Professor Deirdre Kelly
2010 BSPGHAN/Guts UK Development Award Winner
Title: An exploration of perceptions and views of the key stakeholders about what constitutes successful transition for young people with liver transplants.
Project Start Date: April 2011
Completion Date: September 2013
Twenty years ago, most infants and children with liver disease had little chance of survival. The successful development of liver transplantation (LT) means that up to 80% of children survive more than 20 years to become adults. Many young people and their parents find leaving paediatric units difficult especially because adult units are not familiar with managing young people who have survived chronic illness. In the past many of these young people do not do well following transfer to adult units as there has been a high rate of graft loss (loss of the transplanted liver) due to not taking their medication or not coming regularly to clinics. There have been few studies to find out exactly what the risk factors are for an unsuccessful transfer to adult care or how preparation for transition (transition readiness) in paediatric centres and management in adult centres influence long term health.
For this project Professor Kelly and her team asked patients and their parents (if possible) what they thought about the transfer process and whether or not they were well prepared and felt ready to move to adult services. They did this by interviewing individual young people and their parents before and after the transfer.
In addition they looked at the case records of over 100 liver transplant survivors who transferred from paediatric to adult services in two national liver units to find out how young people managed in the past. The researchers collected information 1 year before and up to 5 years post transfer about how often they kept their clinic appointments, whether they developed complications, what medicines they were taking, and how many died or required another transplant because their transplanted liver failed (graft loss).
The analysis of the case notes highlighted that the median age at transfer to adult care was 18.6 years and the main reason for liver transplant was biliary atresia, a liver disease detected in infancy. Ten (9%) patients died following transfer to adult care. The median time to death was 2.3 years (range 0.6-5.5). The case notes also showed that missing appointments, not taking anti-rejection medications regularly, and psychosocial issues (such as low mood, anxiety, social issues or excessive alcohol use) occurred more frequently among the deceased patients compared to the living patients.
The interviews yielded a wealth of information. Four main themes were identified from interviews with patients as being important factors in their lives and also for successful transitional care. These were:
- being different from their peers (e.g. social or visible differences),
- coping (adopting different coping strategies to manage their liver transplant),
- social support (the benefit of various types of social support) and relationships with health care professionals,
- and continuity of care.
Three main themes were identified from interviews with parents. These were:
- impact on life (the impact that having a child with a liver transplant has upon everyday life),
- protection vs. independence (striving for the balance between protecting their child and allowing them to be independent as they near adulthood),
- and relationships with health care professionals.
The researchers also analysed the interviews with health care professionals.
This project’s findings highlight the need for care that is appropriate for the developmental stage of the patients and that focuses on all aspects of being a young person with a liver transplant, and not just transition in isolation. Transitional care needs to be individually tailored to take into account the psychological needs of young people with a liver transplant. In addition, the impact that having a child with a liver transplant and transition to adult care has upon parents must be considered and support provided.
The researchers hope that the information from this pilot study will help set up a future study to measure the factors identified, to find out when young people are ready to move to adult services (transition readiness) and how best to look them so we can improve their long-term future.