At first glance, treatment of the young adult seems comparatively easy: their metabolisms have slowed to the normal adult pace, most medications are FDA approved, and they (finally) tend to present with symptoms of just one or two diagnoses at a time. However, nature gets in the way, and the normal developmental tasks of transitional age youth (TAY) make the situation much, much harder than merely writing the prescription. In fact, just getting them to fill the prescription requires a finesse that treating younger kids doesn’t. Treating TAY requires you to get patients to accept responsibility for their disorders, which means accepting their disorders as part of themselves. Just who falls into the category of TAY? In general it is patients ages 16 to 24.
Adolescents are able to assess risk as well as anyone else, but they are not able to override their emotions while making decisions. In part this has to do with the trajectory of brain development: the nucleus accumbens develops much earlier than the prefrontal cortex. Not only does this explain adolescent risky behaviors around sex, alcohol, and cell phones, it means that if adolescents are prescribed medications, they often don’t take their meds. One study found that in a group of kids ranging from 8–17, medication compliance is at its lowest among 16–17 year olds. Bullock and Patten looked at compliance with psychiatric medications in patients ages 15 to greater than 65, and found that adolescents have the highest rate of non-compliance (more than two thirds) and compliance steadily improves over the lifespan, dropping to a low of 27% among people older than 65 (still relatively poor compliance). (Bulloch AGM and Patten SB, Soc Psychiat Epidemiol 2010;45:47–56).
So why don’t people take the medications we prescribe for them, after they have worked so hard to come see us? The three reasons that were most commonly cited in the Bullock study among patients of all ages were they forgot, they felt better, and they wanted to try to change without medication. However, TAY have additional pressures that bring to bear. In a study of non-compliance among adolescents with ADHD, the most frequent reason for non-compliance was a sense that the medication would fundamentally change them in a way that was false (Charach A et al, Harv Rev Psychiatry 2008;16:126–135)—that it is a threat to their identity. Additional reasons given by TAY kidney transplant patients—who presumably were facing life threatening consequences for non-compliancea—included “a sense of domination by their medical regimen,” “resentment about feeling different,” “lower self-esteem,” “negative reaction by peers,” “a loss of a sense of belonging,” and “uncertainty about the future,” all concerns we hear from our own patients regularly (Bell LE and Sawyer SM, Pediatr Clin North Am 2010;57(2):593–610).
Goals for Treatment Therefore, the goal of the treatment team working with transitional age youth has to be to reconcile treatment with normal development and identity formation by addressing these needs directly.
First, your manner with the patient matters. Be serious and professional—they’ll respect you more—but also warm and caring—they’ll like you better. Make your explanations developmentally appropriate, both cognitively and by acknowledging that the adolescent has values about sex, drugs, and/or goals different from your own. Don’t tell the patient never to drink alcohol “because of your meds” if drinking is what their friends are doing. They will stop taking their medications rather than be the odd man out. Instead, teach them the risks and benefits and help them decide ahead of time (before emotions get in the way) how to manage those risks in concrete terms. Help them decide what they will say to their friends if they choose not to drink, or how many drinks are okay, or how they can tell when they’ve had enough. Similarly, simplify regimens as much as possible to make it easier, and less public, for them to comply.
Self-determination is a driving need in TAY, so a smart practitioner will gear discussions of treatment to encourage patients to make their own choices. Offer options for patients and help them understand your reasoning. In turn, be sure you understand and address patients’ reasoning and emotions that may come into play. Encourage them to ask questions and become savvy consumers of medical care. Being able to stump you with something they’ve researched on the Internet will go a long way toward helping them feel competent and in control. (Be sure the websites they’re using are reliable.) Help them problem-solve rather than give them the answer.
Identity, desirability, and acceptability to peers are all driving forces for TAY, and they are quite intolerant of their own imperfections. Mental illness is, unfortunately, an imperfection of which our society is also quite intolerant, so helping TAY clients realize that their illness is merely a part of them, not the whole, is key. Ask about their entire life, and acknowledge their triumphs as well as their symptoms. I tell my patients their mental illness is like being tied to a large, ill-mannered dog. It gets in the way, it needs to be managed at all times, but in the end, it’s not who they are. Peer education and peer recreation groups can be helpful to normalize the experience of mental illness.
Lessons for Your Patients Management is power, and this is developmentally an opportune time to teach patients that careful management of their disease is not enslavement to the disorder but freedom. Now is the time to work on psychiatric advanced directives. Help them recognize the larger pattern of their own disease: what they look like when things are good, when they are starting to get worse, and when they are going badly. Get them to put down on paper how other people can recognize where in that cycle they are and how best to assist. If they have a mental illness that may leave them incapacitated at times, due to psychosis, suicidality, paralytic anxiety, or anything else, help the patient decide who should intervene and how. This gives them control even when they are out of control. It also gives you the advantage of being able to point to the advance directives when they are out of control and say, “Look, this is what you wanted. We are following your instructions. You are still the boss.” For more information about how to draft a psychiatric advance directive with your patient, see www.nrc-pad.org.
This is also the time to teach them how to manage the medical system. Help them get copies of their medical records and insurance information. Help them become responsible for making their own appointments and filling their own prescriptions, but don’t let them fail. Be sure they know the names of their medications, what they look like, and what they are used for. Help them understand how their insurance works.
The key to treating transitional age youth is empowering them to become the prime mover. Help them see themselves as more than a disease, but a person first, then a person with a disease they want help managing so it doesn’t get in the way of the more important stuff. Teach them to be an expert in their disease, not just well-informed but able to educate others. Most importantly, help them see themselves as in charge and everyone else, especially their treatment team, as in a supporting role.