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Delivering the Diagnosis of Spina Bifida: Patient Outlook
Primary Researcher: Kristen E Ray
[email protected]: Colleen Payne, SBAK Director (2011-2014)
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Table of Contents1. Introduction to Spina Bifida
2. Hypothesis
3. Relevance of Research
4. Methodology and Survey Results
5. Conclusion
6. Research Limitations
7. Research Implications
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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
Most Mild Most Severe
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Relevance for 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Payne, Director of SBAK, (Delivering the Diagnosis) reported in 2009 expectant mothers in the U.S. are receiving out-of-date, inaccurate information when receiving the diagnosis and prognosis.
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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.
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Date Created: Friday, August 28,2015
65Qualifying Responses
Complete Responses: 102
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
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)
How would you best characterize the way your doctor explained a high AFP result?
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)
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
9.23%
13.85%
15.38%
23.08%
40.00%
11
Pediatrician (at birth) (2)
Other (3)
Genetic Counselor (3)
Neurosurgeon (4)
Ultrasound Technician (5)
OBGYN (20)
Maternal Fetal Medicine doctor (MFM) (28)
0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%
3.08%
4.62%
4.62%
6.15%
7.69%
30.77%
43.08%
Healthcare Providers Who Gave Initial Diagnosis
Number of Expectant Mothers
Typ
e of
Hea
lthca
re P
rovi
der
Did you know anyone with Spina Bifida before you received the Diagnosis?
Yes (20)
No (45)
0% 10% 20% 30% 40% 50% 60% 70% 80%
30.77%
69.23%
Previous Knowledge of Spina Bifida Before Initial Diagnosis?
A tremendous amount (1)
Quite a bit (1)
A little bit (17)
Almost None (26)
None (20)
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
1.54%
1.54%
26.15%
40.00%
30.77%
Number of Expectant Mothers
Kno
wle
dge
Leve
l
Referrals
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)
0% 10% 20% 30% 40% 50% 60% 70% 80%
0.00%
69.23%
Expectant Mothers
Hea
lthca
re P
rovi
ders
In your opinion, what additional resources could have helped you through this difficult time?
5
4
3
2
1
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
12.70%
41.27%
50.79%
69.84%
84.13%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)
How do you think the health care provider presented information about SB? (referring to the first person to give you
the prognosis)
Did Not Speculate
Both Cases Equally
Best Case Scenario Only or Mostly
Worst Case Scenario Only or Mostly
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
20.00%
30.77%
10.77%
38.46%
% of Expectant Mothers’
Qua
lity
of In
form
atio
n G
iven
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?
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
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)?
Not at all confident
Somewhat confident
Very confident
0% 10% 20% 30% 40% 50% 60%
43.08%
43.08%
13.85%
49.23%
36.92%
13.85%
Percent of Expectant or New Mothers
Con
fiden
ce L
evel
KEYPrognosis Diagnosis
Very Confident (9)
Very Confident (9)
Somewhat confident (24)
Somewhat confident (28)
Not at all confident (32)
Not at all confident (28)
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)?
Not confident at all (20)
Not very confident (13)
Somewhat confident (20)
Confident (8)
Very confident (4)
0% 5% 10% 15% 20% 25% 30% 35%
31%
20%
31%
12%
6%
Percent of Expectant or New Mothers
Con
fiden
ce L
evel
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)
How was the initial diagnosis given to you?
Other (please speify) (12)
Online through online health records (1)
Received results in the mail (0)
At the next office visit (7)
0% 2% 4% 6% 8% 10%12%14%16%18%20%
18.46%
1.54%
0.00%
10.77%
Percent of Expectant or New Mothers
Pre
sent
atio
n of
Initi
al D
iagn
osis
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.)
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)
0% 5% 10% 15% 20% 25% 30% 35%
16.92%
29.23%
21.54%
32.31%
What other information did you take into account when making your decision about
options?
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 specialist(s) (36)
My own research (51)
0% 20% 40% 60% 80% 100%
4.62%
7.69%
23.08%
24.62%
38.46%
50.77%
55.38%
78.46%
Percent of Expectant Mothers
Fact
ors
affe
ctin
g de
cisi
on
What decision did you ultimately decide?
Adoption (0)
Termination (1)
Have not decided yet (2)
Fetal Surgery (24)
Postnatal surgery (38)
0% 10% 20% 30% 40% 50% 60% 70%
0.00%
1.54%
3.08%
36.92%
58.46%
Percent of Expectant and New Mothers
Dec
isio
n
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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.
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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
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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
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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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QUESTIONS?
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