application for adolescents with rare or chronic diseases

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The Public Assistance-Hospitals of Paris (AP-HP) has launched a new mobile application to support adolescents with rare or chronic diseases: "La Suite Necker". Discovery.

In certain rare or chronic diseases, up to 30% of adolescent-young adults leave the care circuit. The “La Suite” transition space aims to respond to this problem, which is proving to be a real public health issue. It is a unique place designed with and for adolescents suffering from rare and / or chronic diseases, located in the heart of the Necker-Enfants Malades AP-HP hospital.

" The following Is a space for discussion in which adolescents suffering from rare and / or chronic diseases can meet and converse with a panel of professionals whose objective is to support them during the key stage of the transition to 'adulthood. This place offers information, support, awareness and prevention actions, with the aim of supporting the transition to adult services.

To support young patients, the “La Suite Necker” mobile application has been launched. It is intended for adolescents and young adults with a rare or chronic disease, to enable them to live better with their illness on a daily basis and gain independence. It allows young patients to organize the monitoring of their care path in a personalized way.

Funded by the Fondation des Hôpitaux com Paris-Hôpitaux com France, the mobile application "La Suite Necker" was designed and created by the transition space team "La Suite", coordinated by Dr. Nizar Mahlaoui and adolescents followed at Necker-Sick Children Hospital – AP-HP. The project was managed by the Rare Diseases Health Department NeuroSphinx.

This application aims to make the young actor of his health and independent and to explain the continuity of the care path between the pediatric sector and the adult sector. It can be used by any adolescent carrying a rare and / or chronic disease whatever their place of life and care in France. There are a number of features that allow you to:

  • create your profile and fill in all of your health information from the "my health passport" tab,

  • schedule personalized alerts for taking medication, refilling prescriptions and medical appointments,

  • prepare for consultations by noting questions to ask health professionals,

  • photograph its healthcare professionals and record their contact details (subject to their agreement),

  • photograph his medication and note their dosage,

  • view ehealth tutorials on transition,

  • be redirected to websites for adolescents and young adults specializing in: adolescence, sexuality, addiction and drugs, education and vocational guidance, or mental health.

The application is available on the app store and on Google Play.

Source: Public Assistance-Paris Hospitals (AP-HP)

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