WASHINGTON, D.C.—The teen years are turbulent, especially for adolescents with rheumatic diseases. When treating teenage patients, rheumatologists must assess unique health risks and talk openly about risky behaviors, said experts during a session titled, “Puberty, Adolescence and Rheumatologic Disease,” at the 2012 ACR/ARHP Annual Meeting, held here November 9–14. [Editor’s Note: This session was recorded and is available via ACR SessionSelect at www.rheumatology.org.]
Adolescents go through dramatic psychosocial, psychosexual, and physical changes, said Frank M. Biro, MD, professor of clinical pediatrics at Cincinnati Children’s Hospital. These changes affect how these patients interact with healthcare professionals and how they view their disease, said Dr. Biro. In puberty, reactivation of the hypothalamic–pituitary–gonadal axis spurs intense growth and development, so teens see dramatic changes in body mass index and body composition.
Discussing Risky Behaviors
In teens with rheumatic diseases, however, pubertal changes like adrenarche, thelarche, gonadarche, and menarche may be delayed, he said, causing emotional reactions like poor self-image that may have serious ramifications. “Youths with chronic conditions are as likely or more likely to engage in risky behaviors with greater consequences,” Dr. Biro said. Teens may use drugs, tobacco, or alcohol or engage in sexual activity to fit in with peers, Dr. Biro said.
These behaviors can be more devastating in adolescents with already compromised immune systems, he noted. “Tobacco use can accelerate the development of cardiovascular disease in dermatomyositis and systemic lupus erythematosus. Alcohol use increases the hepatotoxicity of methotrexate,” he stressed. Rheumatologists must communicate carefully with teen patients to assess risky behaviors and psychosocial problems, he concluded.
Such dialogue is important but challenging, said Margaret Blythe, MD, professor of pediatrics and clinical gynecology at Indiana University and Riley Hospital for Children in Indianapolis. Teen patients assert their independence by questioning everything, even asking rheumatologists why they need to take their medications. In response, build rapport through dialogue to help this patient understand why compliance is important for achieving long-term career or life goals, Dr. Blythe suggested.
Earlier adolescence is marked by a strong desire for privacy. Ask these patients to journal, writing down their thoughts about their disease, body changes, or medications, Dr. Blythe said. “There are times when they will come out with very impulsive thoughts, and these can be hurtful to parents, but they tell you a great deal” about their potential behavior risks.
Eating disorders and drug and alcohol use often are seen in middle adolescence, from ages 14 to 17, Dr. Blythe said. “Talk about use of marijuana or alcohol in a safe space. Teens will often have tried things, but it doesn’t mean they’ll become dependent on a drug just because they’ve tried it,” she said. Spend more time alone with these patients without their parents present to facilitate honest dialogue, she said.
Toward the end of adolescence, teens shift to becoming more responsible for their disease management and adopting a more logical adult thinking processes, Dr. Blythe said. In these patients, stress that alcohol consumption could interfere with arthritis medications rather than simply forbidding its use because they are too young. Some older teens have negative body image due to scars, obesity, delayed puberty, and physical disability. “They may have less social opportunities with their peers, feel excluded, or even harassed. It’s important to screen for these issues,” Dr. Blythe said.
The Importance of Safe Sex
Although sexual intercourse rates among U.S. teenagers did not change in the last decade, remaining at 47.4%, many adolescents do not use condoms or birth control, Dr. Blythe said. Studies show that teens with rheumatic diseases also become sexually active despite body image issues or even physical challenges like pain during intercourse. Teens may not speak openly about their sexual behaviors out of fear of recrimination or embarrassment, Dr. Blythe noted. “You have to go with the flow in order to find out what their risky behaviors are,” she said. Approach the subject by stressing that the goal is to be healthy, not because sex is wrong. Oral sex is more common than coital sex among teens, Dr. Blythe said. Adolescents may engage in oral or anal sex to avoid pregnancy, so screen for chlamydia, gonorrhea, or trichomoniasis.
Pediatric rheumatologists, pressed for time with a high patient load, often don’t screen for alcohol use or sexual activity, Dr. Blythe said. They may be underestimating risk among these patients or not feel that they are the appropriate clinician to address sex, she said.
However, rheumatologists often are these patients’ only providers of care, said Paige Hertweck, MD, chief of gynecologic surgery at Kosair Children’s Hospital in Louisville, Ky. Because of the unique health risks associated with pregnancy for this patient group, pediatric rheumatologists should discuss contraception and sexual behaviors, she said. About 40% of juvenile rheumatoid arthritis patients are on methotrexate, which is contraindicated with pregnancy, she noted. Other commonly prescribed drugs like leflunomide, thalidomide, and cyclophosphamide also carry serious risks for fetuses. “For girls with lupus who have an increased risk of complications during pregnancy, you probably need to consider contraception almost mandatory,” she said.
Condoms, although effective at preventing pregnancy and sexually transmitted infections (STIs), are not adequate for adolescents, who may need contraception that requires less compliance, Dr. Hertweck said. Preferable methods for these patients include intrauterine devices, including copper and low-dose progestin-releasing models; Depo-Medrol acetate injections, which may affect bone mineral density long term; or progestin-only implants, which may cause breakthrough bleeding that may alarm adolescents.
Girls with rheumatic diseases may have longer periods or menstrual cycles, indicating ovary-related problems, Dr. Hertweck said. Pediatric rheumatologists should use the menstrual cycle as a vital sign and discuss timing or duration of periods.
She recommends using questionnaires designed for screening sexual behaviors in adolescents and speaking with patients without parents present. “You are the people on the front lines seeing these patients, she said. “So, you need to worry about STIs and pregnancy prevention.”
Susan Bernstein is a freelance medical journalist based in Atlanta.
