What does the pre-transplant evaluation involve?
Initial work-up
It involves probably four to five pretty full, busy days of various testing – some of them blood work, a lot of them radiology, and most of them are talking to people and meeting the different members of the team to really get a comprehensive view of the kid, to know both whether we think they’re sick enough for transplant, but also to know whether there are any contraindications to transplant.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
Medical tests
If they’re inpatient, it’s usually a three to five day inpatient evaluation. They have an upper GI, they have a lower GI, they have chest X-Ray, they have an abdominal CTA*…if there’s a child who’s had multiple central lines*, they’ll have an ultrasound to see what veins are patent…they will meet with Nutrition, Social Work, Pharmacy, Hepatology, Gastroenterology, myself, Child Life specialists, they will all come in and evaluate them. And then most of the time they have pulmonary issues, so it’s Pulmonology, they usually have cardiac issues, so it’s Cardiology – I think that’s it. Every service in the hospital basically comes and sees them!
We’ll gather all of our information and then we sit down as a whole transplant team…then we come up with an outcome, to list or to defer.
Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs
Evaluating parents
[The evaluation] might be set up as all outpatient appointments or if the child is in the hospital it can be done as part of an admission. There are opportunities to ask what the tests are about, what the process of transplant is going to be like. I meet with the parents alone as part of the evaluation and our psychologist meets with the child alone. We discuss how they are managing the child’s illness, what emotional and practical support they might need to get to transplant, and also to give them a chance to ask their questions and get as much information as they want and need. I would also offer to connect them with other families who have been through transplant, and just generally find out what kinds of information and support they want as they think about moving towards transplant.
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program
Evaluating kids
We try to meet with everybody involved: the child and the parents, and sometimes other family members who are going to be involved in the process, especially for living donor evaluations. We try to meet separately, because we know there can be hard feelings and that sometimes kids don’t want to talk about them in front of their parents, they don’t want to put more stress or upset their parents, and vice versa.
Basically, we do a general history. We want to know about their background and just get to know them as people. We want to know about their medical background, what they’ve been through, whether this was a sudden event or a gradual illness over time, because sometimes that affects the way they’re coping with it. We’re looking to see how much they know about their illness: sometimes children know a lot, sometimes they don’t want to know a lot, sometimes the parents are afraid to tell them – so we see where they are in that process and how we can benefit them. We really try to assess what their coping styles are so we can help the team understand that particular patient and family. That way, we’ll know how to help them through this process: how much information they want; if they like to help with certain procedures, like IVs or blood draws; whether they would rather be distracted, told step-by-step what is going to happen, and so on. Then we look at adherence a lot. We know adherence is very important post-transplant because if they don’t take their medication, they could lose the organ. We look at the history of their behavior, whether they’ve struggled with adherence in the past and see how we can help overcome any barriers.
We also do a general social history of the family. Along with social work, we try to see how we can support the parents if they have financial difficulties, or their own emotional difficulties in going through this. What is the family structure, do they have supports in place? We talk about the child’s schooling, whether they’ve had to miss a lot of school in the past, whether they need special education services, how we can help if they do go through transplant so that they don’t fall too far behind in school and stay active with their friends.
We also ask a little bit about family medical history and family psychiatric history, because we know if there’s already a vulnerability, stress can bring these things out. Overall we try to be very preventative: not that this is going to preclude a patient or family from transplant, but we know that there could be an issue here, so what supports can we put into place now?
Melisa Oliva, PsyD, Transplant Psychologist
Why might someone be ineligible for transplant?
We would defer if we still feel that they haven’t advanced on their feeds, if they can still do some more advancement. If it’s a patient who’s from outside who comes in, we usually then will refer them to the CAIR clinic and say, “We don’t think that this child has yet failed enteral nutrition*. Let’s really try and push the enteral nutrition*.” There was another child who came in and was still eating a little bit by mouth, and their home hospital hadn’t yet tried doing a J-tube* or doing an ostomy* and trying to do feeds that way. Or there are some studies for sisapride* that they can get on which can actually help bowel motility in kids who have pseudo-obstruction, so we’ll refer them to that. So when we defer, it isn’t, like, “Defer, see you later.” It’s usually, “Why don’t you try A, B, C, and D, and then if A, B, C, and D fail, come back and then we’ll re-evaluate.”
Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs
If somebody had an overwhelming infection, cancer, some other medical reason that would just make it dangerous or prohibitive to do the transplant. I think the biggest ones would be some sort of an infection or malignancy. You also have to make sure that the family and the child can do what they need to do. It’s not an option to take your transplant or infection meds, so if the child has a history or the family has a history of non-compliance that’s worrisome, and we need to figure out a way to help them resolve that before they can move ahead.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
There’s a constellation of psychosocial issues that make people not ready for transplant: if they don’t have consistent caretakers, if they have parents or caretakers who really are not adherent and they can’t ensure that the kid is going to get adequate treatment – if they’re not filling prescriptions, they’re not coming to appointments, it’s difficult to reach them, they’re refusing care. We kind of insist that those families demonstrate for a period of a few months that they’re able to consistently get to appointments, fill their meds, get to counseling, and work toward this goal, because after transplant it’s not an option not to get your meds, it’s not an option not to come back to clinic.
We also might need to wait if, for example, the child is very, very scared and can’t even tolerate having blood tests. We’d need to work with them for a period of time in order to help desensitize that so they’d be able to cope with going through this.
Roberta Hoffman, MSW, Social Worker, Kidney Transplant Program
It’s a point of no return in a way, so if we feel that there’s some chance the child will recover, or the risk at this point in time for transplant is higher than the original disease risk, we say it’s not the right time. Like any transplant program, other contraindications are things like widespread malignancy or active infection, but typically we wouldn’t get the referral coming if there is an absolute contraindication.
If there is not an absolute contraindication, we usually bring the patient in and do our own assessment, because we also have top-notch cardiology service and we have the luxury of having so many specialized services.
Rima Fawaz, MD, Medical Director, Multivisceral Transplant Program