Overcoming Social Attitudes as a Barrier to Early Identi

Overcoming social attitudes as a barrier to early identification of fetal alcohol spectrum disorders (FASDs)

Form Approved

OMB No.xxxx-xxxx

Exp. Date xx/xx/xxxx

AMERICAN ACADEMY OF PEDIATRICS

PRE-TRAINING EVALUATION SURVEY

Thank you for your interest in fetal alcohol spectrum disorders (FASD). We would like to invite you to complete a pre-training evaluation survey. We appreciate your willingness to help us evaluate the effectiveness of the training and its impact on your practice as you address the prevention, identification, and treatment of FASD.

This survey will take approximately 10 minutes to complete. Your responses will be kept secure and no individually identifying information will be included. Risks to participating in this survey are minimal and include the risk of your information becoming known to individuals outside the AAP. This project is being conducted with support from the Centers for Disease Control and Prevention (CoAg# OT18-1802). We plan to share findings with CDC in de-identified, aggregate form.

Your participation in this survey is voluntary. You may decline to answer any question and you have the right to stop the survey at any time.

Please submit questions to the project partners at [email protected].

UNIQUE IDENTIFIER INFORMATION (to help us match your pre- and post-training responses)

Today’s date: ___ ___ /___ ___/ ___ ___ ___ ___

1. First 2 letters of your mother’s maiden name ___ ___

2. Month of your birthday ___ ___

3. Last 2 digits of your social security number ___ ___

4. State in which you practice ___ ___

The public reporting burden of this collection of information is estimated to average 10 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to - CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333 ATTN: PRA (xxxx-xxxx)

KNOWLEDGE QUESTIONS

5. Which of the following statements accurately describe alcohol use among pregnant women aged 18–44 years? (Check all correct statements):

• A. About 1 in 9 pregnant women reported drinking alcohol in the past 30 days.

• B. Some light alcohol consumption is reported, but binge drinking is rare among pregnant women who report consuming alcohol.

• C. About one third of pregnant women who reported consuming alcohol engaged in binge drinking.

• D. Pregnant women who reported binge drinking in the past 30 days reported an average of 2.5 binge-drinking episodes during that same time period.

• E. Pregnant women who reported binge drinking in the past 30 days reported an average of 4.5 binge-drinking episodes during that same time period.

6. Which of the following statements is a rationale for making a diagnosis of an FASD? A diagnosis of FAS/an FASD will: (select all that apply)

• A. Help facilitate understanding of the child’s strengths and challenges as it relates to neurobehavioral functioning.

• B. Helps provide the framework for the parents and teachers to provide the environment necessary for the child to succeed.

• C. Help provide the developmental and educational interventions that could lead to better outcomes.

• D. Help children and families avoid bias.

• E. Help differentiate between an FASD and other causes of developmental delays, which may warrant different learning/treatment approaches.

7. When surveyed about their alcohol use ____ of mothers with children diagnosed with FAS/an FASD have reported that their physicians did not warn them of the dangers of consuming alcohol during their pregnancy:

• A. < 5%

• B. Between 6% -10%

• C. Between 11% - 15%

• D. > 20%

• E. None of these percentages reflect mothers’ reports

8. A child with no physical stigmata of FAS has evidence of structural brain abnormalities and functional neurocognitive disabilities, which manifest as problems with behavior, adaptive skills, and self-regulation. Which of the following is not an appropriate plan of action? (Check all that apply)

• A. Collect a comprehensive history of prenatal exposures, including tobacco, alcohol, illicit drugs or other medications.

• B. Evaluate for possible genetic and environmental etiologies.

• C. Consider an FASD diagnosis such as ND-PAE in your differential diagnosis.

• D. Provide anticipatory guidance to parents/caregivers while reassuring them that since the child has no facial features of fetal alcohol syndrome, the child’s problems must be related to another disorder.

• E. Educate the parent about impairments seen in children with FASD so they can better understand and respond to their child’s behavioral challenges.

9. Which of the following should be done when a child in your practice is identified as having developmental/behavioral problems in the context of prenatal alcohol exposure? Select all that apply.

• A. Refer the child to EI services (in a child below the age of 3 years) for evaluation/therapy.

• B. Refer the child to the school for educational evaluation (in a child above the age of 3 years).

• C. Refer the child to a developmental-behavioral pediatrician, geneticist, or neurologist knowledgeable in FASDs.

• D. Refer to an FASD clinic, if there is one in your area.

• E. Do nothing unless the child can be diagnosed with FAS because pediatricians are not qualified to make a diagnosis of FASDs.

OPINION QUESTIONS

10. On a scale from 1 to 5 where 1 means you strongly disagree with the statement and 5 means that you strongly agree, to what extend do you disagree or agree with the following statements. (Select one number per row.)

	Strongly disagree	Disagree	Neutral	Agree	Strongly agree
It is important to screen all patients/parents for alcohol use.	1	2	3	4	5
It is important to screen all pregnant women for alcohol use.	1	2	3	4	5
It is important to screen all women of reproductive age for alcohol use.	1	2	3	4	5
It is important to educate women of reproductive age, including those who are pregnant, about the effects of alcohol on a developing fetus.	1	2	3	4	5
It is important to inquire about and document potential prenatal exposure for all patients.	1	2	3	4	5

11. To what extent do you agree with the following statements about alcohol consumption during pregnancy? (Mark one response per row.)

	Strongly disagree	Disagree	Neither Agree nor Disagree	Agree	Strongly Agree
Is more prevalent in women with higher incomes.	1	2	3	4	5
Is more prevalent in women with higher levels of education.	1	2	3	4	5
Does not vary between ethnic or racial groups.	1	2	3	4	5

12. The following questions are regarding biological mothers of children with Fetal Alcohol Spectrum Disorders (FASDs). Please indicate your answer to each item on the corresponding 9-point scale.

	Very								Not at all
How similar do you think a women who consumes alcohol while pregnant is compared to everyone else in the general population?	1	2	3	4	5	6	7	8	9
How like do you think a woman who consumes alcohol while pregnant is compared to everyone else in the general population?	1	2	3	4	5	6	7	8	9
How comparable do you think a woman who consumes alcohol while pregnant is compared to everyone else in the general population?	1	2	3	4	5	6	7	8	9
How good do you think a biological mother of children with FASD is compared to everyone else in the general population?	1	2	3	4	5	6	7	8	9
How respected do you think a biological mother of children with FASD is compared to everyone else in the general population?	1	2	3	4	5	6	7	8	9
How favorable do you think a biological mother of children with FASD is compared to everyone else in the general population?	1	2	3	4	5	6	7	8	9
How responsible do you think a biological mother of children with FASD is for her child’s condition?	1	2	3	4	5	6	7	8	9
How blamed do you think is a biological mother of children with FASD for her child’s condition?	1	2	3	4	5	6	7	8	9

13. How much did a biological mother of children with FASD cause her child’s condition?

Did not cause								Did cause
1	2	3	4	5	6	7	8	9

PRACTICE QUESTIONS

14. During the past six-months, did you recognize possible fetal alcohol spectrum disorders (FASD) in any of your patients?

Yes | No

15. During the past six months, did you diagnose any children with fetal alcohol syndrome (FAS) or one of the fetal alcohol spectrum disorders (FASDs)?

Yes | No

16. During the past six months, did you refer any children for FASD assessment?

Yes | No

If “yes,” to whom did you refer the family/child?

17. Are you familiar with FASD-related resources/services in your healthcare system?

Yes | No

18. Is stigma a barrier as you consider assessing for prenatal alcohol exposure in your clinical practice?

Yes | No

If any of the following items do not apply to you in your current position, please circle “N/A” for each item that is not applicable.

19. How often do you do the following (mark one number per row)

	N/A	Never	Rarely	Sometimes	Usually	Always
Inquire about prenatal exposure to alcohol.	0	1	2	3	4	5
Identify a patient as someone who may have one of the FASDs.	0	1	2	3	4	5
Diagnose a patient as someone who may have one of the FASDs.	0	1	2	3	4	5
Refer a patient for diagnosis and/or treatment services for an FASD.	0	1	2	3	4	5

GENERAL

20. Please feel free to comment on your response to any of the questions in this survey.

Please take a moment to tell us about yourself:

How would you describe your gender identity? :  Male  Female Are you Hispanic or Latino/a?  No  Yes (includes: Mexican, Mexican American, Chicano, Puerto Rican, Cuban, or other Hispanic or Latino/a) With what racial or cultural group(s) do you identify yourself? (Mark all that apply)  Black/African American  Asian  Native Hawaiian or other Pacific Islander  American Indian or Alaska Native  White  Other (specify):______________

What year did you complete or will you complete your training: _______________ Are you, or will you be, a:  Primary Care Pediatrician  Developmental/Behavioral Pediatrician  Geneticist  Other Pediatric Sub-specialty Specify: _____________________________________  Family Physician  Other (specify): _______________________________ Please indicate your primary employment site setting, that is, the setting where you spend most of your time. Mark only ONE response.  Self-employed solo practice  Two physician practice  Pediatric group practice, 3-10 pediatricians  Pediatric group practice, >10 pediatricians  Multispecialty group practice  Health maintenance organization (staff model)  Medical school or parent university  Non-profit community health center  Non-government hospital or clinic  City/county/state government hospital or clinic  US government hospital or clinic  Other: Please describe the community in which your primary practice/position is located?  Urban, inner city  Urban, not inner city  Suburban  Rural

Thank you for taking the time to answer these questions!

8