The document discusses a study on how healthcare providers deliver diagnoses of spina bifida to expectant mothers. It finds that providers often overestimate the severity of spina bifida and do not provide accurate or up-to-date information to help mothers make informed decisions. The study surveyed over 65 mothers who received a spina bifida diagnosis. It found that mothers received little support or guidance from providers and had to conduct their own research. The study aims to improve how diagnoses are delivered so mothers can better understand their options and make treatment decisions.
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Spina Bifida Association of Kentucky research presentation- Kristen Ray
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mothers in the U.S. are receiving out-of-date, inaccurate information when receiving the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
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
29
Name. Thank you for coming to learn about my research as an agricultural biotechnologist. My work consisted of determining the quality of Delivering the Diagnosis of Spina Bifida from several Patient’s Outlook.
We will first discuss… 1. An Intro to SB, I will give some minor background information about SB. However bc we only have 12 minutes, I wont too detailed. If you have further questions about SB, you can ask me at the end of the presentation or you can always contact me by e-mail, which is listed on the 1st pg of this presentation. 2. I will then disclose my hypothesis. 3. Followed by… explaining the relevance of my research. Subsequently, I will briefly discuss the meth. and results 4.And finally, I will reveal my conclusions and back up my hypothesis followed by limitations and implications for this research.
So What is Spina Bifida. The nervous system forms apprx. within the 1st 2 wks of pregnancy. Resarch shows lack of appropriate levels of folic acid can lead to underdeveloped neural tissue. When SB occurs, either a vertebra in the vertebral column is missing or in more severe cases the neural tissue doesn’t completely close up around the spinal cord causing a portion of spinal cord and men. to protrude into a fluid-filled sac.. If sac forms, this most likely causes some level of paralysis in lower extremities of the body often accompanied with minor lower back pain and scoliosis. 3 diff. forms. This study only focuses on the 2 forms of SB that can be detected before birth by various testing, called Meningocele and Mylomeningocele. Occulta (most mild form of SB) isn’t diagnosed before birth. There is a few routine surgery options to chose from in order for these babies to still live healthy lifestyles and are preformed before or after birth to close this opening in the spine, which u will see later in presentation.
We will discuss the 1st bullet in more detail later, but it is important to mention here for relevance purposes. There is a new law in effect as of March 24th, 2015. On this date, Senate Bill 159 became the first law of its kind in the nation, ensuring expectant parents across Kentucky will receive current, evidence-based information from medical providers reviewed by experts. These experts are the Spina Bifida Associations Professional advisory council consisting of specialists, such as neurosurgeons, urologists, developmental pediatrician, neuropsychologist to name a few. I have listed the website for your convenience if you would like to know more information about the advisory council.
I decided to focus my research project on surveying expectant and new mothers of babies with SB whom received the diagnosis and prognosis within the past year to determine the quality of information these mothers were receiving from healthcare providers giving the diagnosis. This is important bc research shows first bullet.
This statement is supported by research preformed by Shaer and Payne… Shaer’s research in 2007 involved surveying 486 doctors whom were giving SB prognosises. She assessed their knowledge about SB & the results showed only 2% confident. 19%, remainder referrals. Concluding doctors specifically OBGYN’s and MFM’s aren’t making the efforts to learn the information needed b4 giving the prognosis to parents.
My research project mimiked the previous study done by Colleen Payne called Delivering the Diagnosis. She reported in 2009 that exp. Mothers… hindering these parents to make informed treatment decisions.
I wanted to know if the results she found had changed at all within the past 5 years.
1.
2.
Make sure to say this survey was only for the US.
Since you receive the initial diagnosis between 16 weeks thru birth its safe to say Approximately 78% of respondents received their diagnosis 7 or more months ago. So we can say their babies are here now. Less than 25% haven’t met their babies yet. Good for us bc u can better access whether your healthcare provider was accurate or not.
Our research was only conducted for recipients in the US, however we did get some responses for other places like Port of Spain. This slide shows the places we received the 65 valid responses from expectant and new mothers according to each recipients IP address received upon submitting the survey to Surveymonkey.
Alpha fetal proteins is a a protein produced by a fetus, present in amniotic fluid & bloodstream of the mother. Levels of the protein can be measured to detect certain congenital defects such as spina bifida and Down syndrome. Usually, the first tip of sb. Gives odds of ntd., not when given official diagnosis. Mothers r usually sent for extra testing if afp level is elevated. 26% said they had a normal afp test, so they were blind sided at birth.
We tried to word this as clearly as possibly but ppl didn’t answer in a relevant way bc they didn’t seem to understand the question. Tell about other examples, like some didn’t understand the question bc of the comments made. For example, … and put %
Process: Most ppl go to OBGYN for ultrasound. Whats happened is the OBGYN saw something strange and majority of OBGYNs referred to MFM for official diagnosis. So this is what we hoped for and expected. Do pie chart instead for percentages.
This is what we expected.
The day of the initial diagnosis parents are relying on the docs information completely. Majority of mothers said they had no prior knowledge of SB b4 intitial diagnosis. Therefore, The first info they get about sb may be from that doc giving info. It is thus very important to make sure doctors are giving accurate, up-to-date information to these mothers. However, remember from Shaer study, these doctor were not confident in giving prognosis. Majority of these healthcare providers also don’t specialize in sb and mothers are using this information to make treatment decisions!
Mention can pick multiple answers. Add % as far as like 65% were referred to neurosurgeon. Good that’s happening but still need to see more than that, that should be the main referral. Parents are seeking info and neuro is the other accurate provider to give you accurate info and its very comforting to patients and make ethical informed deicions. Others: perinatologist, midwife.
Majority answers say parents are craving the need to set up networks, and SB chapters are a great resource to connect pts. so SBA can solve this issue easily . Delete one or the other after editing ppt. Mention could pick more than one answer here. 1 and 2 go hand and hand. Mention a few on the others option: Should be shown positive photos of happy kids and adults with SB, Support group, a consult with the neurosurgeon, Better resources and referrals early on, counselor, fetal surgery information. Two respondents did skip this answer, we didn’t set this question as required.
Key question! I want to zip thru these results, u can look at them in front of you more in detail, but I want to stress the importance of this slide. Notice 38% of respondents received worst case scenario and Remember… the vast majority of these expectant mothers have no prior knowledge of SB. So they have nothing to base that info on, nothing to counter that info with. As far as these mothers know, this is the only way their future child will be!
Almost one third of respondents answered the first treatment option their healthcare provider- term. Was first thing doc said. Mention Option not presented and 1st option column. Bring up a few facts. Doctors also aren’t thinking about SB bc 73% respond that this option wasn’t even presented but they are thinking about termination; So these healthcare providers have other options that they aren’t presenting.
The most answered choice is None!
Only 20% of respondents received written up-to-date info on SB. Hopefully, Senate Bill 159 will change this number since it has now gone into effect; so we should see an increase in this along with Contact and web address info for the National SBA and Ky’s local chapter, however, remember this bill is only in effect in KY. Expectant mothers not living in KY will still lack this information upon initial diagnosis.
Again, almost half of these expectant mothers at the time of the initial diagnosis aren’t receiving the information they need to be competent in explainging Spina Bifida; specifically the prognosis.
This is pretty much hat we expected to see. Mothers aren’t confident because there doctors aren’t confident in giving diagnosis and therefore aren’t giving out the information needed.
This is what we expected to see. 69% assumed the person giving diagnosis had a lot of knowledge or just didn’t think to question them. Majority of these mothers have no prior knowledge so they assumed the information they were receiving from the doc is correct.
Not significant. What we expected. Check response for online answer get with colleen if weird. Specify other answers, have all on note card in case they ask.
We asked how much the expectant mothers relied on their health provide for information about SB to help them make their treatment options. Therefore, again, its very important to make sure these doctors have up-to-date, accurate info. Results are what we found and expected.
Answer: My own research- vague (we assume googled it) this is prob. the worst thing u can do bc what you find on google. You find worst case scenario or unreliable information and took into account when making their decision. Great that half got online message boards goes back to mothers seeking connections and more information.
Also, reference other options: neurosurgeon's prognosis, I haven’t met with the team of doctors to decide yet, health insurance coverage was a huge factor, Geneticist and MFM asked if we were keeping pregnancy.
Pleased to see we did receive one response from a mother who Terminated. I know there are many mothers out there not receiving this accurate info. And even though I wasn’t able to reach many who have terminated, the fact that this mother is searching for more information leads me to believe she didn’t receive the information she needed at the initial diagnosis.
Think on this more, maybe I can come up with better ones!