In Lyon, a care pathway to support adolescents affected by chronic illnesses

2024-04-24 03:45:04

That day, Inês and Jordi, both 16 years old, came together to attend a workshop at the Women-Mother-Child Hospital (HFME) of the Hospices Civils de Lyon (HCL). Inês, in first grade, and Jordi, in second grade, have in common that they are affected by systemic lupus.

In this rare autoimmune disease, which affects around 50 people out of 100,000, or more than 25,000 patients in France, the immune system becomes disrupted and turns against the body’s own cells, producing autoantibodies. in excess, which can cause inflammatory reactions and damage to various tissues (skin, joints, vessels, muscles) or blood cells, responsible for visible and invisible disabilities.

Inês and Jordi are both part of the Ariane program, led by the HFME des HCL and the Nord-Ouest hospital in Villefranche-sur-Saône (Rhône), which aims to support the transition to adulthood of patients from of 12 years, in order to avoid interruptions in care.

The Lyon project was limited to four groups of chronic childhood diseases: severe persistent asthma, hemorrhagic diseases (for example hemophilia), chronic kidney pathologies and inflammatory rheumatic diseases. Some patients have been ill since birth, others since adolescence, but for almost all the illness will not disappear in adulthood. Between 1.5 million and 3 million children in France are affected by chronic diseases: cystic fibrosis, congenital heart disease, juvenile idiopathic arthritis, pediatric cancers, etc.

Denial of illness

“Apart from a few pathologies (type 1 diabetes, asthma, allergies, etc.) which are common in children, most chronic pathologies beginning during childhood are rare diseases”, notes Mélanie Romier, nurse coordinator, who co-pilots the Ariane project, which will last five years. Some 200 patients will be included at the HFME and fifty at the North-West hospital in Villefranche-sur-Saône. About a hundred have been done to date.

This is a so-called “article 51” system, financed to the tune of 850,000 euros for five years by the Auvergne-Rhône-Alpes regional health agency and Health Insurance. If it is demonstrated, after an evaluation, that the support allows an improvement in the quality of care and generates savings for Health Insurance, this specific course for adolescents will be extended to the entire territory.

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“For the patient and his family, the transition process most often marks the end of a long relationship of trust with the pediatric team. The proposed change represents the unknown and frequently arouses a lot of apprehension and can even be perceived as abandonment.underlined Swiss and Belgian doctors, in the Swiss medical journalin 2008.

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