When do you teach families about medication?
We meet with families initially when they are just being evaluated for a transplant. We want them to begin learning very early about the importance of taking transplant medications correctly. We even talk with them about finding ways to better manage the medications they might already be taking.
We meet with the families again when the patient has been admitted for the transplant surgery. For some of our families, medications might be overwhelming, so we teach about a few medications each day over a course of five or six days, and then revisit the medications again before they go home. For other families, they can learn everything they need to know in one or two teaching sessions. It all depends on the comfort level that the families display and what information they can relay back to you indicating how well they know and understand the medications.
We are also available in transplant clinics to continue to do teaching with them after they have gone home. Sometimes families want additional teaching, even years after the transplant has happened. We want to be available to teach parents and their kids anytime they have questions about their medications.
Jennifer Gilarde, PharmD
Who do you teach about medication? What do you teach them?
The involvement of the kids themselves depends on their age and their personal preference. If they’re adolescents, we really encourage them to become active participants in learning about their medications. Teenagers are eventually going to leave home, so they need to learn to manage their medications at some point. I also have a couple nine and ten year olds who are really actively involved in learning about and knowing about their medications, so it just depends on the level of involvement from the patients themselves. But primarily we target the family members, the parents or whoever the primary caregivers are going to be.
We teach families the names, the doses, the side effects, and everything else that they need to know about their medications. We review where medications should be stored, other medicines that they could potentially take or should not take, and foods that they should avoid that could interact with their transplant medications. We also talk about how to call the pharmacy to get their medications refilled, and what to do if they are having problems taking their medications like they should. And we want them to be able to teach us back a lot of that information to demonstrate how well they understand everything they have been taught.
Jennifer Gilarde, PharmD
How do you know someone is getting the right amount of medication?
For some of these medications, we actually measure the amount of medicine inside their body by doing blood tests, and then we make adjustments to their medication doses based on this measurement. We always want our patients to have just the right about of medication in their body, which is why it is so important we check labs on a regular basis and why we often have to make changes to their doses. We always ask patients or their family members to tell us the number of pills they are taking, to confirm they are getting the right amount. For kids taking liquid, we always verify with the family how much medication they are measuring in the syringes.
Jennifer Gilarde, PharmD
Why is medication compliance so important for transplant?
Medication adherence is critical with transplant. Patients need to take medication for the rest of their life, and often if they don’t take their medication, then their organs will reject, and there are situations where they’ll die. So we don’t want someone to be put in that situation. Organs are very difficult to find, there’s a limited source of organs, so if someone’s not taking their medicine and they’re not going to treat that organ right, we want to give it to someone who will. So they need to prove that they have the ability to do that. We know that teenagers have a problem with compliance, and we know that as they grow up it becomes more difficult. Teenagers want to be like everyone else, and most kids don’t take medicines, so they decide that they’re not going to take their medicine, and they can get very sick and die. So we want to try to anticipate that and prevent that and show them the best way to be on the right path.
Laura O’Melia, RN, MSN, CPNP, Director of Transplant Nursing
Yes. It’s part of being a kid – and an adult, for that matter! You look at some of these kids and they’re on four or five meds, but then there are some that are on 20 medications, and it’s a lot! And they don’t feel an immediate benefit; you don’t take your transplant meds and be like, “Woo! Now I feel better!” It’s sort of like, “I don’t feel any different than I did ten minutes ago,” but we know that the meds are important. I think for a lot of kids that’s hard.
You do the best that you can. You explain it to them – it depends, again, on the age of the kid, is it the parents that are having the trouble, is it the kid? Make sure that they, the parent or the kid or both, are aware of the need and understand the risks that they’re running if they don’t take their meds or don’t come in for their exams or things like that. What I tell families is we can’t be there 24/7. We’re not going to be sitting in your living room or your kitchen telling you to take your meds. You have to figure out a way to do that. We’ll help you, and we have techniques that we know and logs that we can give you, and the nurses and the pharmacists put together sheets where the families can just check off when they’re given their meds, and we teach them how to prepare their pill boxes, and we do the best that we can to try to give them the tools. But ultimately it’s up to the patients and the families to do that and to check their vital signs and to keep an eye on things as well when they’re not here with us.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
How do you help children and teens stick with their treatment plan?
Melisa: If children/adolescents are not taking their medication on time, the main thing is to assess for the reason. It could be a variety of things. Do they not remember? Is it hard because it’s a new process for them? Or do they not want to do it? And if they don’t want to do it, why? Is it because they’re teenagers and they’re trying to be just like their friends and they don’t want to be different? Or is it a younger child who doesn’t like the taste of the medication or doesn’t know how to swallow pills? Are there problems with depression or anxiety? Non-adherence is a very general term: it’s really about trying to get at the root of what’s going on and how we can help make it better for transplant patients to have the most successful outcome and get back to their life.
Kris: And sometimes it’s not just about what the child is doing. Is there a communication breakdown between the parent and the child, or is it even larger than that? Is it the fact that they’re having a hard time even getting the meds? Is there something going on with their insurance or their pharmacy? Do they have a transportation issue? And again, that’s why it’s so important that we collaborate with Social Work and really see what’s contributing to that issue. Because it could be that they’ll take the medicine if it’s in the house, but it isn’t even getting there.
Melisa: Another very common thing that we see is, especially with teenagers that had the transplant when they were younger, I think the team and the parents sometimes expect them to know why they have to take their medications and why it’s so important, because they’ve grown up with this issue. What we find is that’s not true. When children reach a new cognitive level like during adolescence, they may have to be retaught; what was their initial medical condition, what was the need for the transplant, and why are these medications important?
Melisa Oliva, PsyD and Kristine McKenna, PhD, Transplant Psychologists
Do teenagers ever resist taking their medication? How do you handle that?
I could talk about teenagers all day. They hear about it before transplant, and they agree to respect the use of their donor’s organs. But there is normal adolescent rebellion and risk taking behavior. In one way, you are happy they are having a “normal adolescence”. But on the other hand, they know that if they don’t take their meds, they’ll die. It is often just bad judgment, however, the reality is that we have had adolescents who go to that extreme, and we lose their graft, and in some cases, they die. For most normal teenagers, they do not think they’ll ever die. For our transplant kids in particular, they’ve all been told they were going to die before and they didn’t, so they feel even more indestructible. It’s a hard stage to get through. We always say if you survive your adolescence in heart transplant, you’ll be fine, but sometimes they are their own worst enemies.
We have an adolescent non-compliance protocol, especially for the kids that are going off to college for the first time. We have them get med levels once a month, and for some kids, actually, they go to once a week if they can’t keep their levels up. So somehow knowing that people are watching helps them take their medication. We definitely do more education and more visits around the time of transition, either out of their parents’ house – and then we’ve had the families, parents with little kids, who have to come back in and be re-hospitalized, just because they’ve had a complication from not taking the medications right and for re-education. It is a therapy that’s very dependent on taking your medications every 12 hours really routinely.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
Non-adherence can be a big problem, and can cause patients to lose their transplants. We collaborate with our social workers, psychologists, and Child Life specialists to do anything we can to help these kids understand why it’s so important to take their medications as they have been instructed. If there is a barrier recognized, like they’re having a hard time remembering when to take their medications, we talk about alternative ways to help them. For example, setting an alarm on their cell phone or using a pill box. We offer whatever kind of tools we can to help them integrate medications into their routine to help them become more adherent. Sometimes, in collaboration with the physicians, we can make changes to their medication regimen. Whether it’s trying to simplify their regimen by changing the number of pills they have to take or number of times a day they have to take their medications, or switching them to pills because they don’t like the taste of their liquid medicines; we try to make their medication regimen as manageable as possible.
Jennifer Gilarde, PharmD