The Ibsen-commissioned study identified widespread problems with the transition from pediatric to adult care, and drug companies are calling for more resources to help people manage the transition.
Ibsen, which sells several treatments to children and young adults, partnered with Harris Poll to survey about 1,500 people between the ages of 14 and 26, as well as about 1,500 parents, 200 primary care providers and 200 pediatricians. A US survey found that 71% of young people felt the adult healthcare system was confusing, and two-thirds said they wished they had been better prepared to leave pediatric medicine.
This concern was echoed by primary care providers and pediatricians, about 90% of whom said the United States is not adequately preparing teens and young adults to navigate the adult health care system. A similar proportion of physicians called for more support for people transitioning to adult care.
Access to care can be difficult during the transition. More than 40% of young adults reported experiencing periods without a primary care physician after leaving pediatric practice. 28% of young people had untreated health problems and 26% increased their use of the emergency room. Medical experts said it’s especially important for teens with chronic illnesses to avoid these temporary treatments.
Ibsen provides resources to help teens with her website Healthcare-Shift.com, which she launched last year. This website contains two pieces of advice, one aimed at people aged 10-14 and the other aimed at individuals aged 16-26. Resources for young people include a checklist for those turning 18, as well as guides to help individuals make medical appointments.
Several Ibsen products treat patients at the transition point between childhood and adulthood. Bylvay’s rare liver diseases primarily affect children and young people (PDF). Ibsen tested Dysport on children and adults with limb spasticity (PDF). In the pivotal Sohonos trial, the median ages of both groups were (PDF) 15.1 and 17.8 years.
Ipsen’s brain tumor drug Ojemda, also used to treat children and young adults, is sold in the United States by Day One Biopharmaceuticals and is approved for children six months and older. Day One is studying the drug in people up to age 25.

