MONTREAL – When young patients with eating disorders transfer from the pediatric to the adult care setting, they literally take their lives into their own hands–which sometimes leaves their families and health care professionals empty handed.
Parents and the health care team play a central decision-making role in the pediatric setting, but the adult system transfers full responsibility to the patient. Some adolescents are ready for this new empowerment. For others, the freedom to refuse treatment or to exclude family members can create many bumps along the road, noted experts at an international conference sponsored by the Academy for Eating Disorders.
“Everyone's fear is that the child will enter the adult system, get less attention, and eventually die,” said D. Blake Woodside, M.D., director of the inpatient eating disorders program at Toronto General Hospital. Indeed, the harsh reality is that, unlike pediatric programs, most adult eating disorder programs have no resources and often no legal jurisdiction to treat involuntary patients, he said.
But although many patients drift away from treatment at this time, the natural course of anorexia nervosa (AN), is such that the risk of death during this middle phase of the illness tends to be low, he said.
“There is a period of instability and risk of death in the early phase of the disease [around puberty] and the late phase after fifteen or more years, but through the middle phase it stabilizes and there are few deaths,” he said. “We have had hundreds of patients who have had a Body Mass Index of 14 for years. Sure, they are very sick, but they probably will not die.”
Many adolescents with eating disorders do not recognize or acknowledge their need to continue treatment as adults, said Debra K. Katzman, M.D., of the department of pediatrics at the University of Toronto's Hospital for Sick Children. In a recent survey of adolescents under age 18 with AN, only 14% anticipated that they would need treatment in the adult system and only 33% said they would participate in such a transfer.
She said it is useful for parents and pediatric caregivers to remember that aggressive treatment early in the course of the illness can have a positive outcome on child and adolescent growth and development and eventual long-term outcome.
“What we struggle with as pediatricians is the worry, knowing that we can make a significant impact on the patient's growth and development if we intervene. But once these patients are adults, intervention is less likely to make significant change.”
Dr. Katzman recommends that the transition from pediatric to adult care should be an extended and gradual one, starting as early as age 10. “The transition may take years. It's a process through which patients and their families are empowered to become active participants in their own care.”
The first step is actually a step back on the part of parents, said Leora Pinhas, M.D., psychiatric director of the eating disorders program at the University of Toronto's Hospital for Sick Children. Although the adolescent may be 18 years old, many teens with eating disorders are developmentally delayed–which makes this process particularly difficult. “We try to encourage them to accept help from those who have their best interests at heart,” she said.
But family dynamics can be very fragile, added Dr. Woodside. “If parents are sufficiently anxious and can't back off, the patient can cut off contact with them completely,” he explained.