Gina (not her real name) had been born with a defect in her liver, with ducts so damaged and narrow that the bile could not drain. In the first year of her life, she underwent two urgent operations. The first was an unsuccessful effort to convert a loop of intestine into a drainage system for her bile; the second was a lifesaving liver transplant.
Other than a single episode of rejection a few months later, Gina's new liver worked perfectly. Her visits to the hospital were limited to an annual clinic visit; as the years passed, she became a stunning example of pediatric transplantation's success.
Then Gina turned 14. Like other young patients I had cared for, she began having problems with her transplant as soon as she hit adolescence. She missed appointments, forgot to get her blood drawn and had sharp fluctuations in the blood levels of her immunosuppressive medications, a sign that she was not consistently taking her drugs. Her liver function tests began to deteriorate, and despite efforts by her doctors, nurses, social workers and family members, shortly before her 16th birthday, she would be in desperate need of a new liver.
I remember visiting Gina one afternoon, then speaking to her longtime liver doctor. "It's such a pity," the doctor said, shaking her head. "She's no different than every other teenager, except that her youthful indiscretions are a matter of life or death."
Nonadherence, or the failure to follow medical advice, is the most important cause of organ rejection in long-term transplant survivors. Indeed, it is a leading reason for poor outcomes in all chronic medical conditions. But teenagers are at particularly high risk. Studies have shown that more than half of all teenage liver transplant recipients are nonadherent, and they are four times more likely than adult patients to take their medications at the wrong time or to forget to take them.
For years, health care professionals in transplantation and other medical fields have struggled to address adolescent nonadherence, with little success. Many of the interventions proposed to help this age group have been cumbersome at best and awkward and potentially demeaning at worst. One potential solution, for example, has a clinician first identifying teenage patients who have been nonadherent, then increasing the frequency of their clinic visits and lecturing them about the importance of taking medications.
It is not hard to see why a teenager might not respond.
I recently thought about Gina and patients like her when a friend recounted a night out at the movies with his own teenage children. While he and his wife sobbed, his children sat in the theater unmoved. "They were doing this," my friend said, folding his hands in his lap and flapping his thumbs wildly while looking up and down between an imaginary movie screen and an invisible qwerty keyboard. "I started thinking I should text them the next time I want to get their attention."
My friend, it turns out, was on to something.
This past month in the journal Pediatrics, researchers at Mount Sinai Hospital in New York published the results of a study showing that text messaging could significantly improve the rate of adherence among young liver transplant patients. Using a program called CareSpeak, the researchers issued text messages to a group of 41 pediatric liver transplant patients. The text messages reminded the patients to take their medications, which ranged from one to three different pills once or twice a day.
Over the course of a year, investigators found that with text messaging, patients were more likely to take their medications than they had been before. Moreover, while 12 of the young people experienced rejection episodes in the previous year, only two did so during the study.
"Nonadherence can be a vicious circle, and it is difficult to penetrate this specific age group," said Dr. Tamir Miloh, assistant professor of pediatrics and surgery at Mount Sinai Hospital in New York and the lead author of the study. "Once the cycle starts, these children have to take many more toxic immunosuppressants, and that makes adherence even more difficult.
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