Investment in tailored care for adolescents with rare diseases is essential for their health and wellbeing
14 September 2021
The transition to adult care for adolescents with rare diseases can be an extremely challenging process.
Advances in modern medicine mean that more children with rare diseases are living into adulthood than ever before. This is hugely positive, of course, but it raises new challenges as healthcare providers grapple with transitioning more patients from paediatric to adult services. This change often exposes significant gaps in care which, if not addressed, can impact both physical and mental health.
The transition from paediatric to adult care can be a daunting time for young people with rare diseases. They will likely need to graduate from the support of a healthcare team with deep knowledge of their (often complex) medical history, and with whom they may have developed relationships of trust, to a new team of providers. And this all takes place while the young person is going through the broader changes associated with adolescence.
Changes in adolescence can be especially difficult for people with rare diseases
As young people with rare diseases reach adulthood, they are generally encouraged to take more control of their treatment. While this supports greater independence, it may also lead to adolescents making decisions about their healthcare which they have not discussed with their parents or healthcare providers. As the parent of an adolescent, I know only too well the impact that hormonal, physical and psychological development can have in prompting behaviours which, to most adults, might seem erratic and irresponsible. It is little wonder that during this time of life, when risk taking can become worryingly commonplace, young people with rare diseases may push back against the advice of their healthcare providers and parents.
Adolescence is commonly a time during which people with rare diseases may lose touch with their healthcare providers and stop taking their medication. This can have a severe impact, translating into progression of the disease.
Adolescence is commonly a time during which people with rare diseases may lose touch with their healthcare providers and stop taking their medication.
What does effective transition to adult care look like for adolescents with rare diseases?
Young people with rare diseases need tailored care that supports and encourages them to become involved in decisions concerning their own health, with others recognising the validity of their opinions. They must be seen as partners in their own care in a way that facilitates collaboration and mutual understanding, and recognises the unique circumstances of the individual – not just as a patient but as a young person within a wider cultural and social environment.
At its heart, effective transition to adult care requires good communication and coordination between the young person, their family and the care teams involved. Above all, it requires a conscious and carefully planned transition process, which is organised to best meet the needs of the individual. Ways of doing this could include choosing the age of transition based on the person’s needs (rather than having a routine transition at 18), or designing the transition based on the facilities, expertise and capacity available to support the process.
It is also vital to ensure that the needs and concerns of the young person and their family are taken into account. Additional help, including psychological support, can allow the transition process to be designed in a way that empowers and encourages independence, so the young person is able to begin to effectively manage their condition.
At its heart, effective transition to adult care requires good communication and coordination between the young person, their family and the care teams involved. Above all, it requires a conscious and carefully planned transition process.
An essential aspect of effective transition is the availability of care tailored to the physical and emotional needs of adolescents, which is all too often inadequate. There are too few paediatricians who are formally trained in adolescent health. This was recognised by the European Academy of Paediatrics in its 2018 position paper, which called for countries to take this issue more seriously.
Empowering young people for the future
Young people with rare diseases already face a difficult road. The transition to adult services should not represent another hurdle that they and their families must navigate. Instead, it should be a time of growing independence and empowerment, which culminates in the achievement of good health and wellbeing.