by an obstetrician as compared to genetic counseling [4]. In our setting all, counseling was performed by the same team which in cludes both professionals ‘The findings show that in this high risk, traditional population, more than half of the couples will not opt for pregnancy termination due to a diagnosis of severe anoma- ly at the third level ultrasound clinic, mainly because the advanced stage of the pregnancy. Therefore, suitable health programs for any society where abortions are not common- ly acceptable, should focus on as early sonographic diagnosis as possible, with subsequent genetic counseling, to allow a timed decision on pregnancy termination. 5. Condensation Early gestational week at diagnosis of major fetal ‘malformations as well as a previous uncompleted pre- ‘gnancies were found to predict the decision on a pregnancy termination in a traditional society of Israeli Arab Bedouins. Characteristic Tonal n= 05; Teolated defeos @ cov “Tetrslogy of Fallot Venice septa defect Atso-ventricular canal “Transposition of great vessels stein anomaly ‘Agenesis of polmonary artery Hypoplastc left heart es Spina bide ‘Anencephaly Encephalocele Hydrocephalus Genitourinary Potter syndrome Bilateral polyeystic Kidney Extrophy of bladder resin of ureter and hydronephrosis Unspecified Musculosceletal Dwvartism Osteopetosis Defcieney of upper tim Reietion deformity of lower lr Hyérops fetais ‘Abdominal wal, prone belly Multiple defects 4 CCVM= congenital cardiovascular malformations Cl ‘Terminated n= Not terminated n= 76 1% 3m 366% 64% 100% 50% 50s 25% 75% 100% 100% 100% eral nerve system, 6 E. Sheiner etal. | European Joumal of Obsetrics & Gynecology and Reproductive Biology 76 (1998) 141~ 146 Appendix 1 Fetal defects A list of the fetal defects, by decision to terminate or continue the pregnaney (n=125) Table 4 References {11 Furlong RM. Black RB. Pregnancy termination for genetic indica- tions: the impact on families, Social Work Health Cae 1985;10:17~ M. (21 Kenyon SL, Hackett GA, Campbell $. Temnination of pregnancy following diagnosis of fetal malformation: the need for improved follow up services. Cin Obstet Gynecol 1988:31:97-100. Drigan A. Greb A. Johnson MP, Krivehenia EL. Ublmaan WR, Moghissi KS, Evans 1 Determinants of paremtal decisions 0 abort for chromosome abnormalities. Prenatal Diagn 1990:10:491-6 Holmes Siedle M, Ryynanen M, Lindenbaum RH, Prenatal dei- sions regarding termination of pregnancy following prenatal de- tection of sex chromosome abnormality, Prenatal Diagn 1987:7:239-$4, Denayer L, Evers Kicbooms G, De Boek K, Van den Berghe H. Reproductive decision making of aunts and uncles of a child with cystic fibrosis: Genetic risk perception and attitudes towand cartier ‘entification and prenatal diagnosis. Am J Med Genet 199248: 104-11 BI (4 15) {6} Weizzman D. Shoham-Vari , Belmaker I, Siton ¥, Carmi R. Factors tfecting utilization of prenatal diagnostic tests in a tational society undergoing a rapid social change. Paper presented at the Israeli Epidemiological Society, June Ist 1997, Tels Avi, Isa (7 Seott DA, Carmi R, Ebedour K, YosetsbergS, Stone EM, Sheffield VC. An’ autosomal recessive ‘nonsyndromic-heaing. Toss. locus ienitied by DNA pooling using two inbred Bedouin kindreds, Am J Med Genet 1996:59:385 91 [8] Carmi R. Rokhlina T, Kwitek-Black AF, Elbedour K, NisimaraD, Stone EM, Sheffield VC. Use of a DNA pooling strategy to identify 44 human abesty syndrome locus on chromosome 15. Hum Mol Genet 1995:69-13, (9) Jaber L, Bailey-Wilson JE, HaYeia M, Hemandee J, Shoat M. CConsanguineous matings in an Israeli Atab community. Arch Pediatr Adolese Med 1994;148:412-5 {10} Benn PA, Hsu LY, Carlson A, Tannenbaum HL. The centralized ‘renatal genetics sereening program of New York City I: the est, 7,000 cases. Am J Med Genet 1985:20:369-84 (12) Verp MS, Bombard AT. Simpson JL, Ehas §. Parental decision following prenatal diagnosis of feta chromosome abnormality. Am 4 Med Genet 1998:20'61 3-22 (21 Shoham-Vardi I, Levi E, Belmaker 1, Mazor M, Goldstein D. Utilization of prenatal services and bin outcomes’ & eommunity- bused study in Israel. Paediatr Perinat Epidemiol 1997511:271-86, [US] Fletcher JC, Evans MI. Maternal bonding i ear fetal ultrasound examinations. New Engl J Med 1983:308:392-3, [14] Pryde PG, ts NB. Halk M, Johnson MP, Odgers AE. Evans MI Determinants of parental decision t© abort oF continue after non: aneuploid ultasound-

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