For people living with rare autoinflammatory conditions, what does it mean to get “lost in transition” when changing from paediatric care to adult rheumatology care?
Posted on: April 26, 2017

Transitioning from child care to adult care

  • Adult specialist physicians need to receive specific information on autoinflammatory conditions to help people living with them. Transition of care from childhood to adulthood can be a challenging process.
  • To ensure that care and treatment is continuous and the transition is smooth when young people become adults, paediatricians must start conversations about transitioning as early as possible. It is recommended this occurs between 12-14 years of age. In addition to open communication between the physicians, the person living with the autoinflammatory condition and their families/ caregivers can build dedicated programmes to guide this process; speak to your physician about specific programme options.
  • Paediatricians can also help to identify suitable adult specialists who can be considered when the person living with an autoinflammatory condition is ready to transition into adult care.
  • Staying informed: It is also very important to keep parents and caregivers informed and supported during the transition process which is also stressful for them. Parents are encouraged to progressively accept that one part of the consult must be realized with the teen alone.
  • Paediatricians and adult specialists must be aware of frequent adolescent at-risk behaviors like low adherence to treatment, addictions and sexual wandering.
  • Families and people affected by autoinflammatory conditions can be provided with evaluation and education tools to enable healthcare professionals to effectively manage their transition plan.