Young people with chronic illnesses face uncertainty when transitioning from pediatric to adult care

Young people with chronic illnesses face uncertainty when their care is transferred from pediatrics to adult-oriented health professionals. A new study in the Journal of Adolescent Health has found that one in five such young adults said the transfer of their care was unsatisfactory.

The researchers studied 518 adults with various chronic conditions who had participated in a survey about their care in 2006, when they were 12 to 18 years old. Six years later, in 2012, they were questioned about their experience with the transition of their health care away from pediatrics. All were patients at Erasmus Medical Centre-Sophia Children's Hospital in Rotterdam, the Netherlands.

Ten percent were found to still be receiving care in pediatric units, 65 percent had transferred to adult care, and 25 percent were no longer in treatment. Of those who transitioned, half said they were satisfied with their transfer of care while just 24 percent reported that they met their new adult-centered care provider before being transferred.

The most important indicator of satisfaction with the transfer of care was whether the patient thought it was patient-centered, said lead author AnneLoes van Staa, R.N., M.D., Ph.D., of the Institute of Health Policy and Management at Erasmus University in Rotterdam. "Having 'voice and choice' is very important to adolescents," she said. "One of the most disturbing findings is that the majority of young people felt they had not been involved in decisions surrounding the transfer.

These findings reinforce those from similar studies done in the U.S., said Paul Sagerman, M.D., associate professor of pediatrics at Wake Forest University School of Medicine in Winston-Salem, NC. "There are multiple components to a successful transition process," he said. Preparing the patient for the transition and collaboration between the pediatric and adult specialists are important parts of the process, he said.

In 2011, the American Academy of Pediatrics published clinical guidelines on the transition to adult care for all patients, not just those with a chronic illness, Sagerman said. Furthermore, he observed that transitions may be easier for patients with conditions that are also common in adults, such as asthma. Patients with cystic fibrosis or congenital heart conditions may stay with their pediatric healthcare providers simply because providers of adult care are not as familiar with these conditions, he said.

The Dutch study did not look at what types of conditions the patients had. "Most likely, however, differences between conditions are not the issue at stake here because the challenges in transition are usually not disease-specific, but generic," van Staa added.