Eating disorders: the transition years
Long term eating disorders have a profound effect both physically and mentally, and it is estimated that over a 20 year period approximately 10 per cent of people with anorexia die as a result of health problems or suicide.
Treatment for children and adolescents with eating disorders is distinctly different from treatment for adults. Navigating the transition from adolescent to adult treatment can be extremely difficult for youth.
How is London Health Sciences Centre approaching this critical transition period from adolescence to adulthood, dependence to independence?
Adolescents with an eating disorder who require treatment into adulthood can find themselves suddenly navigating a wholly different health-care system when they legally become adults at 18.
As youth graduate from adolescent treatment, they are thrust into an entirely new role of independence and self-management of their treatment program as adults.
A system-wide issue, there are several intensive hospital programs in the province, including at London Health Sciences Centre, which provide treatment for transition age youth with eating disorders.
At LHSC, those who are in the child and adolescent eating disorder program and require ongoing treatment are eligible to participate in cognitive behavioural therapy for transition aged youth.
The service was started about a year ago.
“The transition aged youth service is intended to offer youth a treatment option that allows them to continue participating in normal age-related activities while receiving treatment for their eating disorder. Although the youth are not required to involve family in the treatment process, they are encouraged to do so,” says Social Worker Lisa Boniferro, who works with transition age youth.
With this model of care the parents are involved but often to a lesser extent than before.
“The child and adolescent team is doing a great job preparing the patients and helping families who struggle with the change. Parents often recognize that their child needs to take on more responsibility but are nervous about the change,” says Dr. Philip Masson, a psychologist with the Adult Eating Disorders Service.
For parents the challenge is letting go, because with the family-based therapy they are used to having the primary responsibility for the youth’s eating, says Boniferro. She always offers to meet with the family at the outset of the transition program and there can be additional family meetings if the youth in the transition wishes.
“If the youth lives with their family you have to navigate that well. In the family session we talk about how to help increase what they are doing well and how to decrease what is not working so well. It is tough for the family to watch their loved one struggle and not play such an active role in change.”
Boniferro and Dr. Masson are looking at better integrating the move of youth from adolescent treatment to the transition age program.
“We are also looking at outcomes and collecting data over time,” says Dr. Masson. “We hope to compare our outcomes to similar programs in Ontario to ensure we are providing the best care possible.”
Treating transition age youth
The transition age youth service at LHSC is a structured 20-week cognitive behavioral therapy treatment that is goal oriented. The sessions are one-on-one, and take a phased approached to treatment.
For the first five weeks of the program the patient receives two 50 minutes sessions a week.
“This is our opportunity to get to know each other, determine what their symptoms are, orient them to a new model of treatment, and explain how the treatment will progress,” says Boniferro.
Although many patients have a preoccupation with food which leads them to know a lot about cooking, they often struggle to eat what they cook. In the session, sample meal plans and guidance are provided regarding practical things for them to make.
“Youth plan their meals to contain any food they wish, as long as they don’t compensate after (e.g. exercise, fast, or vomit)” she says. “We are trying to normalize eating and this can’t be achieved if compensatory behaviours are present.”
The next phase in treatment consists of nine weekly sessions focused on improving body image once their eating is normalized.
“We have to address the things that maintain the eating disorder mindset. With eating disorders, poor body image is typically experienced intensely and it is impairing. Many also have very rigid food rules,” says Boniferro.
Food rules can vary. For example, one person may have a rule that they can only have 60 per cent of the food that their parents put on the plate. Another may have a chocolate bar but only if they eat nothing but vegetables for the rest of the day.
“Participants identify their food rules and we intentionally break them by placing foods in their meal plans.”
Participants keep a detailed record of what they are eating and when, as well as their thoughts and feelings. There is always a formal review of the eating diaries in session with the patient to assess how they’re doing and keep both therapist and participant focused on treatment goals.
In the last phase, the sessions are held every two weeks and focus on relapse prevention strategies.
“Everyone has stressors come up, such as school and difficult relationships, and we need to make sure people know what to expect and how to address it without reverting back to the eating disorder behaviours,” says Boniferro.
She also meets with the patient 20 weeks after the last session to see how they are doing and review the relapse prevention plan. They can also add booster sessions, if needed.
The Ontario Community Outreach Program for Eating Disorders (OCOPED), which is funded by the Ontario Ministry of Health and Long-Term Care, works collaboratively with a provincial network of specialized eating disorder service providers.
It is a challenge to provide continuity of care, to bridge the paediatric system to the adult system in a way that is seamless for a particularly vulnerable age group in terms of mental health, says Dr. Amrita Ghai, Clinical Psychologist and an OCOPED member, who implemented the transition age youth program in the Eating Disorders Outpatient Clinic at St. Joseph’s Healthcare in Hamilton two years ago and also provides private eating disorder treatment at The Clinic on Dupont in Toronto.
In addition, patients in this age group are often in the midst of pursuing post-secondary education.
“How do we facilitate youth going away to university in another city while in the midst of a treatment program? The practicality of making plans to continue treatment when they move to another city for schooling are unique to transition age youth,” says Dr. Ghai.
At this point the use of tools such as the Ontario Telemedicine Network (videoconferencing) is not that common, and the future may also bring other modifications to make treatment more accessible to youth, such as texting appointment reminders and online completion of food records.
“Through collaborative efforts we are attempting to develop consistency in treatment elements and program evaluation,” says Dr. Ghai. “We are also attempting to share resources and learnings from the multidisciplinary OCOPED members in order to optimize treatment for this vulnerable group.”