Epilepsy Care Transition: Consensus Recommendations for Moving to Adult Health Care

What was studied

The Italian TransiDEA project developed recommendations for moving young people with epilepsy, Type 1 diabetes, or attention-deficit/hyperactivity disorder (ADHD) from pediatric to adult health care.

Three separate multidisciplinary panels, one for each condition, included clinicians, young adults, caregivers, and association members. Using a Delphi consensus method, participants assessed and revised recommendations adapted from international frameworks over two rounds.

What they found

After the first round, overall agreement was above 75% for all three conditions. After statements were revised based on participants’ ratings and suggestions, agreement reached 100% in the second round.

The final recommendations shared key features: begin transition planning around age 16, assign a named transition worker, and use standardized tools such as transition readiness questionnaires. For epilepsy, the recommendations emphasized tailoring the process to each person’s clinical situation. Other condition-specific recommendations included psychological support for ADHD and transition timelines extending up to age 22 for Type 1 diabetes.

Limits of the evidence

This was a consensus project; the abstract does not report testing whether the recommendations improve health or care continuity. Full agreement does not establish effectiveness. The abstract does not report panel sizes, participants’ ages, or detailed epilepsy-specific recommendations. The guidelines and tools still need validation, and the authors identify a need for greater resources and institutional support to ensure equitable access.

For families and caregivers

The recommendations offer a framework for planning the move to adult epilepsy care while allowing for individual needs. Key points include starting planning around age 16, identifying a named transition worker, and using readiness questionnaires. These are consensus recommendations, not evidence that these steps improve outcomes or ensure equal access to care.

What to watch next

Future validation of the recommendations and tools is needed. Studies in routine care could assess whether they improve care continuity, alongside efforts to address the resource and institutional support needed for equitable access.

Terms in this summary

Transition

The planned process of moving from pediatric to adult health care.

Delphi consensus method

A structured process in which a panel rates and revises statements over multiple rounds to build agreement.

Transition worker

A designated person who helps coordinate the move from pediatric to adult care.

Transition readiness questionnaire

A set of questions used to assess how prepared a young person is to move to adult care.