NTD evaluation process

hugheye

We are up and running with our NTD/MMC repairs. I wanted to crowd surf and get an idea from all of you about how you do your initial evaluation process.

How quickly do you get patients in for evaluation?
How long does the complete evaluation process take?
What imaging do you do for your NTD referrals, and when during the evaluation does it occur?
Who consults these patient and when? (Do specific consults happen first and others after the first day? Do they consult individually or separately?)
Who supports these patients through their evaluation journey? (social work, psychologist, palliative care, chaplain, etc?)

TIA!!

krisrimbos

hugheye
Hi and sorry for the delay! I just sent you an email with responses for our center! Thanks!

MegJenks

Hi Eryn,

We currently only offer open NTD/MMC repair, but I am happy to share our process.

How quickly do you get patients in for evaluation? We try to get patients in by 23 weeks no matter timing of referral.
How long does the complete evaluation process take? For us it usually takes a couple days. We like them to have an MRI which is not always possible to get on the same day they come to clinic for an US and consult with MFM and pediatric subspecialists.
What imaging do you do for your NTD referrals, and when during the evaluation does it occur? This is kind of answered above. We always do US and then MRI as well. We like to get both prior to or even morning of clinic appt.
Who consults these patient and when? (Do specific consults happen first and others after the first day? Do they consult individually or separately?) MFM consults always and then we usually also have peds neurology, neurosurgery, neonatology, someone from our spina bifida clinic, and social work. They all see the patient the same day and most will consult separately but they all touch base so they are on the same page. If we offer repair, we have a large family meeting the night before that involves all the specialties at the same time with the family to go over everything together.
Who supports these patients through their evaluation journey? (social work, psychologist, palliative care, chaplain, etc?) We usually just have our social worker, but we do involve palliative care if needed.

Meg

AmyPowne

Here at UC Davis -

How quickly do you get patients in for evaluation? ASAP
How long does the complete evaluation process take? 2ish days
What imaging do you do for your NTD referrals, and when during the evaluation does it occur? MRI, US, fetal echo - we try to do all imaging and at least MFM on day one and subspecialists and "decision" meeting on Day 2 - if they are local, we do the MRI ASAP and of course the amnio ASAP with their referring provider
Who consults these patient and when? (Do specific consults happen first and others after the first day? Do they consult individually or separately?) - MFM is always first
We do similar consults to Meg above minus Peds Neurology but have our fetal surgeon consult as well, MFM usually goes back in with them
Who supports these patients through their evaluation journey? (social work, psychologist, palliative care, chaplain, etc?)
Social work
Happy to chat more if needed - abpowne@ucdavis.edu

Amy