For a teenager or carer of a teenager with a rare autoinflammatory disease, what can be done to make the “transition” of care as comfortable and easy as possible?
Posted on: April 26, 2017

Comfortable care
Physicians do understand that any information given to people living with an autoinflammatory condition especially around their transition from child to adult care must be part of their educational program, which can be helped along with dedicated tools. For young children and teenagers, parents should ask the question of future adult care as early on as they can – a recommended age to start asking about adult care is anywhere between 12 and 14 years.

Differences between paediatric care and adult care
Knowing and understanding the differences between paediatric care and adult care is important and should always be carefully explained to teenagers. A transition plan should be set up and regularly evaluated by a physician, before transition, during transition and after transition, until at least 2 years after the transition has taken place.

We know that even when an accurate transition plan has been set up, a number of people can disappear from the healthcare system during variable and often lengthy periods. There are a number of reasons for this, for instance: they may have changed their way of life, moved home to another city etc. In this instance, people with an autoinflammatory condition need to have information available to them on experts in their new area and a succinct medical report of their Systemic Autoinflammatory Disease, in case they are admitted to emergency care. This should include the name of, and information about, their last expert physician (often this will be their paediatrician).

It is difficult to connect with teenagers especially if the chronic disease is the main reason for wanting this connection. Individual levels of care are required to form a positive relationship between the physician and the person living with an autoinflammatory condition, to understand the care they require, and to be empathetic to their symptoms.