182 - TRANSITIONAL CARE FOR KD PATIENTS: A QUESTIONNAIRE TO RESPOND TO THE UNMET NEEDS

Background:   Several children affected by chronic diseases, with a high risk of disabilities, as children with autoimmune diseases, rheumatic diseases, autoinflammatory diseases, Kawasaki disease (KD), can reach adult age in good clinical conditions. However, they need continuous care and a multi-specialist team to support them.

The progress in the diagnosis and treatment of KD improved long-term outcome and an increased number of pediatric patients who require lifelong follow-up.

Implementation of a successful stepwise transition in patients with KD requires the presence of a structured and individualized policy that ensues the stepwise move from “family-based pediatric care” to “adult patient care”.

The need to define the standards and criteria for adequate transitional care are a current and debated topic.

In some realities, it is a path implemented with defined standards. In other countries, such as in Italy, it is a goal achieved only in a few centers. There are many projects in this field, often difficult to realize for health organization problems.

Timing of transition is important too, avoiding some mistakes, such realizing it too early, when the adolescent is not ready, or too late, when he is comfortable in a setting that still makes him feel "a child".

Methods: This process aims to give to adolescents and young adults with KD self-management skills, to support them in planning their future as well as their healthy peers and to offer the possibility to enjoy life even under the burden of a chronic disease.

A coordinated cooperative plan is operated by the stakeholders: the transition team, the family and the patient.

Furthermore, the transition plan must include the family pediatrician, the family physician; also the patients’ associations must be involved in the transitional care project, to highlight unmet patient’s needs.

We created a questionnaire for patients, to highlight their expectations to prepare an adequate communication for the transition.

The goals are: guaranteeing continuity in care, coordination, tailoring it to each patient; promoting communication skills, making decisions, taking care of themselves, gaining autonomy... and self-esteem!

Conclusion: We need to define: the essential minimum requirements of the transition office; the method of transition and its coordination; the completion of a document accompanying the transition.

However, the family pediatrician has a key role in "guiding" the patient and the family to a system of care dedicated to adults (family doctor, rheumatologist, cardiologist).