The teenage years are prime time for experimenting with risky behaviors. One might assume that for teens growing up with a chronic disease like diabetes or cystic fibrosis, that wouldn’t be the case since alcohol can cause very serious problems for these kids.
But if Boston Children’s Hospital’s Elissa Weitzman, ScD, MSc, and Sharon Levy, MD, MPH, are right, that assumption could be completely wrong. According to a recent study the pair published in Pediatrics, chronically ill teens do exhibit risks for alcohol and marijuana use, and at levels similar to those reported for healthy youth. Those behaviors carry all the usual risks related to teen substance use (e.g., accident, injury), as well as unique risks related to their condition and its treatment.
Their study represents one of the first forays into understanding how chronically ill teens navigate the experience of growing up.
“Unprecedented numbers of young people are growing up with a chronic disease,” says Weitzman, who works in the hospital’s Division of Adolescent Medicine. “But by and large, while there are studies of chronic disease and studies of teen risk behaviors, little has been done to understand teen risk behaviors in the context of chronic disease.”
Chronically ill teens act like any other teens
Weitzman and Levy (of the hospital’s Division of Developmental Medicine) surveyed more than 400 youth seen in several chronic disease clinics at Boston Children’s, asking them about drinking, binge drinking and marijuana use. They also assessed participants’ understanding of whether alcohol interfered with their medications and laboratory tests.
The picture that emerged revealed that as far as alcohol and marijuana use go, teens with chronic conditions tend to act like other teens. Among the roughly 300 high school youth in the study, about 37 percent reported drinking, 13 percent binge drinking and 20 percent using marijuana within the last year—numbers comparable to national averages among all adolescents.
“We were surprised,” says Weitzman, who is also a member of the hospital’s Computational Health Informatics Program. “We thought that because of their special health risks and high levels of parental involvement, we would find lower rates of alcohol and other drug use among these youth.”
Worryingly, the data also revealed a clear relationship between drinking and problems with medication adherence. Nearly a third of teens who drank in the previous year admitted to regularly forgetting to take their medications over the prior 30 days; 8 percent said they’d regularly intentionally skipped doses.
“This was eye opening,” Weitzman says. “For each of the conditions these adolescents have, there is a constellation of problems that could cascade from non-adherence.”
Information is power
The research team noted one bit of encouraging news: that patients’ knowledge about whether alcohol would interfere with their medications had a big impact. Teens in their sample who didn’t know whether alcohol would interfere with their medications were more than 8.5 times more likely to have had a drink in the last year.
“These teens care about their health and about these interactions,” Weitzman notes. “They’re terrifically motivated to keep their symptoms under control. Knowledge may not be the most important factor in motivating behavior in general, but among these patients it may be the right lever for change.”
But why would teens who are already struggling to manage a chronic condition drink or use marijuana?
“They want to be like everyone else,” Weitzman explains, adding that she and Levy are working on a narrative experience study that aims to explore teens’ motivations in a more systematic way. “They want to do the things their friends are doing, and they see the same ads and marketing too. Novelty seeking and experimentation—it’s what teens do.”
Weitzman also suggests that drinking and marijuana may, in their minds, offer chronically ill teens a moment of escape. “They may be seeking some relief from the hypervigilance that comes with managing a chronic disease, or what they imagine or experience as symptom relief.”
Check your assumptions at the door
Weitzman notes that even though their sample was from a single institution, the results suggest that both primary care providers (PCPs) and specialists need to take another look at their teenage patients, especially if there are concerns about non-adherence.
“There is a subtle myth that teens with a chronic condition won’t drink or do drugs.”
“Clinicians should screen every one of their chronically ill patients for alcohol and drug use,” she states. “They should talk to their patients. Don’t assume if you’re a specialist that a PCP is having these conversations, or vice versa. Every clinical encounter is an opportunity.
“We know clinicians are concerned about the time they have available to talk about these kinds of issues with their patients, because they haven’t had any information about whether the risk is there,” Weitzman continues. “We think these data start to give doctors a baseline to work from for putting these issues on the agenda for their patient visits.”
“We see a lot of kids with chronic medical conditions in our program, and most of them have not been counseled on the impact of alcohol and other drugs on their disorder and it’s management,” says Levy, who also directs the hospital’s Adolescent Substance Abuse Program. “Few have ever been given a clear message that abstinence from alcohol and drugs is best for their health. We, as health care providers, are missing opportunities left and right with these kids.”
Similarly, Weitzman adds, parents of chronically ill adolescents shouldn’t assume that their child doesn’t partake in the same risky behaviors as her friends.
“Don’t sidestep conversations with your child about alcohol and marijuana,” she says, adding that doctors should also feel comfortable approaching their teens’ clinicians about having the conversation as well. “There is a subtle myth that teens with a chronic condition won’t drink or do drugs. Welcome and be open to talking about it.
“You shouldn’t assume the worst,” she concludes, “but you also shouldn’t assume that your child is immune from being a teenager.”