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.” 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. 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. Hypothetical scenarios about intrauterine interventions were generalized from an MFM survey about 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. 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 χ ² 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.

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.

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 Tables 1 and 2 .

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 3

Clinical experiences and professional attitudes regarding fetal conditions

	Down syndrome			CDH			Spina bifida
Variable	FCP (%), n = 192	MFM (%), n = 242	P value	FCP (%), n = 192	MFM (%), n = 242	P value	FCP (%), n = 192	MFM (%), n = 242	P value
See patients pregnant with fetus with diagnosis in given year a-c
Yes	67	93		64	88		60	92
No	24	2	< .001	25	7	< .001	28	3	< .001
No answer	9	5		11	5		12	5
Mean no. of patients with fetus with diagnosis in typical year of practice (of those who see patients with diagnosis) b	9.61	11.49	.10	9.56	5.43	.001	7.46	6.59	.31
Patient outcomes (mean percentage of patients/y) a-c
Terminate pregnancy	21	51	< .001 d	17	28	< .001	29	42	< .001
Have intrauterine fetal treatment (other than termination)	1.14	.63	.511	11.77	11.43	.916	8.01	6.48	.458
Pediatric consult for pregnant women should take place. . . a
Prior to decision to terminate	76	54		82	80		82	77
Only if pregnancy continues	10	17		9	12		8	15
Only after delivery	4	6	< .001 d	1	0	.55	1	1	.13
No consult necessary	2	16		0	1		0	1
No answer	8	7		8	7		8	7
Importance of providing information for options for pregnancy termination at different stages of pregnancy a-c
More important (4-5 on 5-point scale)	70	90	< .001 d	69	88	< .001 d	70	88	< .001 d
Less important (≤3 on 5-point scale)	23	8		23	9		23	9
No answer	7	2		8	2		7	2
Support of patient decision to terminate pregnancy (in role as health professional) a-c
Support	35	52		36	49		35	54
Neutral	46	43	< .001	39	46	< .001	38	42	< .001
Oppose	10	2		12	3		12	3
No answer	9	3		13	2		14	2

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