Moving on – The Journey from Paediatric to Adult Services
Research insights into transition to adult services and adherence
Jemma Day (Clinical Psychologist) and Dr Marianne Samyn (Consultant Paediatric Hepatologist)
King’s College Hospital
At first, most of the research into liver conditions in children and young people focused on survival. Now survival rates are excellent, research can focus on understanding what it is like growing up with a liver condition both with and without liver transplantation.
Mental health and liver conditions in adolescents
Having a liver transplant or chronic liver condition can bring physical challenges but can also impact upon how you feel emotionally and how you get on at school, college or work. Some of the young people we work with here at King’s tell us that they have to cope with all the normal things their friends do, like school, boyfriends and girlfriends, and getting on with their parents, but on top of all of that, managing a chronic health condition. Levels of mental health problems like anxiety, depression and eating disorders peak in adolescence, and rates are even higher in young people who also have to cope with a chronic health condition as well (1). We asked young people attending our adolescent and young adult clinics to fill in some questionnaires about how they have been feeling lately (2) which showed us that this is also true for young people managing liver disease. Nearly 18% experienced high levels of anxiety and 10% had problems with their mood. Young people told us that worrying about their condition and feeling as if they had less control over their symptoms affected their mood and how they feel. Young people also tell us that difficulties sleeping and feeling fatigued can worsen their mood; nearly a third of patients said this in our clinic, and other studies have highlighted this link as well (3). There is some evidence that feeling low and worrying about things (anxiety and depression) can make it harder to take medicine and come to hospital appointments (4;5), so we know it’s really important for medical teams to consider how young people are feeling as part of their liver care.
Coping with a liver condition at school as an adolescent
Young people also tell us that growing up with a liver condition can also make school or work extra difficult and about a third of people need some extra support with their learning at school. One study we are doing at King’s is looking at whether the need for support might be connected to the liver condition, and what we can do about it. Of course, poor sleep can also get in the way of working well at school, and young people often say they feel tired during lessons. Your team might be able to suggest some helpful strategies for managing problematic sleep or having extra time for exams and support at school, so this is a good thing to ask about at your clinic appointment if it becomes a problem for you.
We have known for a long time that it is difficult to take medicine every day, and young people tell us it is especially difficult as a teenager and young adult. Scientists used to think that your brain was fully formed by the age of 18 years, but now they know it keeps developing right until your mid-20s. These changes can make you feel emotions more intensely and to experience risk, rewards and danger differently. It also means that young people are more likely to focus on what matters to them today, rather than in a few years’ time.
Childhood liver conditions are rare so most teenagers will not know anyone else with the same condition as them. Young people tell us this can feel very unfair at times and that joining in with friends who drink alcohol, smoke and use drugs helps them feel ‘just like everyone else’, as does missing medication. One study of young people with different conditions (6) showed that having peer support can make it easier to manage these situations, and be healthier (7). We have a team of Young Mentors here at King’s who are trained to support their peers. Both mentors and mentees talk very positively about their relationships (e.g. “I wish I had something like this when I was younger“). After a peer support event at our centre, young people said they have a better relationship with their condition and felt more confident talking to professionals, 75% felt more okay about taking medicines/coming to hospital appointments, and 77% felt they can deal better with their disease as a result.
Transition to adult services
When you are a young person a lot of things change in your life from starting work or deciding to go to university, moving away from their family home, making new friends and developing their identity and sexuality. Having to manage a chronic condition during this time can make all this more complicated and unfortunately the health care service expect you to change from children’s to adult’s services during this time. Whereas you might look forward to moving on to adult service in some way, adult services are set up differently and in particularly if you and your family have had a long relationship with the children’s service it can be sometimes challenging. We know from experience and evidence in the literature that providing a dedicated service for young people makes a difference. At King’s we have a multidisciplinary team including doctors, clinical psychologist, nurse specialists, transplant coordinators, social workers and pharmacist who are all enthusiastic to look after young people aged 16/25 years to help with the challenges a young person with a liver condition might bring. We also organise information and support days for young people and parents and has a group of young mentors or patient experts who can give individual support to young people based on their experience.
- Pinquart, M., & Shen, Y. (2010). Depressive symptoms in children and adolescents with chronic physical illness: an updated meta-analysis. Journal of pediatric psychology, 36(4), 375-384.
- Hames, A., Matcham, F., Joshi, D., Heneghan, M. A., Dhawan, A., Heaton, N., & Samyn, M. (2016). Liver transplantation and adolescence: the role of mental health. Liver Transplantation, 22(11), 1544-1553.
- Taylor, R. M., Franck, L. S., Gibson, F., Donaldson, N., & Dhawan, A. (2009). Study of the factors affecting health‐related quality of life in adolescents after liver transplantation. American Journal of Transplantation, 9(5), 1179-1188.
- Annunziato RA, Emre S, Shneider B, Barton C, Dugan CA, Shemesh E. Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatric Transplantation. 2007;11:608–614.
- Fredericks EM, Magee JC, Opipari-Arrigan L, Shieck V, Well A, Lopez MJ. Adherence and health-related quality of life in adolescent liver transplant recipients. Pediatric Transplantation. 2008;12(3):289–299.
- Telzer, E. H., Fuligni, A. J., Lieberman, M. D., Miernicki, M. E., & Galván, A. (2014). The quality of adolescents’ peer relationships modulates neural sensitivity to risk taking. Social cognitive and affective neuroscience, 10(3), 389-398.
- Harden, P. N., Walsh, G., Bandler, N., Bradley, S., Lonsdale, D., Taylor, J., & Marks, S. D. (2012). Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. Bmj, 344, e3718.
- Fredericks, E. M., & Dore-Stites, D. (2010). Adherence to immunosuppressants: how can it be improved in adolescent organ transplant recipients?. Current opinion in organ transplantation, 15(5), 614.
- Watson, A. R. (2005). Problems and pitfalls of transition from paediatric to adult renal care. Pediatric Nephrology, 20(2), 113-117.