Healthcare providers are still not adequately informing expectant mothers about spina bifida when delivering the initial diagnosis. A survey of 65 expectant or new mothers found that providers often overestimate the severity of prognosis and do not provide sufficient information or referrals to support organizations. As a result, mothers feel unprepared to explain the diagnosis or make treatment decisions. They rely heavily on their own research and connecting with support groups. The study implications are that healthcare provider education and legislation could help ensure mothers receive up-to-date, accurate information to make fully informed choices.

1. Powered by
Delivering the Diagnosis of Spina
Bifida: Patient Outlook
Primary Researcher: Kristen E Ray
Kristen.ray1@uky.edu
Mentor: Colleen Payne, SBAK Director (2011-2014)

2. Table of Contents
1. Introduction to Spina Bifida
2. Hypothesis
3. Relevance of Research
4. Methodology and Survey Results
5. Conclusion
6. Research Limitations
7. Research Implications
2

3. What is Spina Bifida?
● Portion of spinal cord and meninges exposed into a fluid sac.
● 3 different forms of Spina Bifida, causing levels of severity
3
Most Mild Most Severe

4. Relevancefor Research
● NEW!- KY legislation – Senate Bill 159- information from medical providers written and
reviewed by experts.
- Experts: http://spinabifidaassociation.org/about-sba/advisory-council/
● Many doctors, specifically OBGYN’s, overestimate the risk accompanying babies born
with Spina Bifida, as do Maternal Fetal Medicine doctors (MFM’s).
● Catherine Shaer M.D. (MOMS study) in 2007 reported out of 486 questionnaires, most
doctors overestimated severity of Spina Bifida prognosis.
- ONLY 2% felt confident in giving prognosis!
- 19% still continue to manage pregnancies on their own!
- Remainder give referrals
● Colleen Payne, Director of SBAK, (Delivering the Diagnosis) reported in 2009 expectant
mothers in the U.S. are receiving out-of-date, inaccurate information when receiving the
diagnosis and prognosis.
4

5. Hypothesis
● By analyzing the quality of delivering
the diagnosis of Spina Bifida to expectant
and new mothers within the past year,
we can determine if healthcare providers
are supplying up-to-date, accurate
information to these parents to help
them make a more informed decision for
treatment.
5

6. Powered by
Date Created: Friday, August 28,2015
65
Qualifying Responses
Complete Responses: 102
Expectant Mother Surveys

7. 4.62%
16.92%
27.69%29.23%
21.54%
Target Population Breakdown
Within the last month (3)
1-3 months (11)
4-6 months (18)
7-9 months (19)
10-12 months (14)

8. 8
Respondents’ Locations

9. 36.92%
26.15%
6.15%
30.77%
Elevated AFP Test Result
Yes (24)
No (17)
Don't Remember (4)
I did not take the AFP test (20)
9

10. How would you best characterize the way your
doctor explained a high AFP result?
9%
13.85%
15.38%
23.08%
40%
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
It's likely a false positive (6)
No explanation (9)
Other (please specify) (10)
It's very likely your baby has a neural tube
defect (NTD) (15)
Not applicable (diagnosis at birth or you
received a low level AFP test result) (26)

11. 11
3.08%
4.62%
4.62%
6.15%
7.69%
30.77%
43.08%
0% 10% 20% 30% 40% 50%
Pediatrician (at birth) (2)
Other (3)
Genetic Counselor (3)
Neurosurgeon (4)
Ultrasound Technician (5)
OBGYN (20)
Maternal Fetal Medicine doctor (MFM)
(28)
Number of Expectant Mothers
TypeofHealthcareProvider
Healthcare Providers Who Gave Initial
Diagnosis

12. Did you know anyone with Spina Bifida before you
received the Diagnosis?
30.77%
69.23%
0% 10% 20% 30% 40% 50% 60% 70% 80%
Yes
(20)
No
(45)

13. Previous Knowledge of Spina Bifida
Before Initial Diagnosis?
1.54%
1.54%
26.15%
40%
30.77%
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
A tremendous amount (1)
Quite a bit (1)
A little bit (17)
Almost None (26)
None (20)
Number of Expectant Mothers
KnowledgeLevel

14. Referrals
0
69.23%
0% 10% 20% 30% 40% 50% 60% 70% 80%
No referrals (0)
Other (6)
Women's Clinic for termination (9)
Spina Bifida Clinic (20)
Fetal Care Center (27)
Genetic Counselor (35)
Maternal Fetal Medicine doctor (42)
Neurosurgeon (45)
Expectant Mothers
HealthcareProviders

15. In your opinion, what additional resources could have
helped you through this difficult time?
12.70%
41.27%
50.79%
69.84%
84.13%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
5
4
3
2
1
KEY
1. Connection with
experienced parents
(53)
2. Contact information to a
Spina Bifida support
organization (44)
3. Written information
about Spina Bifida (32)
4. Spina Bifida education
seminars (26)
5. Other (8)

16. How do you think the health care provider presented
information about SB? (referring to the first person to give you
the prognosis)
20.00%
30.77%
10.77%
38.46%
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
Did Not Speculate
Both Cases Equally
Best Case Scenario Only or Mostly
Worst Case Scenario Only or Mostly
% of Expectant Mothers’
QualityofInformationGiven

17. When you were given the initial Spina Bifida diagnosis
(referring to the FIRST person to give you the diagnosis), on
which options were you counseled/given, and in what order?

18. Which, if any, resources were shared with you during your
pregnancy by your health care provider (first person that gave
you the diagnosis)? (May choose more than one)
Answer Choices Responses Respondents
None 44.62% 29
Pertinent websites to visit 26.15% 17
Written up-to-date information on SB 20% 13
SB brochure 18.46% 12
Contact information/web address for the National Spina Bifida
Association (SBA)
13.85% 9
Other (please specify) 13.85% 9
Contact information/web address for your local Spina Bifida support
Organization
10.77% 7
In depth, information on SB (booklet) 7.69% 5
Contact information for parent having child/adult with SB 3.08% 2
Total Respondents: 65

19. How confident did you feel in your ability to explain the
Diagnosis and Prognosis to family members, friends, and
other close ones after the initial diagnosis (after the first
person gave you the diagnosis)?
43.08%
43.08%
13.85%
49.23%
36.92%
13.85%
0% 20% 40% 60%
Not at all confident
Somewhat confident
Very confident
Percent of Expectant or New Mothers
ConfidenceLevel
KEY
Prognosis Diagnosis
Very Confident
(9)
Very Confident
(9)
Somewhat confident
(24)
Somewhat confident
(28)
Not at all confident
(32)
Not at all confident
(28)

20. How confident did you feel in your ability to
raise a child with Spina Bifida after your initial
diagnosis (after the first person gave you the
diagnosis)?
30.77%
20%
30.77%
12.31%
6.15%
0% 10% 20% 30% 40%
Not confident at all (20)
Not very confident (13)
Somewhat confident (20)
Confident (8)
Very confident (4)
Percent of Expectant or New Mothers
ConfidenceLevel

21. At the time of the initial diagnosis, how
knowledgeable did you perceive your
healthcare provider to be about SB?
7.69%
23.08%
33.85%
26.15%
9.23%
I didn't question their
knowledge level (5)
Not at all
knowledgeable (15)
Somewhat
knowledgeable (22)
Very knowledgeable
(17)
Expert (6)

22. How was the initial diagnosis given to you?
18.46%
1.54%
0.00%
10.77%
0% 5% 10% 15% 20%
Other (please speify) (12)
Online through online health records (1)
Received results in the mail (0)
At the next office visit (7)
Percent of Expectant or New Mothers
PresentationofInitialDiagnosis

23. How much did you rely on your healthcare provider
for information about Spina Bifida to help you make
treatment decisions (postnatal surgery, fetal
surgery, etc.)
16.92%
29.23%
21.54%
32.31%
0% 10% 20% 30% 40%
I didn't rely on my provider at all to help me
make treatment decisions (11)
I relied very little on my provider to help me
make treatment decisions (19)
I relied somewhat on my provider to help me
make treatment decisions (14)
I relied a lot on my provider to help me make
treatment decisions (21)

24. What other information did you take into
account when making your decision about
options?
4.62%
7.69%
23.08%
24.62%
38.46%
50.77%
55.38%
78.46%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Not applicable (diagnosis at birth) (3)
Other (please specifiy) (5)
First Healthcare professionals advice (first
person to give the diagnosis) (15)
Friends' and family member's advice (16)
Religious beliefs (25)
Online message boards and groups (33)
The advice of multiple healthcare
professionals including Spina Bifida…
My own research (51)
Percent of Expectant Mothers
Factorsaffectingdecision

25. What decision did you ultimately decide?
0%
1.54%
3.08%
36.92%
58.46%
0% 10% 20% 30% 40% 50% 60% 70%
Adoption (0)
Termination (1)
Have not decided yet (2)
Fetal Surgery (24)
Postnatal surgery (38)
Percent of Expectant and New Mothers
Decision

26. Conclusion
● Results have not changed since the 2009 “Delivering the Diagnosis”
survey by Colleen Payne or since the 2007 “MOMS” study done by
Catherine Shaer.
● Healthcare providers are not providing the information patients need
in order to make informed decisions about treatment.
● Mothers are seeking connections with support groups.
● Ky legislation law should provide a better knowledge base for
providers to give higher quality diagnosis and prognosis to expectant
and new mothers.
26

27. Limitations
● Accessing OBGYN’s or MFM’s
● Lack of participation in survey
● Lack credibility
● Expectant parents’ memory and experience of what happened
● Relied only on social media for respondents
27

28. Implications
● Reduce stress amongst mother’s post Spina Bifida Diagnosis
● OBGYN educated by SBA and SB specialist (neurosurgeon and fetal care center)
● Reduce public misconception
● Beyond the scope of our small target population, worldwide possibility
● Replicate study in a few years and include worldwide populations or specific ethnic group
● Legislation nationwide, worldwide
● Symposium held for diagnosing disabilities offered to doctors
28

29. Acknowledgements
Colleen Payne, SBAK Executive Director
Dr. Bruce Webb
The University of Kentucky ABT program and its faculty and staff
My Family
Tyler Ramey, Andrea Edin, Beth Centner, Rebecca Norcross and Kelly Stansbury
Each of you here today
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30. 30
QUESTIONS?