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Q&A: Allison Cohen on Transitioning from Pediatric to Adult Care

Monday, July 23, 2012

Allison Cohen, M.D., M.M.Sc., has been practicing one day a week in the Pediatric clinic as Adolescent/Adult Transition physician at Joslin Diabetes center over the past two years. Here, she talks about her experience working with this population, its triumphs and challenges.

How old are the people you work with?

Usually late adolescents to mid twenties, although we do have a few people in their early thirties who are still followed in the pediatrics unit.

That seems a bit long in the tooth, can you comment on that?

Many of these patients have been coming here since they were young children and have developed a strong rapport with their providers, especially the nursing staff. I serve as a bridge; the patients are able to see an adult provider while still maintaining the support and connection of the nurses in the pediatrics clinic until they are ready to make the transition to the adult clinic.

What intrigues you about these young adults?

They’re healthy for one, so my goal is to keep them that way. A lot of what I do is prevention. Young women, for example, need to know about birth control. Avoiding unplanned pregnancies is important to ensure that the women receive the proper pre-pregnancy planning and maintain metabolic control so they can have healthy babies.

Since the patients I work with are young, their whole life is ahead of them and they will benefit from the advances in diabetes treatment and technology that we are seeing. And many of them are fascinated by technology. It is such a dominant part of their lives and I can often engage them more in the management of their diabetes by utilizing some of these advancements, such as tools on the web, apps on their smartphones, and the latest pump and constant glucose monitoring systems (CGMS) technology.

How do you see your job?

I try to prepare the patients who see me for the adult world—to shift responsibility for their diabetes management from primarily others to primarily themselves. Their parents may have been reminding them to check their glucose or dose their insulin, and now when they are going to college or moving out, we have to develop systems for them to manage their diabetes when they are on their own.

I also help them navigate the different structure of the adult clinic. If I have openings I will take them on as adult patients when they are ready to make the transition, or if not, I introduce them to a physician who has a special affinity to this population. We have several physicians at Joslin who like working with young adults.

I also explain the logistic differences in administration between the pediatric and adult clinics. In Pediatrics here, for example, there are two staff who answer the phone so patients develop a personal relationship with them and feel comfortable that their needs will be taken care of. Appointments scheduling isn’t centralized on the adult side so patients need to be in a position to take a more active role in seeing that there needs are met.

What aspects of care do you concentrate on?

My first goal is safety, making sure patients avoid diabetes ketoacidosis (DKA), know how to handle alcohol and prevent and appropriately treat severe low blood sugar. I tend to be a bit more lenient about tight control during the college years. Once they enter the working world I am more focused on getting them to push for an A1C under 7 percent and developing more responsible self-care behaviors.

What role do patients’ families play in this transition time?

Families are still an important part of care, but the rules change when people turn 18. We have to ask the patient’s permission to discuss any aspect of their care with parents. Many patients continue to have their parents come to sessions. Sometimes it is only to drive them and other times the parents accompany them to their visits. This is often a challenging time balancing the needs of the young adult, and the concerns of the parents. This is the time that young adult patients need to determine how they want their families to support them and be involved in their diabetes care, and to communicate this to them.

What determines if a patient does well?

Often I find the patients that are doing well in other parts of their lives—taking responsibility for their studies if in college or on their job and living situation are the ones that do better with their diabetes care. Their organizational skills flow over into the self-management tasks needed for diabetes

When do you transition the patients to the adult clinic?

The patient and I decide together. We try to find a time when they have an adequate sense of security, and they are in a stable place in their lives. I try to avoid transitioning when other parts of their lives are in flux or they are in the midst of stressful situations. Age and level of control also play a role.

Is the Joslin alone in having a transition clinic?

I believe other large endocrine institutions have them, but I am not sure if they are set up similarly to ours. This population is at high risk of being lost to follow up, and I think that it is a positive step to develop more transitional programs to address the needs of this vulnerable population.