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Prenatally diagnosed fetal conditions in the age of fetal care: does who counsels matter?

Published:February 16, 2012DOI:https://doi.org/10.1016/j.ajog.2012.01.026

      Objective

      We sought to characterize practices and attitudes of maternal-fetal medicine (MFM) and fetal care pediatric (FCP) specialists regarding fetal abnormalities.

      Study Design

      This was a self-administered survey of 434 MFMs and FCPs (response rate: MFM 60.9%; FCP 54.2%).

      Results

      For Down syndrome (DS), congenital diaphragmatic hernia (CDH), spina bifida: MFMs were more likely than FCPs to support termination (DS 52% vs 35%, P < .001; CDH 49% vs 36%, P < .001; spina bifida 54% vs 35%, P < .001), and consider offering termination options as highly important (DS 90% vs 70%, P < .001; CDH 88% vs 69%, P < .001; spina bifida 88% vs 70%, P < .001). For DS only, MFMs were less likely than FCPs to think that pediatric specialist consultation should be offered prior to a decision regarding termination (54% vs 75%, P < .001). MFMs reported report higher termination rates among patients only for DS (DS 51% vs 21%, P < .001).

      Conclusion

      MFM and FCP specialists' counseling attitudes differ for fetal abnormalities.

      Key words

      The clinical management of women with pregnancies complicated by congenital fetal conditions in the United States has become increasingly multidisciplinary. Traditionally, obstetricians or maternal-fetal medicine (MFM) specialists have managed these pregnancies in affiliation with general hospitals or women's and infants' hospitals. Now, other models of prenatal care have emerged nationally within “fetal care” or “fetal treatment” centers in children's hospitals and/or under the leadership of pediatric specialists, with or without MFM collaboration.
      • Brown S.D.
      • Lyerly A.D.
      • Little M.O.
      • Lantos J.D.
      Pediatrics-based fetal care: unanswered ethical questions.
      American College of Obstetricians and Gynecologists/American Academy of Pediatrics
      ACOG committee opinion no. 501: maternal-fetal intervention and fetal care centers.
      For Editors' Commentary, see Contents
      See related editorial, page 374
      These changes in clinical practice environments raise issues of whether pregnant patients will receive different information or clinical options depending on their locus of care. Differences have been demonstrated in attitudes and counseling among prenatal health care providers from different disciplines, including pediatric and obstetric specialists outside the United States.
      • Marteau T.
      • Drake H.
      • Bobrow M.
      Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
      • Norup M.
      Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
      • Bijma H.H.
      • Schoonderwaldt E.M.
      • van der Heide A.
      • Wildschut H.I.
      • van der Maas P.J.
      • Wladimiroff J.W.
      Ultrasound diagnosis of fetal anomalies: an analysis of perinatal management of 318 consecutive pregnancies in a multidisciplinary setting.
      • Carnevale A.
      • Lisker R.
      • Villa A.R.
      • Casanueva E.
      • Alonso E.
      Counseling following diagnosis of a fetal abnormality: comparison of different clinical specialists in Mexico.
      • Zahed L.
      • Nabulsi M.
      • Tamim H.
      Attitudes towards prenatal diagnosis and termination of pregnancy among health professionals in Lebanon.
      • de Silva D.C.
      • Jayawardana P.
      • Hapangama A.
      • et al.
      Attitudes toward prenatal diagnosis and termination of pregnancy for genetic disorders among healthcare workers in a selected setting in Sri Lanka.
      However, no analysis has yet characterized the practices of these new fetal care pediatric (FCP) centers, or assessed how their provision of prenatal health care differs from that of MFM practices.
      The purpose of this study was to characterize the practices of FCP and MFM specialists in the United States, and to determine whether these specialists' counseling attitudes and clinical recommendations differ when fetal abnormalities are diagnosed. We explored these questions using a survey completed in 2010 of pediatric and MFM specialists working within fetal care and fetal treatment centers in the United States, and their surrounding geographic regions. This analysis characterizes physician practice, and compares experiences and perspectives about prenatal counseling when congenital fetal conditions are diagnosed.

      Materials and Methods

      The research team designed the survey with fieldwork conducted through self-administered mail survey and telephone reminders by Harris Interactive during the period Nov. 13, 2009, through Feb. 5, 2010. The study protocol, and instrument and recruitment materials were approved by the Children's Hospital Boston Clinical Investigation Committee.

      Sample and list development

      We used the American Medical Association (AMA) Masterfile to select a national sample of MFM specialists drawn in proportion to their representation in the same states in which we identified fetal care centers. We identified 454 MFM specialists (designated as either primary or secondary specialty) in 21 states (matched to fetal care center distribution by last 3 ZIP code digits). The masterfile did not indicate whether MFM specialists practiced in fetal care centers—this information was collected in our survey.
      No available source (including the AMA Masterfile) provided a comprehensive listing of physicians practicing in pediatric specialties in fetal care or fetal treatment centers. Therefore, we developed a comprehensive listing using a 2-stage process. First, we identified all fetal care, fetal therapy, and fetal treatment centers from national listings of related research centers, professional organizations, and children's hospitals, and Internet searches using the terms “fetal care,” “fetal treatment,” “fetal therapy,” and “fetal surgery.”
      Fetal Hope Foundation
      Foundation homepage.
      North American Fetal Therapy Network
      NAFTNet homepage.
      • Comarow A.
      America’s best children’s hospitals.
      We searched those centers' institutional websites and physician directories to identify pediatric subspecialists who provided fetal diagnostic or treatment services in the centers. Centers were variably composed. Specialties included urology, nephrology, cardiology, neurology, neurosurgery, genetics, orthopedics, surgery, radiology/imaging, anesthesiology, neonatology, and perinatology. We confirmed contact information through Internet searches and telephone calls to the centers, and verified physician contact information with the AMA Masterfile. The resultant file included 416 FCPs in 21 states: Arizona, California, Connecticut, Florida, Illinois, Kansas, Maryland, Massachusetts, Michigan, Minnesota, Missouri, New York, North Carolina, Ohio, Pennsylvania, Rhode Island, Tennessee, Texas, Utah, Washington, and Wisconsin.

      Survey instrument development

      We developed the instrument using existing literature on professionals' knowledge, attitudes, and self-reported behaviors toward disabilities, intrauterine interventions, conscientious objection, prenatal diagnosis, and pregnancy termination.
      • Marteau T.
      • Drake H.
      • Bobrow M.
      Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
      • Norup M.
      Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
      • Zahed L.
      • Nabulsi M.
      • Tamim H.
      Attitudes towards prenatal diagnosis and termination of pregnancy among health professionals in Lebanon.
      • de Silva D.C.
      • Jayawardana P.
      • Hapangama A.
      • et al.
      Attitudes toward prenatal diagnosis and termination of pregnancy for genetic disorders among healthcare workers in a selected setting in Sri Lanka.
      • Antonak R.F.
      • Livneh H.
      Measurement of attitudes towards persons with disabilities.
      • Bell M.
      • Stoneman Z.
      Reactions to prenatal testing: reflection of religiosity and attitudes toward abortion and people with disabilities.
      • Curlin F.A.
      • Lawrence R.E.
      • Chin M.H.
      • Lantos J.D.
      Religion, conscience, and controversial clinical practices.
      • Drake H.
      • Reid M.
      • Marteau T.
      Attitudes towards termination for fetal abnormality: comparisons in three European countries.
      • Lo B.
      Resolving ethical dilemmas.
      • Lyerly A.D.
      • Cefalo R.C.
      • Socol M.
      • Fogarty L.
      • Sugarman J.
      Attitudes of maternal-fetal specialists concerning maternal-fetal surgery.
      • Ormond K.E.
      • Gill C.J.
      • Semik P.
      • Kirschner K.L.
      Attitudes of health care trainees about genetics and disability: issues of access, health care communication, and decision making.
      • Rebagliato M.
      • Cuttini M.
      • Broggin L.
      • et al.
      Neonatal end-of-life decision making: physicians' attitudes and relationship with self-reported practices in 10 European countries.
      • Wertz D.C.
      • Fletcher J.C.
      • Mulvihill J.J.
      Medical geneticists confront ethical dilemmas: cross-cultural comparisons among 18 nations.
      We conducted key informant telephone interviews with 8 MFM and FCP specialists in different regions nationally to assess relevant survey domains. Items assessing attitudes about pregnancy termination for congenital fetal conditions were adapted from health care provider surveys about prenatal diagnosis and termination for various conditions.
      • Marteau T.
      • Drake H.
      • Bobrow M.
      Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
      • Norup M.
      Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
      • Carnevale A.
      • Lisker R.
      • Villa A.R.
      • Casanueva E.
      • Alonso E.
      Counseling following diagnosis of a fetal abnormality: comparison of different clinical specialists in Mexico.
      • Zahed L.
      • Nabulsi M.
      • Tamim H.
      Attitudes towards prenatal diagnosis and termination of pregnancy among health professionals in Lebanon.
      • de Silva D.C.
      • Jayawardana P.
      • Hapangama A.
      • et al.
      Attitudes toward prenatal diagnosis and termination of pregnancy for genetic disorders among healthcare workers in a selected setting in Sri Lanka.
      • Wertz D.C.
      • Fletcher J.C.
      • Mulvihill J.J.
      Medical geneticists confront ethical dilemmas: cross-cultural comparisons among 18 nations.
      Hypothetical scenarios about intrauterine interventions were generalized from an MFM survey about maternal-fetal surgery.
      • Lyerly A.D.
      • Cefalo R.C.
      • Socol M.
      • Fogarty L.
      • Sugarman J.
      Attitudes of maternal-fetal specialists concerning maternal-fetal surgery.
      Questions regarding the provision of information about prenatally diagnosed conditions were based on scenarios and scales from a survey of health care trainees' attitudes toward disabilities.
      • Ormond K.E.
      • Gill C.J.
      • Semik P.
      • Kirschner K.L.
      Attitudes of health care trainees about genetics and disability: issues of access, health care communication, and decision making.
      A draft of the instrument was reviewed by a panel of external experts in survey research, physician professionalism, bioethics, obstetrics, and pediatric developmental medicine. A final draft questionnaire was pretested with 10 physicians from the target eligible group to assess comprehension, completion time, and recruitment methods, and was also subject to internal timing and quality checks by Harris Interactive. The final survey instrument was 8 pages long, and included 49 questions incorporating 106 items. Self-administration time in pretests was approximately 20 minutes.

      Data collection

      Questionnaire packets were mailed in November 2009 using US Postal Service priority mail to 870 physicians. Initial packets contained the questionnaire, a cover letter explaining the survey, a postage-paid return envelope, and a $70 honorarium. Two additional postal contacts were made, with follow-up calls to persistent nonresponders to determine eligibility and encourage response.
      Response rates were calculated by dividing the number of completed surveys returned by the total mailed items less individuals who reported they no longer practiced, were not in practice relevant to the survey, or for whom a correct address–and therefore, study eligibility–could not be determined.

      Statistical analysis

      MFM specialist data were weighted by state (limited to select ZIP codes matching the FCP physician ZIP codes), age, and sex relative to the US population of physicians with a secondary or primary specialty of MFM.
      Data analyses were completed using SPSS version 18 (SPSS Inc, Chicago, IL). Bivariate analyses to assess response differences between MFMs and FCPs were conducted using χ2 tests for categorical variables and t tests for continuous variables. All statistical tests were 2-sided. We used multivariate logistic regression to determine if MFM/FCP differences persisted for our key dependent variables (pregnancy termination rates; appropriate timing of pediatric specialty referrals; and provision of information about pregnancy termination) when controlling for physician personal and professional characteristics, including sex, age, personal or family history of disability, race/ethnicity, gross income, support for pregnancy termination, academic medical center affiliation, fetal care treatment center affiliation and management, ownership of employment, onsite availability of first- or second-trimester termination, and number of patients with each provided diagnosis. Standard measures of religion, religiosity, political party, and political ideology were included in the survey, but the size of the sampled groups limited our ability to include these variables in regression models. This limitation seemed less important when, as discussed below, we did not detect differences between groups for these measures.

      Results

      Physician and practice characteristics

      In all, 242 MFM and 192 FCP specialists completed the survey, yielding response rates of 60.9% and 54.2%, respectively. Table 1 shows physician characteristics. Compared to MFMs, FCPs were younger, more likely male, and more likely to work within nonprofit and/or academic centers.
      TABLE 1Physician characteristics
      CharacteristicsFCP (%), n = 192MFM (%), n = 242P valueMFM in fetal care center (%), n = 124MFM not in fetal care center (%), n = 113P value
      Sex
      Significant difference (P <.05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
       Male65555755
       Female3143.024344.83
       No answer5202
      Age, y
      Significant difference (P <.05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
       Mean49.852.0.0253.251.0.10
       Median495354.052.0
      Ethnicity/race
      Significant difference (P <.05) between MFMs affiliated and not affiliated with fetal care centers.
       White, non-Hispanic/Latino73747379
       Black, non-Hispanic/Latino2333
       Hispanic/Latino (white or black)3314
       Asian or Pacific Islander148.1489.03
       Other2591
       Refused3553
       No answer4221
      Gross annual income
       <$100,0003573
       $100,000-199,9991711139
       $200,000-299,99926252527
       $300,000-399,9991623.142621.29
       $400,000-499,99918151416
       ≥$500,00011131016
       No answer99410
      Employment
      Significant difference (P <.05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P <.05) between MFMs affiliated and not affiliated with fetal care centers.
       Self-employed010< .001416.004
       Employed by physician practice2529.392435.07
       Employed by hospital4632.0023630.36
       Employed by contract corporation96.1493.03
       Other1824.172918.04
      Ownership of employment
      Significant difference (P <.05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P <.05) between MFMs affiliated and not affiliated with fetal care centers.
       For profit823< .0012226.45
       Not for profit8160< .0016853.04
       Religious order or organization85.2974.47
       Physician owners114< .001821.004
      Work setting/AMC affiliation
      Significant difference (P <.05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P <.05) between MFMs affiliated and not affiliated with fetal care centers.
       Hospital, within AMC7546< .0015540.02
       Hospital, affiliated with AMC1114.591217.19
       Hospital, not affiliated with AMC17.00458.27
       Ambulatory, within AMC48.1298.35
       Ambulatory, affiliated with AMC35.2965.37
       Ambulatory, not affiliated with AMC212< .001717.02
       Other38.0398.35
      Type of practice
      Significant difference (P <.05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P <.05) between MFMs affiliated and not affiliated with fetal care centers.
       Solo0879
       Single specialty group with <10 doctors24342050
       Single specialty group with ≥10 doctors2819< .001317< .001
       Multispecialty group with <10 doctors1425
       Multispecialty group with ≥10 doctors43332929
       No answer5200
      Specialty
       Surgical23
       Pediatric52
       Other8
       No answer17
      Disability
       Yes139796
       No9596.1334.44
       No answer4100
      Family member with disability
       Yes27252725
       No6874.577375.74
       No answer5100
      Missing answers are excluded from analysis. Proportions may not total 100 due to rounding and multiple response.
      AMC, academic medical center; FCP, fetal care pediatric; MFM, maternal-fetal medicine.
      Brown. Physician attitudes regarding fetal abnormalities. Am J Obstet Gynecol 2012.
      a Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      b Significant difference (P < .05) between MFMs affiliated and not affiliated with fetal care centers.
      MFM and FCP respondents did not differ significantly regarding political affiliation (MFM: 36% Democrat, 19% Republican, 31% independent vs 44%, 15%, 27%, respectively, for FCPs), religious affiliation (MFM: 22% Roman Catholic, 19% Jewish, 31% other Christian vs 26%, 18%, and 25%, respectively, for FCP), religiosity (strength of religious influence in daily work life; MFM 42% very/somewhat strong vs FCP 39%), or political ideology (MFM: 42% liberal, 21% conservative vs 45% and 21%, respectively, for FCPs). As differences between MFM and FCP groups were not seen for these variables and given that sample size limited the number of variables we could use for modeling, these variables were not included in our regression equations. We focused our analysis on the personal and professional characteristics shown in TABLE 1, TABLE 2.
      TABLE 2Clinical activities at place of work
      ActivitiesFCP (%), n = 192MFM (%), n = 242P valueMFM in fetal care center (%), n = 124MFM not in fetal care center (%), n = 113P value
      Affiliation with fetal care or treatment center
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
       No6480
       Yes9050< .001100N/AN/A
       No answer420
        Center managed mainly by… (fetal care affiliates only)
         Pediatricians1716.7116
         Pediatric surgical specialists
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      4514< .00114
         MFM specialists
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      6282< .00182
         Other98.608
        Location (fetal care affiliates only)
         General hospital/medical center
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      3758.00158
         Women's/women and infants' hospital2122.7523
         Children's hospital
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      4818< .00118
         Free-standing clinic or outpatient facility
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      18.0058
         Multisite68.418
      Counseling provided about pregnancies where fetus has suspected or confirmed abnormality
       On site
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      9099< .00199100.33
       Off site57.0387.86
       Neither provide nor refer
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      50< .00100N/A
      Interventions available on site
       Pregnancy termination, 1st trimester
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      3051< .0015250.56
       Pregnancy termination, ≥2nd trimester
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      2753< .0015452.33
       Percutaneous fetal blood transfusions
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P < .05) between MFMs affiliated and not affiliated with fetal care centers.
      4770< .0017962.009
       Percutaneous image-guided (nonlaparoscopic) intrauterine fetal procedures other than blood transfusions
      Significant difference (P < .05) between MFMs affiliated and not affiliated with fetal care centers.
      5451.126340.001
       Laparoscopic intrauterine fetal surgery
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P < .05) between MFMs affiliated and not affiliated with fetal care centers.
      4516< .001266< .001
       Open uterine fetal surgery
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P < .05) between MFMs affiliated and not affiliated with fetal care centers.
      366< .001111.001
       Cesarean section for fetal or maternal benefit
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      6089< .0019385.08
       Delivery by EXIT
      Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      ,
      Significant difference (P < .05) between MFMs affiliated and not affiliated with fetal care centers.
      6648< .0016137.001
      Missing answers are excluded from analysis. Proportions may not total 100 due to rounding and multiple response.
      EXIT, ex utero intrapartum treatment; FCP, fetal care pediatric; MFM, maternal-fetal medicine; N/A, not applicable.
      Brown. Physician attitudes regarding fetal abnormalities. Am J Obstet Gynecol 2012.
      a Significant difference (P < .05) between FCP and MFM specialists (using χ2 tests for categorical and t tests for continuous variables);
      b Significant difference (P < .05) between MFMs affiliated and not affiliated with fetal care centers.
      Table 2 shows several aspects of respondents' clinical activities. In all, 90% of FCPs and 50% of MFMs reported fetal care or treatment center affiliation. Among respondents with a fetal care center affiliation, FCPs were significantly more likely than MFMs to practice in a center primarily managed by a pediatric surgeon. MFMs were more likely to practice in a center primarily managed by an MFM specialist. Among physicians with a fetal care center affiliation, FCPs were significantly more likely to practice within a children's hospital, while MFMs were more likely to practice in a general hospital/medical center.
      Virtually all MFMs surveyed provide counseling personally to women about pregnancies with suspected or confirmed fetal abnormalities. In all, 90% of FCPs either provide their own counseling and/or practice in centers where colleagues provide counseling. Among FCP respondents, 5% said they neither provide nor refer patients for these services, but they do provide patient care in these centers.
      Significantly more MFMs practice in sites where first- and second-trimester pregnancy termination is available. Of MFM respondents, 20% provide these services to patients, whereas 1% of FCPs reported they perform terminations (not shown). In all, 45% of FCPs, compared to 4% of MFMs, reported that they neither provide nor refer patients for pregnancy termination (data not shown).
      Table 2 also shows maternal-fetal interventions available on site. Specialists differ significantly for all but percutaneous image-guided intrauterine fetal procedures.
      Table 3 reports bivariate results regarding respondents' clinical experiences and professional attitudes in treating pregnant patients in the setting of fetal Down syndrome (DS), congenital diaphragmatic hernia (CDH), and spina bifida. A greater proportion of MFMs see patients for each condition. Among physicians who do see these patients, the average number of patients in a typical year is similar between FCPs and MFMs for DS and spina bifida, but FCPs see more CDH cases.
      TABLE 3Clinical experiences and professional attitudes regarding fetal conditions
      Down syndromeCDHSpina bifida
      VariableFCP (%), n = 192MFM (%), n = 242P valueFCP (%), n = 192MFM (%), n = 242P valueFCP (%), n = 192MFM (%), n = 242P value
      See patients pregnant with fetus with diagnosis in given year
      Significant difference (P < .05) between FCP and MFM specialists for Down syndrome (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for CDH (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for spina bifida (using χ2 tests for categorical and t tests for continuous variables);
       Yes679364886092
       No242< .001257< .001283< .001
       No answer95115125
      Mean no. of patients with fetus with diagnosis in typical year of practice (of those who see patients with diagnosis)
      Significant difference (P < .05) between FCP and MFM specialists for CDH (using χ2 tests for categorical and t tests for continuous variables);
      9.6111.49.109.565.43.0017.466.59.31
      Patient outcomes (mean percentage of patients/y)
      Significant difference (P < .05) between FCP and MFM specialists for Down syndrome (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for CDH (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for spina bifida (using χ2 tests for categorical and t tests for continuous variables);
       Terminate pregnancy2151< .001
      Variables that remained significant in multivariate modeling as described in text. Multivariate analyses are not presented in this table. Termination rates, timing of pediatric consultation, and provision of information about termination were key outcome variables in multivariate modeling. Numbers of patients seen and patients/y, and support for patient decision were independent variables.
      1728< .0012942< .001
       Have intrauterine fetal treatment (other than termination)1.14.63.51111.7711.43.9168.016.48.458
      Pediatric consult for pregnant women should take place. . .
      Significant difference (P < .05) between FCP and MFM specialists for Down syndrome (using χ2 tests for categorical and t tests for continuous variables);
       Prior to decision to terminate765482808277
       Only if pregnancy continues1017912815
       Only after delivery46< .001
      Variables that remained significant in multivariate modeling as described in text. Multivariate analyses are not presented in this table. Termination rates, timing of pediatric consultation, and provision of information about termination were key outcome variables in multivariate modeling. Numbers of patients seen and patients/y, and support for patient decision were independent variables.
      10.5511.13
       No consult necessary2160101
       No answer878787
      Importance of providing information for options for pregnancy termination at different stages of pregnancy
      Significant difference (P < .05) between FCP and MFM specialists for Down syndrome (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for CDH (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for spina bifida (using χ2 tests for categorical and t tests for continuous variables);
       More important (4-5 on 5-point scale)7090< .001
      Variables that remained significant in multivariate modeling as described in text. Multivariate analyses are not presented in this table. Termination rates, timing of pediatric consultation, and provision of information about termination were key outcome variables in multivariate modeling. Numbers of patients seen and patients/y, and support for patient decision were independent variables.
      6988< .001
      Variables that remained significant in multivariate modeling as described in text. Multivariate analyses are not presented in this table. Termination rates, timing of pediatric consultation, and provision of information about termination were key outcome variables in multivariate modeling. Numbers of patients seen and patients/y, and support for patient decision were independent variables.
      7088< .001
      Variables that remained significant in multivariate modeling as described in text. Multivariate analyses are not presented in this table. Termination rates, timing of pediatric consultation, and provision of information about termination were key outcome variables in multivariate modeling. Numbers of patients seen and patients/y, and support for patient decision were independent variables.
       Less important (≤3 on 5-point scale)238239239
       No answer728272
      Support of patient decision to terminate pregnancy (in role as health professional)
      Significant difference (P < .05) between FCP and MFM specialists for Down syndrome (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for CDH (using χ2 tests for categorical and t tests for continuous variables);
      Significant difference (P < .05) between FCP and MFM specialists for spina bifida (using χ2 tests for categorical and t tests for continuous variables);
       Support355236493554
       Neutral4643< .0013946< .0013842< .001
       Oppose102123123
       No answer93132142
      Missing answers are excluded from analysis. Proportions may not total 100 due to rounding.
      CDH, congenital diaphragmatic hernia; FCP, fetal care pediatric; MFM, maternal-fetal medicine.
      Brown. Physician attitudes regarding fetal abnormalities. Am J Obstet Gynecol 2012.
      a Significant difference (P < .05) between FCP and MFM specialists for Down syndrome (using χ2 tests for categorical and t tests for continuous variables);
      b Significant difference (P < .05) between FCP and MFM specialists for CDH (using χ2 tests for categorical and t tests for continuous variables);
      c Significant difference (P < .05) between FCP and MFM specialists for spina bifida (using χ2 tests for categorical and t tests for continuous variables);
      d Variables that remained significant in multivariate modeling as described in text. Multivariate analyses are not presented in this table. Termination rates, timing of pediatric consultation, and provision of information about termination were key outcome variables in multivariate modeling. Numbers of patients seen and patients/y, and support for patient decision were independent variables.
      Respondents were asked to estimate the pregnancy termination rates among their patients for each aforementioned fetal diagnosis. In bivariate analyses, MFMs reported a >2 times higher pregnancy termination rate among patients carrying a fetus with DS and significantly higher rates for CDH and spina bifida. The MFM:FCP odds ratio for higher rates of termination for DS was 2.670, (95% confidence interval, 1.183–6.023; P = .02). Despite our samples' sex difference, sex was not significant in predicting pregnancy termination rates for DS (male:female odds ratio, 0.622; 95% confidence interval, 0.302–1.284; P = .2). Specialty was not a significant predictor of higher termination rates in multivariate models for CDH and spina bifida.

      Professional attitudes

      As shown in Table 3, respondents were asked how strongly they would support or oppose–in their role as a health professional providing consultation to a married couple–a couple's decision to terminate a 19-week pregnancy with diagnosed fetal DS, CDH, or spina bifida. MFMs were more likely than FCPs to somewhat or strongly support a decision to terminate the pregnancy for all 3 conditions. This question served as an independent variable for our multivariate models.
      We asked about respondents' attitudes regarding the appropriateness and timing of patient consultations by pediatric specialists with relevant expertise for each fetal condition (Table 3). FCPs were significantly more likely than MFMs to report that pediatric-specialist consultation with the pregnant woman should take place prior to the decision to continue or terminate a pregnancy with DS. This finding persisted in regression analysis (not shown).
      Respondents were asked their attitudes about the importance (1 = low importance, 5 = high importance) of offering certain information when a married couple seeks guidance on whether to continue a pregnancy in the setting of DS, CDH, and spina bifida. Although >90% of MFMs and FCPs responded that offering information on the clinical characteristics of the conditions is of high importance (data not shown), MFMs were significantly more likely than FCPs to respond for each condition that offering options for pregnancy termination at different stages of pregnancy is of high importance (Table 3). Logistic regression models (not shown) confirm that these differences persist between MFMs and FCPs for all 3 conditions.
      We also assessed attitudes about intrauterine fetal interventions by asking physicians to respond to clinical vignettes in which a couple has decided to continue their pregnancy (Table 4). The vignettes involve a 19-week fetus with a nonlethal condition that will likely need ≥1 major postnatal surgeries. The expected outcome with postnatal surgery is severe intellectual and/or physical disability. Respondents were asked to review 2 hypothetical prenatal procedures to treat the condition and provide recommendations. One was an open intrauterine procedure with obstetrical and perinatal risks commonly associated with intrauterine spina bifida repair.
      • Lyerly A.D.
      • Cefalo R.C.
      • Socol M.
      • Fogarty L.
      • Sugarman J.
      Attitudes of maternal-fetal specialists concerning maternal-fetal surgery.
      The second was a minimally invasive procedure with uncommon risks. For each procedure, there were 2 possible postnatal expected outcomes: high probability of moderate or mild disability. FCPs and MFMs did not differ regarding the likelihood of making recommendations for or against either procedure, regardless of expected outcome.
      TABLE 4Intervention scenarios
      Would or would not recommend procedure 1 in given scenario, %Definitely would recommend, %Probably would recommend, %Probably would not recommend, %Definitely would not recommend, %No answer, %P value
      Neonate has high probability of moderate intellectual and/or physical disability
       FCP12274588.77
       MFM9304589
      Neonate has high probability of mild intellectual and/or physical disability
       FCP13453057.89
       MFM11492856
      Would or would not recommend procedure 2 in given scenario, %
      Neonate has high probability of moderate intellectual and/or physical disability
       FCP22373236.69
       MFM24333257
      Neonate has high probability of mild intellectual and/or physical disability
       FCP32511115.72
       MFM27531316
      Scenario given: Assume you are meeting a couple (married, both age 26 y). Woman is pregnant with 19-week fetus with nonlethal condition that will likely need ≥1 major postnatal surgeries. Condition commonly results in severe intellectual and/or physical disability. Couple has decided to continue pregnancy. Please review following hypothetical procedures and outcomes and provide your likely recommendations. Assuming this procedure is available and mortality for fetus or neonate is low, how strongly would you recommend this procedure in setting of outcomes noted?
      Procedure 1: Prenatal open intrauterine surgical procedure has been developed to repair condition. Common surgery related obstetrical risks include: oligohydramnios, premature rupture of membranes, preterm uterine contractions, premature delivery, and pulmonary edema. After procedure, patients are typically hospitalized for 1-2 wk until delivery. Less common complications include uterine rupture, placental abruption, maternal small bowel obstruction, maternal blood transfusion, pregnancy loss, and need for cesarean sections for future pregnancies.
      Procedure 2: Prenatal, minimally invasive procedure has been developed to repair condition. Procedure-related obstetrical risks include uncommon (approximately 3%) risks of intrauterine infection, maternal septicemia, and pregnancy loss.
      Proportions may not total 100 due to rounding.
      FCP, fetal care pediatric; MFM, maternal-fetal medicine.
      Brown. Physician attitudes regarding fetal abnormalities. Am J Obstet Gynecol 2012.

      Comment

      This study characterized the practices of FCP specialists and MFM specialists and evaluated whether their counseling and recommendations differed for fetal abnormalities. We found significant differences between MFMs and FCPs in their clinical practices and many of their prenatal counseling attitudes. For each congenital condition studied, FCPs and MFMs differed significantly regarding their support for pregnancy termination, and the importance they ascribed to provision of information about termination. However, MFMs and FCPs differed only for DS in their attitudes regarding whether FCP consultation should be offered before patients decide about pregnancy termination, and only for DS in their reported termination rates among their patients. FCPs and MFMs did not make different recommendations regarding intrauterine interventions. Further, they did not report different proportions of patients who choose prenatal interventions for CDH or spina bifida.
      Published data are scant regarding practices within pediatric-based fetal care centers, and how obstetric and pediatric providers' attitudes and recommendations may differ regarding fetal conditions.
      • Brown S.D.
      • Lyerly A.D.
      • Little M.O.
      • Lantos J.D.
      Pediatrics-based fetal care: unanswered ethical questions.
      • Marteau T.
      • Drake H.
      • Bobrow M.
      Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
      • Norup M.
      Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
      • Carnevale A.
      • Lisker R.
      • Villa A.R.
      • Casanueva E.
      • Alonso E.
      Counseling following diagnosis of a fetal abnormality: comparison of different clinical specialists in Mexico.
      In an age when both open intrauterine surgery and pregnancy termination are options when certain fetal conditions are diagnosed, empirical analysis of the scope and impact of any provider differences is crucial. To our knowledge, this is the first study to compare the prenatal clinical practices and attitudes of FCP and MFM specialists. Prenatal diagnosis and intervention continue to evolve rapidly, and these data provide an important baseline about practice organization and clinical practice.
      Our study has some limitations. First, our FCP listing, while current at the time of the survey, may have excluded some physicians in this evolving field. Our slightly lower FCP response rate may have resulted from imprecision in identifying the relevant physicians. Our sample sizes limited our multivariate analyses, especially regarding geography, heterogeneous FCP composition, and the complexities of physicians' personal, religious, and political attitudes. Still, many of the FCP/MFM differences, especially for DS, persisted in our regression models. Selection and response biases are concerns in surveys such as ours. To address such possible biases, we used weighting to correct for nonresponse bias by specialty group and geography. Survey length can also affect responses, although the 20-minute administration time was relatively standard for such questionnaires. We recognize that self-reports of physician practice and attitudes may not reflect actual practice. In addition, many questions we used regarding clinical care, while carefully developed and tested, contained language that could be interpreted differently by different providers. We asked, for example, about support for patient choices, yet while the word “support” was undefined, its use is common in scales of physician attitudes. We have no reason to believe FCPs and MFMs would interpret the language differently. Because we did not include a question about abortion apart from the context of fetal abnormalities, we cannot separate attitudes regarding these conditions from beliefs about abortion, per se. It is possible that attitudes and practices reported by MFMs in the 21 states sampled here may not represent those of MFMs in states without fetal care centers. Finally, because our study did not examine screening, but rather, referral once a prenatal diagnosis was made, we could not address any differences between specialties with regard to screening for congenital conditions.
      A few studies performed outside the United States have specifically compared obstetric and pediatric clinical specialists' attitudes regarding congenital fetal conditions.
      • Marteau T.
      • Drake H.
      • Bobrow M.
      Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
      • Norup M.
      Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
      • Carnevale A.
      • Lisker R.
      • Villa A.R.
      • Casanueva E.
      • Alonso E.
      Counseling following diagnosis of a fetal abnormality: comparison of different clinical specialists in Mexico.
      Unlike these studies, the present survey of exclusively US practitioners confirmed that most respondents cared for women with these pregnancies, and it controlled for important differences in personal demographic and practice characteristics. Further, we compared obstetric and pediatric practitioners' attitudes in an era when many more major pediatric centers house prenatal diagnosis and treatment services, and we compared practitioners' attitudes specifically regarding emerging intrauterine interventions.
      Numerous authors posit that differences in attitudes and counseling among prenatal health care providers may relate to divergent personal values, professional interests, clinical experiences, interpretation of the “facts” of the clinical situation, approaches to dealing with medical uncertainty, and different experiences with evolving tools for prenatal diagnosis and therapy.
      • Marteau T.
      • Drake H.
      • Bobrow M.
      Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
      • Norup M.
      Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
      • Bijma H.H.
      • Schoonderwaldt E.M.
      • van der Heide A.
      • Wildschut H.I.
      • van der Maas P.J.
      • Wladimiroff J.W.
      Ultrasound diagnosis of fetal anomalies: an analysis of perinatal management of 318 consecutive pregnancies in a multidisciplinary setting.
      • Carnevale A.
      • Lisker R.
      • Villa A.R.
      • Casanueva E.
      • Alonso E.
      Counseling following diagnosis of a fetal abnormality: comparison of different clinical specialists in Mexico.
      • Curlin F.A.
      • Lawrence R.E.
      • Chin M.H.
      • Lantos J.D.
      Religion, conscience, and controversial clinical practices.
      • Casper M.
      The making of the unborn patient: a social anatomy of fetal surgery.
      • Klein M.C.
      • Kaczorowski J.
      • Hall W.A.
      • et al.
      The attitudes of Canadian maternity care practitioners towards labor and birth: many differences but important similarities.
      • Lenard G.
      Ethical problems in prenatal diagnosis: pediatric considerations.
      • Bijma H.H.
      • Wildschut H.I.
      • van der Heide A.
      • van der Maas P.J.
      • Wladimiroff J.W.
      Obstetricians' agreement on fetal prognosis after ultrasound diagnosis of fetal anomalies.
      • Kon A.A.
      • Ackerson L.
      • Lo B.
      How pediatricians counsel parents when no “best-choice” management exists: lessons to be learned from hypoplastic left heart syndrome.
      • Brown S.D.
      • Truog R.D.
      • Johnson J.A.
      • Ecker J.L.
      Do differences in the AAP and ACOG positions on the ethics of maternal-fetal interventions reflect subtly divergent professional sensitivities to pregnant women and fetuses?.
      Some note that, due to the circumstances of their respective practices, pediatric and obstetric specialists may hold divergent views of their obligations to pregnant women and fetuses, adopt different attitudes in weighing maternal risk for fetal benefit, hold contrasting perceptions of life with disabilities, or possess differing concerns for the physical, psychological, and social well-being of pregnant women.
      • Brown S.D.
      • Lyerly A.D.
      • Little M.O.
      • Lantos J.D.
      Pediatrics-based fetal care: unanswered ethical questions.
      • Norup M.
      Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
      • Bijma H.H.
      • Schoonderwaldt E.M.
      • van der Heide A.
      • Wildschut H.I.
      • van der Maas P.J.
      • Wladimiroff J.W.
      Ultrasound diagnosis of fetal anomalies: an analysis of perinatal management of 318 consecutive pregnancies in a multidisciplinary setting.
      • Casper M.
      The making of the unborn patient: a social anatomy of fetal surgery.
      • Lenard G.
      Ethical problems in prenatal diagnosis: pediatric considerations.
      • Brown S.D.
      • Truog R.D.
      • Johnson J.A.
      • Ecker J.L.
      Do differences in the AAP and ACOG positions on the ethics of maternal-fetal interventions reflect subtly divergent professional sensitivities to pregnant women and fetuses?.
      The different degree to which FCPs and MFMs would support a patient's decision for pregnancy termination for all 3 congenital conditions aligns with these general hypotheses. The higher importance that MFMs attribute to provision of information about termination also comports with hypotheses about potentially divergent ethical and clinical sensitivities between obstetric and pediatric-based specialists. At issue is whether such differences affect patient decisions in light of long-standing concerns regarding providers' influence over obstetrical and neonatal outcomes in general,
      • Bijma H.H.
      • Schoonderwaldt E.M.
      • van der Heide A.
      • Wildschut H.I.
      • van der Maas P.J.
      • Wladimiroff J.W.
      Ultrasound diagnosis of fetal anomalies: an analysis of perinatal management of 318 consecutive pregnancies in a multidisciplinary setting.
      • Kon A.A.
      • Ackerson L.
      • Lo B.
      How pediatricians counsel parents when no “best-choice” management exists: lessons to be learned from hypoplastic left heart syndrome.
      • Lasswell S.M.
      • Barfield W.D.
      • Rochat R.W.
      • Blackmon L.
      Perinatal regionalization for very low-birth-weight and very preterm infants: a meta-analysis.
      • Kon A.A.
      Healthcare providers must offer palliative treatment to parents of neonates with hypoplastic left heart syndrome.
      • Prsa M.
      • Holly C.D.
      • Carnevale F.A.
      • Justino H.
      • Rohlicek C.V.
      Attitudes and practices of cardiologists and surgeons who manage HLHS.
      • Zeitlin J.
      • Di Lallo D.
      • Blondel B.
      • et al.
      Variability in caesarean section rates for very preterm births at 28-31 weeks of gestation in 10 European regions: results of the MOSAIC project.
      NIH Consensus Development Conference Panel
      National Institutes of Health Consensus Development conference statement; vaginal birth after cesarean: new insights March 8-10, 2010.
      • Stoll B.J.
      • Hansen N.I.
      • Bell E.F.
      • et al.
      Neonatal outcomes of extremely preterm infants from the NICHD neonatal research network.
      • Hanley G.E.
      • Janssen P.A.
      • Greyson D.
      Regional variation in the cesarean delivery and assisted vaginal delivery rates.
      • Foureur M.
      • Ryan C.L.
      • Nicholl M.
      • Homer C.
      Inconsistent evidence: analysis of six national guidelines for vaginal birth after cesarean section.
      • Wernovsky G.
      The paradigm shift toward surgical intervention for neonates with hypoplastic left heart syndrome.
      • Janvier A.
      • Barrington K.
      • Deschenes M.
      • Couture E.
      • Nadeau S.
      • Lantos J.
      Relationship between site of training and residents' attitudes about neonatal resuscitation.
      • Batton D.
      Resuscitation of extremely low gestational age infants: an advisory committee's dilemmas.
      • Batton D.G.
      Clinical report–antenatal counseling regarding resuscitation at an extremely low gestational age.
      • van den Berg M.
      • Timmermans D.R.
      • Kleinveld J.H.
      • et al.
      Are counselors' attitudes influencing pregnant women's attitudes and decisions on prenatal screening?.
      and, more specifically, over patients' decisions regarding pregnancy termination for fetal abnormalities.
      • Marteau T.
      • Drake H.
      • Bobrow M.
      Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
      Our data suggest that, for spina bifida and CDH, strong differences in clinical practices and in provider attitudes about abortion are not necessarily associated with differences in patient outcome, or in specific recommendations about important aspects of management, such as the timing of prenatal consultation with a pediatric specialist or the appropriateness of intrauterine interventions. These results are consistent with recent findings by Harris et al
      • Harris L.H.
      • Cooper A.
      • Rasinski K.A.
      • Curlin F.A.
      • Lyerly A.D.
      Obstetrician-gynecologists' objections to and willingness to help patients obtain an abortion.
      that many obstetricians remain willing to help patients receive services that the physicians find personally morally objectionable. Our data would imply that many pediatric-based fetal care specialists may be similarly disposed.
      We cannot explain why, after multivariate analysis, our reported termination rates differed between specialties for DS. The role of provider differences in practice and attitudes around DS cannot be excluded. Disability rights advocates have long asserted that obstetricians embed their counseling with negative or poorly informed messages about DS and skew their counseling toward termination.
      • Dixon D.P.
      Informed consent or institutionalized eugenics? How the medical profession encourages abortion of fetuses with Down syndrome.
      • Dresser R.
      Prenatal testing and disability: a truce in the culture wars?.
      • Parens E.
      • Asch A.
      Disability rights critique of prenatal genetic testing: reflections and recommendations.
      • Skotko B.G.
      With new prenatal testing, will babies with Down syndrome slowly disappear?.
      • Skotko B.G.
      Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers.
      Similar claims about spina bifida, however, are not supported by our results.
      • Bruner J.P.
      • Tulipan N.
      Tell the truth about spina bifida.
      • Bliton M.J.
      Ethics: “life before birth” and moral complexity in maternal-fetal surgery for spina bifida.
      Alternately, FCPs' counseling could underemphasize the challenges of DS, although pediatric specialists themselves may hold stereotypical misunderstandings about perceived quality of life for children with chronic health conditions.
      • Saigal S.
      • Stoskopf B.L.
      • Feeny D.
      • et al.
      Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents.
      • Marino B.S.
      • Tomlinson R.S.
      • Drotar D.
      • et al.
      Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease.
      • Morrow A.M.
      • Quine S.
      • Loughlin E.V.
      • Craig J.C.
      Different priorities: a comparison of parents' and health professionals' perceptions of quality of life in quadriplegic cerebral palsy.
      Many pediatric subspecialists who provide prenatal counseling may not perceive it as their role to discuss termination, but it is unclear why this would disproportionately affect DS counseling. However, given our finding that a considerable percentage of FCPs neither provide nor refer patients for pregnancy termination, nor think that offering information about termination is of high importance, the question remains of whether patients who obtain FCP counseling are receiving all information germane to their decision.
      Patient preferences may also have contributed to the reported outcome differences for DS. Patients who obtain FCP counseling for DS may be fundamentally less inclined toward pregnancy termination. We know of no empirical data regarding a priori preferences about pregnancy termination among patients who do and do not seek or receive referrals for FCP counseling. Anecdotal reports suggest that many patients who seek counseling for spina bifida in some FCP centers are determined to continue their pregnancies.
      • Bliton M.J.
      Ethics: “life before birth” and moral complexity in maternal-fetal surgery for spina bifida.
      Our data belie any association with termination rates for spina bifida. Additionally, patients and providers alike may view predominantly surgical and nonsurgical conditions differently. Attitudes and understanding may differ for conditions or disabilities perceived as predominantly physical rather than intellectual. Regardless, our study provides compelling data to warrant further research regarding providers' influence over patients' decisions about pregnancy termination for DS and other congenital conditions. Further analyses must assess whether specialists' provision of information prenatally is concordant with outcomes and quality of life.
      • Boulet S.L.
      • Boyle C.A.
      • Schieve L.A.
      Health care use and health and functional impact of developmental disabilities among US children, 1997-2005.
      • Schieve L.A.
      • Boulet S.L.
      • Boyle C.
      • Rasmussen S.A.
      • Schendel D.
      Health of children 3 to 17 years of age with Down syndrome in the 1997-2005 national health interview survey.
      The different termination rates for DS demonstrated here could also be influenced by patient referral patterns and the logistics of caring for pregnant women. Typically, fetal conditions are diagnosed initially by obstetricians, and often by MFMs. Patients who are immediately certain regarding termination might not then opt for a pediatrics referral. Diagnosis and referral does not characteristically occur in the opposite direction (ie, from pediatric specialist to MFM). Further research is needed to ascertain how often pregnant patients with various diagnoses self-refer to fetal care centers, are referred by their primary obstetrics providers, or are referred by an MFM whom they have seen first, and how such paths affect pregnancy outcomes.
      Finally, despite similar responses between physician groups regarding intrauterine interventions, intragroup data suggest that physician recommendations will remain highly variable regarding such procedures. Despite recently demonstrated benefits to intrauterine surgery,
      • Adzick N.S.
      • Thom E.A.
      • Spong C.Y.
      • et al.
      A randomized trial of prenatal versus postnatal repair of myelomeningocele.
      our data suggest that establishing efficacy for intrauterine procedures will not necessarily create uniformity in the related prenatal counseling recommendations, or agreement about how benefits and risks should be weighed. Further research is critical to understand how counseling balances information and recommendations about intrauterine interventions.
      Overall, our results suggest that prenatal counseling about congenital fetal conditions varies considerably between and within MFM and pediatric-based fetal care practices in the United States. Significant differences in attitudes and practices exist around pregnancy termination and the general counseling process. For some fetal conditions, such as spina bifida and CDH, our study suggests that such provider differences may not matter for pregnancy outcomes. For other conditions, such as DS, however, our study supports concerns that prenatal decisions and outcomes may sometimes reflect provider attitudes. Outcome differences may be confounded by patient self-selection and natural referral patterns. Further elucidation of these professional and patient-related factors is essential as a new structure for counseling prospective parents evolves toward increasing involvement of pediatric-based specialists and centers.

      Acknowledgments

      Survey review panel. Anne D. Lyerly, MD, Department of Social Medicine and Center for Bioethics, University of North Carolina; James M. Perrin, MD, Division of General Pediatrics and Massachusetts General Hospital Center for Child and Adolescent Health Policy; Eric G. Campbell, PhD, Mongan Institute for Health Policy, Massachusetts General Hospital.
      Other contributors. Sandra Applebaum, MS, led the fieldwork team from Harris Interactive and provided key assistance throughout this project. Yolanda Martins, PhD, and Kelly Burmeister, MS, from the Clinical Research Program at Children's Hospital Boston, made important statistical contributions.

      References

        • Brown S.D.
        • Lyerly A.D.
        • Little M.O.
        • Lantos J.D.
        Pediatrics-based fetal care: unanswered ethical questions.
        Acta Paediatr. 2008; 97: 1617-1619
        • American College of Obstetricians and Gynecologists/American Academy of Pediatrics
        ACOG committee opinion no. 501: maternal-fetal intervention and fetal care centers.
        Obstet Gynecol. 2011; 118: 405-410
        • Marteau T.
        • Drake H.
        • Bobrow M.
        Counseling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.
        J Med Genet. 1994; 31: 864-867
        • Norup M.
        Attitudes towards abortion among physicians working at obstetrical and pediatric departments in Denmark.
        Prenat Diagn. 1998; 18: 273-280
        • Bijma H.H.
        • Schoonderwaldt E.M.
        • van der Heide A.
        • Wildschut H.I.
        • van der Maas P.J.
        • Wladimiroff J.W.
        Ultrasound diagnosis of fetal anomalies: an analysis of perinatal management of 318 consecutive pregnancies in a multidisciplinary setting.
        Prenat Diagn. 2004; 24: 890-895
        • Carnevale A.
        • Lisker R.
        • Villa A.R.
        • Casanueva E.
        • Alonso E.
        Counseling following diagnosis of a fetal abnormality: comparison of different clinical specialists in Mexico.
        Am J Med Genet. 1997; 69: 23-28
        • Zahed L.
        • Nabulsi M.
        • Tamim H.
        Attitudes towards prenatal diagnosis and termination of pregnancy among health professionals in Lebanon.
        Prenat Diagn. 2002; 22: 880-886
        • de Silva D.C.
        • Jayawardana P.
        • Hapangama A.
        • et al.
        Attitudes toward prenatal diagnosis and termination of pregnancy for genetic disorders among healthcare workers in a selected setting in Sri Lanka.
        Prenat Diagn. 2008; 28: 715-721
        • Fetal Hope Foundation
        Foundation homepage.
        (Accessed Nov. 5, 2009)
        • North American Fetal Therapy Network
        NAFTNet homepage.
        (Accessed Nov. 5, 2009)
        • Comarow A.
        America’s best children’s hospitals.
        US News & World Report. 2009; 146: 114-154
        • Antonak R.F.
        • Livneh H.
        Measurement of attitudes towards persons with disabilities.
        Disabil Rehabil. 2000; 22: 211-224
        • Bell M.
        • Stoneman Z.
        Reactions to prenatal testing: reflection of religiosity and attitudes toward abortion and people with disabilities.
        Am J Ment Retard. 2000; 105: 1-13
        • Curlin F.A.
        • Lawrence R.E.
        • Chin M.H.
        • Lantos J.D.
        Religion, conscience, and controversial clinical practices.
        N Engl J Med. 2007; 356: 593-600
        • Drake H.
        • Reid M.
        • Marteau T.
        Attitudes towards termination for fetal abnormality: comparisons in three European countries.
        Clin Genet. 1996; 49: 134-140
        • Lo B.
        Resolving ethical dilemmas.
        4th ed. Lippincott Williams and Wilkens, Philadelphia2009
        • Lyerly A.D.
        • Cefalo R.C.
        • Socol M.
        • Fogarty L.
        • Sugarman J.
        Attitudes of maternal-fetal specialists concerning maternal-fetal surgery.
        Am J Obstet Gynecol. 2001; 185: 1052-1058
        • Ormond K.E.
        • Gill C.J.
        • Semik P.
        • Kirschner K.L.
        Attitudes of health care trainees about genetics and disability: issues of access, health care communication, and decision making.
        J Genet Couns. 2003; 12: 333-349
        • Rebagliato M.
        • Cuttini M.
        • Broggin L.
        • et al.
        Neonatal end-of-life decision making: physicians' attitudes and relationship with self-reported practices in 10 European countries.
        JAMA. 2000; 284: 2451-2459
        • Wertz D.C.
        • Fletcher J.C.
        • Mulvihill J.J.
        Medical geneticists confront ethical dilemmas: cross-cultural comparisons among 18 nations.
        Am J Hum Genet. 1990; 46: 1200-1213
        • Casper M.
        The making of the unborn patient: a social anatomy of fetal surgery.
        Rutgers University Press, New Brunswick (NJ)1998
        • Klein M.C.
        • Kaczorowski J.
        • Hall W.A.
        • et al.
        The attitudes of Canadian maternity care practitioners towards labor and birth: many differences but important similarities.
        J Obstet Gynaecol Can. 2009; 31: 827-840
        • Lenard G.
        Ethical problems in prenatal diagnosis: pediatric considerations.
        Brain Dev. 1995; 17: 44-47
        • Bijma H.H.
        • Wildschut H.I.
        • van der Heide A.
        • van der Maas P.J.
        • Wladimiroff J.W.
        Obstetricians' agreement on fetal prognosis after ultrasound diagnosis of fetal anomalies.
        Prenat Diagn. 2004; 24: 713-718
        • Kon A.A.
        • Ackerson L.
        • Lo B.
        How pediatricians counsel parents when no “best-choice” management exists: lessons to be learned from hypoplastic left heart syndrome.
        Arch Pediatr Adolesc Med. 2004; 158: 436-441
        • Brown S.D.
        • Truog R.D.
        • Johnson J.A.
        • Ecker J.L.
        Do differences in the AAP and ACOG positions on the ethics of maternal-fetal interventions reflect subtly divergent professional sensitivities to pregnant women and fetuses?.
        Pediatrics. 2006; 117: 1382-1387
        • Lasswell S.M.
        • Barfield W.D.
        • Rochat R.W.
        • Blackmon L.
        Perinatal regionalization for very low-birth-weight and very preterm infants: a meta-analysis.
        JAMA. 2010; 304: 992-1000
        • Kon A.A.
        Healthcare providers must offer palliative treatment to parents of neonates with hypoplastic left heart syndrome.
        Arch Pediatr Adolesc Med. 2008; 162: 844-848
        • Prsa M.
        • Holly C.D.
        • Carnevale F.A.
        • Justino H.
        • Rohlicek C.V.
        Attitudes and practices of cardiologists and surgeons who manage HLHS.
        Pediatrics. 2010; 125: e625-e630
        • Zeitlin J.
        • Di Lallo D.
        • Blondel B.
        • et al.
        Variability in caesarean section rates for very preterm births at 28-31 weeks of gestation in 10 European regions: results of the MOSAIC project.
        Eur J Obstet Gynecol Reprod Biol. 2010; 149: 147-152
        • NIH Consensus Development Conference Panel
        National Institutes of Health Consensus Development conference statement; vaginal birth after cesarean: new insights March 8-10, 2010.
        Obstet Gynecol. 2010; 115: 1279-1295
        • Stoll B.J.
        • Hansen N.I.
        • Bell E.F.
        • et al.
        Neonatal outcomes of extremely preterm infants from the NICHD neonatal research network.
        Pediatrics. 2010; 126: 443-456
        • Hanley G.E.
        • Janssen P.A.
        • Greyson D.
        Regional variation in the cesarean delivery and assisted vaginal delivery rates.
        Obstet Gynecol. 2010; 115: 1201-1208
        • Foureur M.
        • Ryan C.L.
        • Nicholl M.
        • Homer C.
        Inconsistent evidence: analysis of six national guidelines for vaginal birth after cesarean section.
        Birth. 2010; 37: 3-10
        • Wernovsky G.
        The paradigm shift toward surgical intervention for neonates with hypoplastic left heart syndrome.
        Arch Pediatr Adolesc Med. 2008; 162: 849-854
        • Janvier A.
        • Barrington K.
        • Deschenes M.
        • Couture E.
        • Nadeau S.
        • Lantos J.
        Relationship between site of training and residents' attitudes about neonatal resuscitation.
        Arch Pediatr Adolesc Med. 2008; 162: 532-537
        • Batton D.
        Resuscitation of extremely low gestational age infants: an advisory committee's dilemmas.
        Acta Paediatr. 2010; 99: 810-811
        • Batton D.G.
        Clinical report–antenatal counseling regarding resuscitation at an extremely low gestational age.
        Pediatrics. 2009; 124: 422-427
        • van den Berg M.
        • Timmermans D.R.
        • Kleinveld J.H.
        • et al.
        Are counselors' attitudes influencing pregnant women's attitudes and decisions on prenatal screening?.
        Prenat Diagn. 2007; 27: 518-524
        • Harris L.H.
        • Cooper A.
        • Rasinski K.A.
        • Curlin F.A.
        • Lyerly A.D.
        Obstetrician-gynecologists' objections to and willingness to help patients obtain an abortion.
        Obstet Gynecol. 2011; 118: 905-912
        • Dixon D.P.
        Informed consent or institutionalized eugenics?.
        Issues Law Med. 2008; 24: 3-59
        • Dresser R.
        Prenatal testing and disability: a truce in the culture wars?.
        Hastings Cent Rep. 2009; 39: 7-8
        • Parens E.
        • Asch A.
        Disability rights critique of prenatal genetic testing: reflections and recommendations.
        Ment Retard Dev Disabil Res Rev. 2003; 9: 40-47
        • Skotko B.G.
        With new prenatal testing, will babies with Down syndrome slowly disappear?.
        Arch Dis Child. 2009; 94: 823-826
        • Skotko B.G.
        Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers.
        Am J Obstet Gynecol. 2005; 192: 670-677
        • Bruner J.P.
        • Tulipan N.
        Tell the truth about spina bifida.
        Ultrasound Obstet Gynecol. 2004; 24: 595-596
        • Bliton M.J.
        Ethics: “life before birth” and moral complexity in maternal-fetal surgery for spina bifida.
        Clin Perinatol. 2003; 30 (v-vi): 449-464
        • Saigal S.
        • Stoskopf B.L.
        • Feeny D.
        • et al.
        Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents.
        JAMA. 1999; 281: 1991-1997
        • Marino B.S.
        • Tomlinson R.S.
        • Drotar D.
        • et al.
        Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease.
        Pediatrics. 2009; 123: e708-e715
        • Morrow A.M.
        • Quine S.
        • Loughlin E.V.
        • Craig J.C.
        Different priorities: a comparison of parents' and health professionals' perceptions of quality of life in quadriplegic cerebral palsy.
        Arch Dis Child. 2008; 93: 119-125
        • Boulet S.L.
        • Boyle C.A.
        • Schieve L.A.
        Health care use and health and functional impact of developmental disabilities among US children, 1997-2005.
        Arch Pediatr Adolesc Med. 2009; 163: 19-26
        • Schieve L.A.
        • Boulet S.L.
        • Boyle C.
        • Rasmussen S.A.
        • Schendel D.
        Health of children 3 to 17 years of age with Down syndrome in the 1997-2005 national health interview survey.
        Pediatrics. 2009; 123: e253-e260
        • Adzick N.S.
        • Thom E.A.
        • Spong C.Y.
        • et al.
        A randomized trial of prenatal versus postnatal repair of myelomeningocele.
        N Engl J Med. 2011; 364: 993-1004

      Linked Article

      • Letter to the Editor regarding: Brown SD, Ecker JL, Ward JRM, et al
        American Journal of Obstetrics & GynecologyVol. 208Issue 2
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          Brown and colleagues1 have done an important service for the perinatal medical community by documenting significant differences of approach to counseling pregnant women regarding the management of a pregnancy complicated by a fetal anomaly. These descriptive ethics data do not establish professional responsibility.2
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