Dr. M. is Melissa K. Cousino, Ph.D., Assistant Professor in the Department of Pediatrics and Attending Psychologist at the University of Michigan Transplant Center/C.S. Mott Children’s Hospital. She specializes in caring for children with heart failure and after a heart transplant. Dr. Cousino is a past recipient of research support from Enduring Hearts. I want to thank Dr. Cousino for taking the time to share her expertise with us.
Enduring Hearts, Dr. Robert Boucek ” Dr. Boo” and Dr. Cousino share their discussion and insights on how to support teenagers post-transplantation.
Dr. Boo. I asked Dr. M if she would share with us some of the experiences she has had with families when their child develops into adolescence.
Dr. M., I will start by telling you the story of Lindsey, a 17-year-old female who underwent heart transplantation for heart failure due to dilated cardiomyopathy at the age of 10. Lindsey’s post-transplant course has been uncomplicated, and she has not had any rejection episodes. She is a senior in high school, an active member of the student drama club and volleyball team, and a volunteer with the local animal shelter. At a recent checkup with her cardiologist, she and her parents were given a reassuring clinical assessment. The blood levels of her medications were right where they should be. Her parents explained that they have been providing less monitoring of Lindsey’s medication administration. Her parents shared that they have started to tour local colleges.
Dr. Boo. All that does sound reassuring. What is the significance of her medication blood levels?
Dr. M. Having Lindsey assumes the responsibility of taking her medications does help to promote increased independence in her health management. The medication blood levels indicate whether she is taking her medications as prescribed. We call that medication adherence. But there were a few changes that had us worried about her. Her weight had gone up 7lbs. since her last visit. On further discussion, her parents noted she is sleeping more throughout the day and on the weekends.
Dr. Boo. From what I remember teens do have different sleep habits. What is the concern?
Dr. M. Yes, but we should not be quick to dismiss all to “adolescence”. During her clinic visit, her cardiologist observed that Lindsey appeared more withdrawn when compared to her previous visit 6 months ago. Lindsey deferred to her parents to answer most questions and was unusually pre-occupied by her phone. The cardiologist asked me as the transplant psychologist to meet with Lindsey one-on-one for a check-in. The adolescent and young adult years can be a particularly high-risk time for transplant recipients. Non-adherence to the medical treatment regimen is strikingly high among this group,1 with some researchers indicating non-adherence rates of 50-65% among teenage transplant recipients.
Dr. Boo. Why would anyone who has had a heart transplant not take their medications?
Dr. M. It is usually not purposeful. Busy teenage lives, coupled with still-developing brain systems, can lead to forgetfulness. In addition, rates of anxiety and depression increase in adolescence/young adulthood among both healthy adolescents and adolescents with medical care needs. In fact, nearly 1/3 of parents of pediatric post-heart transplant recipients reported their adolescent children to have significant emotional/behavioral problems.2 It is common for adolescents in general, and adolescent heart recipients in particular, to need some help with identity formation, body image/self-esteem issues, peer relations, and separation from their parents. These “stressors” will impact their physical and emotional health outcomes and should be specifically addressed by their health care team.
Other characteristics of adolescents can complicate their transition to adulthood. Risk-taking and unhealthy behaviors are also greater during this adolescent period. For example, among a sample of adolescents and young adults post-heart transplantation, 11% endorsed smoking, 11% had used street drugs, 37% reported a poor diet, and 89% noted they exercised infrequently.3 In addition, increased independence in healthcare management and transfer to adult transplant care is often initiated during this higher-risk period of adolescence and young adulthood.
Dr. Boo. I understand how complicated the transition from childhood to adulthood can be and how having the need for continued medical care adds more complications. How do we help families and adolescents navigate this time?
Dr. M. To best support our teens and young adults post-transplant, several steps can be taken. First, regular assessment of mental health of all post-transplant patients should be a priority of the healthcare team. At the very start of the heart transplant process, it is helpful to involve mental health professionals in your team. Beginning a trusting and familiar relationship with a psychologist, therapist or social worker as part of “standard” transplant care can promote openness to intervention in later years to help identify signs of potential challenges, such as what happened with Lindsey. Second, it is so important to validate for young recipients that life post-transplant can be hard – and it is indeed normal to have periods of sadness, anger, worry or upset. Parents and caregivers should be attuned to changes in their teen’s behavior or functioning. For example, signs that a teen may need additional support include changes in sleep or eating patterns, withdrawal from preferred activities, and/or declining grades and motivation. When parents notice such changes, they are encouraged to have both an honest discussion with their teen and follow-up with their pediatrician and transplant team about any concerns. Third, although independence in health care management is necessary for successful adulthood, continued parental monitoring of medication administration is necessary throughout the early adolescent years. Parents may negotiate a plan for check-ins with their teen. For example, if a teen has not taken medications from the pillbox 1 hour after the usual time, a parent could provide a reminder.
Returning to Lindsey, she acknowledged to her transplant psychologist that she has been feeling more down and anxious as of late. She is overwhelmed by the prospect of college applications, and despite a desire to “be normal” and live away from her parents, she and her parents worry about her ability to live independently, keep up with college coursework, and manage her daily healthcare demands. She notes her friends don’t have to worry about all this “heart stuff.” As a result of low mood, she has been sleeping more and eating unhealthy foods. The increased weight is further impacting her self-esteem and mood. Her poor sleep patterns resulted in frequently missed medications, which her parents were unaware of. She and the psychologist agreed with the following plan:
1. Regular cognitive behavioral (CBT) oriented psychotherapy. This type of therapy is the “gold standard” treatment for emotional and behavioral problems, as well as medical adherence difficulties. Through CBT, patients learn how thoughts, behaviors, and feelings interact – and learn coping skills and problem solving to address target areas.
2. An honest discussion with her parents to update them on how she has been feeling and
3. Negotiate a medication monitoring plan to promote both her independence and adherence.
Dr. Boo. We do need to learn more from young adults who have navigated both heart transplantation and adolescence. Are there resources where we could learn more about the adolescent transitions to adulthood?
Dr. M. The resources below may be helpful for teens, young adults, parents, and caregivers. There are also some great apps listed for helping to promote medication adherence. Many of my patients use their smart devices (Alexa, Siri) to remind them it is time for medications! In addition, focused research efforts must continue to be committed to the assessment and intervention of adolescent and young adult adherence behaviors, emotional functioning, and transition readiness among pediatric heart transplant recipients.
I_Heart Change, Transition Readiness Resources: https://iheartchange.org/welcome.aspx?ReturnUrl=%2f
Passport for Health by SickKids, A customized, wallet-sized card with one’s medical information: https://www.sickkids.ca/myhealthpassport/
Mango Health, Medication Reminder App for Phone
Transplant Hero, Medication Reminder App for Phone
National Alliance on Mental Health, Teens and Young Adults: https://www.nami.org/Find-Support/Teens-and-Young-Adults
Disclosure Statement: Dr. Cousino does not have a financial relationship with a commercial entity that has an interest in the subject of the submitted article. Her research is funded by the National Institute of Health.
- Dobbels F, Damme‐Lombaert RV, Vanhaecke J, Geest SD. Growing pains: Non‐adherence with the immunosuppressive regimen in adolescent transplant recipients. Pediatric Transplantation. 2005;9(3):381-90.
- Cousino MK, Schumacher KR, Rea KE, Eder S, Zamberlan M, Jordan J, Fredericks EM. Psychosocial functioning in pediatric heart transplant recipients and their families. Pediatric Transplantation. 2018;22(2):e13110.
- Stilley CS, Lawrence K, Bender A, Olshansky E, Webber SA, Dew MA. Maturity and adherence in adolescent and young adult heart recipients. Pediatric Transplantation. 2006;10(3):323-30.