Transition of care in children with chronic disease

Abstract

Healthcare teams need to adapt to change as much as patients and their families

In this week's BMJ, a woman with cystic fibrosis describes her experience of living with the disease from childhood to adulthood.¹ Among the many challenges she describes is the “rocky road” of transition from paediatric to adult health care. She says that she would have given anything to attend a transition clinic when she was 16 years old, instead of going straight to an adult clinic at another hospital.

Cystic fibrosis was previously considered a lethal disorder of childhood, but as survival improves, the need for continuous care into adulthood becomes more important. For the past two decades the global cystic fibrosis community has recognised the importance of transferring care from paediatric to adult services, and has set an example for services in other chronic conditions to follow.²

Transition to adult care for any child with a chronic life limiting illness should not consist of just transfer to a doctor who treats adults. It should be a clinical and psychosocial process. Adolescence is a time of great change—a normal journey of transition from childhood to adulthood. It is a difficult and exciting time as shifts occur in emotional attachments, autonomy, self identity, sexuality, physical shape, philosophy of life, and vocation. For those with a chronic illness, this developmental stage is complicated further as the teenager takes responsibility for care and faces problems associated with morbidity, mortality, and limitations to life's options. Coping with these extra problems on top of the normal challenges of adolescence is an immense challenge, which is made worse by being cut off by the paediatric care team that the patient knows and trusts.

Fundamental differences exist between paediatric and adult chronic care. Paediatric care is often multidisciplinary, prescriptive, and family focused. It requires parental direction and consent. Adult care tends to be patient focused, and it encourages autonomy in making decisions about treatment and life choices. Professionals in adult care are familiar with the difficulties associated with sex, pregnancy, work, and raising a family in the context of chronic ill health.³

A successful transition process has defined stages. Firstly, the needs and benefits of a move to adult care are explained and discussed with the young adult patient and the parents. A combined clinic is then held where the patient and family meet with the “receiving” team for a multidisciplinary handover. An orientation tour of the adult centre is an important part of the journey. Finally, there is the last goodbye—a visit to ensure that all aspects of transition have been covered.⁴

Surveys show that patients and parents have a positive opinion of such transition clinics.⁵ The parents' biggest concern was whether their child would be able to care for their illness independently, although this concern was not always shared by the children.

Transition services have been developed for children with other chronic conditions, such as diabetes,⁶ renal disease,⁷ and complex congenital heart disease,⁸ in addition to transplants recipients.⁹ The principles are similar, although local resources and the underlying condition determine the details of care.

In the United Kingdom, as in many countries, transition occurs when patients are between 16 and 18 years of age, and it ties in with the educational curriculum and social needs. Although timing is generally determined by age, it may require review in people who are less able to care for themselves as a result of mental capacity or severe ill health.¹⁰

The hurdles for transition medicine lie as much with the healthcare teams as with the patients and their families. The attitude towards transition and the relationship between the paediatric and adult clinics is central to success.¹¹ Some paediatric units find it hard to let go of children they have looked after for so long. But holding on to patients who could benefit from the expertise of an adult orientated service causes as many problems as treating transition just as an administrative event.

Do we really need a transition service for all chronic paediatric conditions? The case for chronic disorders with an advancing morbidity and the need for large multidisciplinary input is clear and these services have been adopted in many countries worldwide, such as the United States, Australia, South Africa, and many countries within Europe.¹² However, the natural history of many childhood conditions has changed with modern treatment. For example, children with HIV find the transition particularly difficult as they move into a world with few adolescents and a healthcare environment mainly focused on the needs of homosexual men.¹³ And for some conditions there are no existing adult teams, such as immunodeficiency diseases like chronic granulomatous disease.

Some clinical teams and families remain reluctant to buy into the concept of transition medicine.¹⁴ But the considerable financial and emotional input in caring for the child with a chronic condition should not be lost in a failed transition process. This is not just about paediatric teams being unduly precious about the children they have steered through 17 difficult years. This is about preventing adults looking back and saying, “I would have given anything to attend a transition clinic when I was 16.”