A consultation on coordinating follow-up of children and adults
FHU TRANSLAD proposes to coordinate the follow-up of patients, both children and adults, with rare developmental disorder diseases and/or an intellectual disability so as to avert any complications from these conditions by direct monitoring and to evaluate symptomatic treatments, in consultation with the other medical specialisations.
- The follow-up paediatric consultation is co-ordinated by paediatrician Dr. Marie Bournez.
- The follow-up adult consultation is conducted by Dr. Vanessa Leguy-Seguin, specialist in internal medicine.
The child-to-adult transition
The transition and transfer of adolescents and young adults under paediatric care for a rare disease is also a major issue for FHU TRANSLAD. In fact, this is a challenge for patients and their family circle, as well as for the healthcare teams, as the treatment path is often a multidisciplinary, at times complex, one. The life expectancy of children with rare diseases of primarily genetic origin is considerably extended with the aid of medical advances. Even so, the quality of life of many of these children is impaired, and their life prospects beyond childhood or adolescence are compromised
Once they grow out of puberty and adolescence, independence and freedom become the focus. This stage requires well-thought-out, realistic, appropriate life-planning, worthy of merit, and which receives their approval. After discussion, the main concerns shared by all of the adolescents/young adults were identified :
- Learning to become an adult, and to cope independently with their health condition
- Preparation for the future, and life-planning around their health condition
Consequently, FHU TRANSLAD decided to make every effort to facilitate this stage, through its TRANSLAD-Age project: The child-to-adult healthcare transition takes place in dedicated day clinics and enables young adults to effectively become key players in their own treatment. To find out more
Reference centre practitioners and patients associations have identified the need for resource persons to help with coaching and supportive care for patients and their families.
Through such contact, patients can :
- share with persons who have lived through a similar situation and can relate their experience,
- hold discussions that are less formal than in the medical setting. The circumstances may vary, and may include a diagnostic enquiry, disclosure of a diagnosis or follow-up.
The resource persons have undergone training in patient-focus and supportive care.
This pilot initiative is currently being managed for Elisabeth Cudry (Association VML - a patients association for lysosomal diseases) under a partnership agreement.