Better Adult Epilepsy Care Needed for Teens in Italy

What was studied

This study looked at how young people with epilepsy in Italy moved from pediatric care to adult care. It was a multicenter, observational, prospective, qualitative study done at four regional epilepsy centers. The researchers interviewed young people who turned 18 between 2018 and 2022.

They also asked pediatric and adult neurologists to fill out questionnaires about the person’s epilepsy type, other health conditions, how epilepsy affected daily life, and details of the transition process. Thirty-seven patients participated in the study.

What they found

Many of the young people in this study moved into adult epilepsy care. Of the 37 participants, 34 began the transition process. At the time of interview, 30 patients were still being followed in the public adult service, while a small number had other outcomes, such as returning to pediatric care, seeing a private specialist, or having no specialist follow-up.

The study found substantial variation in how transition was handled. This included how long preparation lasted, how much time passed between referral and access to adult services, and how information was shared between services. Caregivers of patients with epilepsy and associated disabilities reported more difficulty getting referrals for multidisciplinary and specialized adult care, especially for rare or complex epilepsies.

Overall, the authors concluded that Italy needs more uniform and structured transition protocols, particularly for patients with disabilities.

Limits of the evidence

This was a small study from four epilepsy centers in Italy, so the findings may not represent all young people with epilepsy in Italy or other countries. It was mainly descriptive and based on interviews and questionnaires, so it can describe experiences and differences in practice, but it cannot show which transition approach works best.

The abstract does not give detailed results about seizure control, mental health, quality of life, or long-term outcomes after transfer to adult care. It also does not compare a standardized program with current practice, so it cannot show whether national guidelines would improve outcomes.

For families and caregivers

For families, this study suggests that many teens with epilepsy do move to adult care, but the process may differ depending on where they are treated. Families of young people with disabilities or complex epilepsy may face extra barriers when trying to access adult services that meet all of their needs.

The study supports the idea that more consistent transition planning may make the process more consistent and equitable, but it does not show which exact model is best.

What to watch next

Larger studies could help by examining structured transition pathways in more settings and tracking patient and service outcomes over time.

Terms in this summary

transition

The planned move from child-focused healthcare to adult healthcare.

multicenter

Done at more than one hospital or clinic.

observational study

A study where researchers watch and record what happens without assigning treatments.

prospective

A study that follows people forward in time from a starting point.

qualitative study

Research that focuses on people’s experiences, views, and descriptions rather than only numbers.

multidisciplinary care

Care from a team of different health professionals, such as neurologists, therapists, and mental health specialists.

comorbidities

Other health conditions a person has in addition to epilepsy.