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Delivering the Diagnosis of Spina Bifida: Patient Outlook

Primary Researcher: Kristen E Ray

Kristen.ray1@uky.eduMentor: 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Payne, Director of SBAK, (Delivering the Diagnosis) reported in 2009 expectant mothers in the U.S. are receiving out-of-date, inaccurate information when receiving the diagnosis and prognosis.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

Expectant Mother Surveys

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)

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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%

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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?