Date: March 17, 2017

Lecture title: Hydrocephalus Based Procedures in an Adult/Transition Spina Bifida Clinic: 5 year experience

Jeffrey Blount, MD, Birmingham, ALChief of Pediatric Neurosurgery, UAB

• Does not intend to discuss commercial products or services.

• Does not intend to discuss non-FDA approved uses of products/providers of services.

Hydrocephalus Based Procedures in an

Adult/Transition Spina Bifida Clinic:

5 year experience

Jeffrey Blount, Betsy Hopson, Kristen Riley, Patrick Pritchard, Mamerhi Okor and Brandon Rocque

Lifetime Care Model

Prenatal Neonatal Pediatric Clinic

Transition Clinic at

COA

Transition Clinic at Spain

Adult Clinic

UAB Maternal Fetal ClinicWomen’s and Infant Center (3rd Friday)-High risk- OB/GYN-Neurosurgery-Rehabilitation Medicine-Genetics-SB Coordinator

Children’s of AL NICU

Children’s of ALClinic 15 (2nd and 4th Wed.)-Urology-Neurosurgery-Rehabilitation Medicine-Orthopedics-SB Coordinator- Support staff (SW, orthotics, wound care)

- Shift to patient run visits-transition readiness - teaching and goal setting- Final Visit to COA at 20

-First Visit to Spain at 21-transition readiness teaching con’t- Increase frequency of visits temporarily to establish goals.

Spain Rehabilitation Clinic (1st and 3rd Wed.)-Urology-Neurosurgery-Rehabilitation Medicine-SB Coordinator- Support staff

Background• COA represents only multi-disciplinary SB

clinic in the state.• 565 pediatric patients currently.• Clinic is multi-disciplinary:

• Urology• Neurosurgery • Orthopedics• Rehabilitation Medicine• Support staff (orthotics, PT, SW, wound care, etc.)

Spina Bifida Programat Children’s of AlabamaUniversity of Alabama at Birmingham

UAB Women and Infant Children’s of Alabama UAB Spain RehabPrenatal Neonatal Care Adult Outpatient Neonatal Care Pediatric Care

Pediatric Clinic

Cohort• Currently following 204 patients in the Transition/Adult

Clinic.• 78 patients transitioned for COA.

• Gender• Adult Clinic

• 63% Female • 37% Male

• Peds Clinic• 53% Female • 46% Male

• Insurance• 75% Public• 25% Private

• Diagnosis • 83% Open MMC• 14% Closed defect

Cohort• 2010-2015: 204 adult SB (ASB) pts followed

• 61 ASB pts undergo 176 surgical procedures while followed in UAB-ASBC

• HCP Procedures= 51 ASB pts,(97 op encounters) and 161 procedures• Data prospectively collected: standardized questionnaire/MR

review• No control on entry/exit criteria for clinic or for decision making

related to operation• Purely observational cohort• Procedures:

• VPSR• VPS/VAS removal/EVD insertion• VPS, VAS placement• (ETV- n=1)

• Definitions (arbitrary):• Cluster (Cl)= >=3 VPSR/yr OR >4 VPSR/2 yrs• Complex (Cx) = >5 shunt revisions while under observation

Epidemiology and Variance

• 61 ASB pts undergo 176 NSG procedures while followed in UAB-ASBC

• HCP Procedures= 51 ASB pts,(97 op encounters) and 161 procedures

• ALL former open MMC; no occult dysraphism HCP• Incidence HCP procedure 51/204=.25• Clustered problems (>3VPSR/yr or >5 VPSR/2yrs)

• N=13/51 = 25.4% cohort; 13/204= 6.3% clinic cohort• Complex problems (>5 total VPSR/VASR procedures)

• N=10/51= 19.6% cohort; 10/204= 4.95% clinic cohort

Stratification/Cohort analysis

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Percent patients demonstrating complexity

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# pts in cohort by age

Analysis by age: % complex by age

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# pts in cohort by age

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Percent Procedures Complex by age

Complex course decreases with age

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Percent Shunt Events Complex CumVPSR-C TOTAL VPSR

GenderPed Clinic Adult Clinic Complex

shunt hxClustered shunt care

female .53 .63 .90 .92

P=.104 for gender/complexity

P=.033 for gender/clustered care

ConclusionsData:• Shunt needs continue but fall off with age (25%)

• 25% require some shunt intervention• 5-6% demonstrate complex or clustered care need• Females appear overly represented in complex/clustered cohort-

approaches but does not reach significance• Complex/clustered events drop off with age (Confounder: Older patient

sample size)

• Inflection point around 25-26 yrs (implication for retention for transition??)Observational:

• Detailed shunt history/baseline exam critical data for adult NSGs• Potential role for Ped NSG community/ smart phone aps etc.?

• Shunt issues eclipsed by other issues in determining happiness and fulfillment in ASB patient

Clinical Observations• Diminishing Hope• 56% self identify as permanently disabled unable to work,

seek work, or volunteer• Primary Concerns/Issues

• Bowel Management • Renal Function (stones, UTIs)• Wounds/Pressure Sores• Pain• Depression/Anxiety • Employment/Motivation• Risk to well being related to shunt

• Other Observations• Only seek healthcare emergently• Desire to give back• Desire to work is present but finding work is difficult