Chronically ill kids who “graduate” from their pediatrician to an “adult" doctor often feel dissatisfied with the transition, says a new study.
Young patients who believed their "adult" doctors were “patient-centered” seemed to feel the most positive about their experience.
“It is well known that the transfer from pediatric to adult care poses additional challenges to families dealing with childhood chronic illness or disabilities - what is less well known is how young people themselves look at these challenges and how they experience this period of great changes and great expectations,” Dr. AnneLoes van Staa, who led the study, told Reuters Health in an email.
The problem is not just that kids may have known their pediatrician for years, while the “adult” doctor is a stranger. In other studies, for example, young adults with chronic illnesses who have transitioned away from their pediatricians said they receive less guidance from their adult doctors, the adult doctors are less accessible, they have to wait longer for appointments, and it’s harder to coordinate care among specialists.
“Our previous research has already demonstrated the resilience and strength of young people with chronic health conditions,” said van Staa, who is a researcher with the Rotterdam University of Applied Sciences in The Netherlands. “At the same time, I think that they deserve more and better support than they currently get during transition.”
The new study shows again how important it is to take steps that keep young adults with chronic conditions from disengaging with healthcare, van Staa said.
As reported in the Journal of Adolescent Health, van Staa and colleagues followed up on 1,001 young adults who had participated in their previous study as teenagers six years earlier.
Of the 732 who could be reached, 593 had been transferred to adult care – and 315 of those young patients agreed to complete an online questionnaire.
About one-third said they were very satisfied with their transfer, but one-fifth rated their experience as unsatisfactory. In general, men were more positive than women.
“Over half of the young people felt that they had not been involved in the decisions surrounding their transfer,” van Staa said. “This lack of preparation and participation may explain why so many young people (about a quarter of our total sample) were not in specialist treatment anymore - even though many of them had serious chronic health conditions.”
van Staa said one of the most surprising findings was the importance young people attached to the patient-friendliness of their new, adult healthcare provider.
“If they felt a trusting relationship with the new provider, then they were more positive about and more satisfied with the transfer,” she said.
Van Staa said healthcare providers’ first priority should be to build a bridge between pediatric and adult-oriented care. Ideally, she said, patients and parents could meet the new healthcare providers in advance, together with the old pediatric healthcare team.
“The study on transfer of care gives us a nice new tool to measure patient experience in the transition and it highlights an issue that helped give birth to the field of Adolescent Medicine,” Dr. Ellen Rome told Reuters Health in a phone call.
Rome is a pediatrician head of the Center for Adolescent Medicine at Cleveland Clinic Children's Hospital. She wasn’t involved in the study.
According to Rome, the field of adolescent medicine has flourished because of the gap in care that can occur when patients switch from a pediatrician to an adult doctor.
Rome suggested ways for parents to help empower their children to be better healthcare consumers throughout their childhood and into their adolescence and adulthood.
For example, Rome said, kids with chronic illnesses can bring lists of their health concerns to their pediatricians, along with any medications and treatment plans.
“If you're a kid with a chronic illness, create with your pediatrician a list of your medicines and health concerns. For instance, a teen might identify that ‘I have Crohn’s disease, thinning bones or osteopenia, and asthma. To stay in good health, I need these medicines. This is what I do with my meal plan to stay well. Here is how I manage my asthma, and these are my triggers,’” she said.
Rome said physicians can use tools such as ‘after-visit summaries’ to help kids and parents understand their treatment plans.
Rome noted that patient-centered care was a key finding for participants who were happy with their transition.
“When we think of healthcare as a partnership, it works better,” she said, “It works better from a disease prevention standpoint, as a wellness model, and a positive youth development model when we partner with youth and families to help them get the best healthcare and heath outcomes for themselves.”