There’s no escaping the fact: Adolescents and teens with rheumatic disorders see pediatric rheumatologists more than any other kind of doctor, which leaves the onus on these specialists to manage difficult risky behavior among their young patients. Besides, the parents expect as much, according to a 2000 study published in the Archives of Pediatrics.
It's an uneasy assignment, according to the same study. At a session devoted to this topic today at the American College of Rheumatology meeting, adolescent medicine specialists offered insights and tips for rheumatologists on addressing issues such as smoking, substance abuse, and sex among those rheumatology patients at greatest risk for complications from such behaviors.
Don’t forget to take the possibility of risky behaviors into account when treating adolescents and teens with rheumatic disorders, advised Frank M. Biro, MD, professor of clinical pediatrics in the division of adolescent medicine at Cincinnati Children’s Hospital.
• Studies show that “acting out” behaviors such as tobacco and alcohol(Drug information on alcohol) use as well as early sexual activity are increased among adolescents with chronic diseases, especially those that are invisible. (A recent study cited by a later speaker has found that teen girls with arthritis or rheumatism are among the young patients with chronic disease most seriously affected by loss of self esteem.)
• These behaviors are especially risky for such young patients. Alcohol use increases hepatotoxicity from medications; smoking increases the risk of cardiovascular disease for teens with lupus and pregnancy in lupus confers special risks on both mother and fetus.
• Remember to take rapid changes in body composition and other changes of puberty into account when assessing disease status and laboratory values. Recent research published in Pediatricsshows that the age of onset of puberty continues to decline.
Issues of sexuality and contraception are urgently important for teen girls with rheumatic diseases, as they impact the disorder and vice versa. But there are acceptable ways to manage them, said Susan Paige Hertweck, MD, pediatric gynecologist at the University of Louisville’s Kosair Children’s Hospital.
• Child-bearing is possible but risky for girls with lupus, and for teenagers “contraception is almost mandatory.” Fertility rates are normal with lupus, but the increased risk of ischemic heart disease and stroke complicate contraception, as does the fact that many lupus medications are teratogens. The “big contraindication” among contraceptives is that pills, patches, and rings are risky for patients positive for antiphospholipid antibodies, Hertwick said. Otherwise, “you’re fairly safe with most methods of contraception,” but for teenagers the long-acting reversible contraceptives (LARCs) such as IUDs are probably preferable. A large study of LARCs reported recently in the New England Journal of Medicine has documented their effectiveness, she added, and “we no longer see reports in the literature” about a link with pelvic inflammatory diseases. A 2005 study of contraceptives among lupus patients, also published in NEJM, showed that the copper IUD was not associated with an increase in flares or infection.
• Consider an advance prescription for the “morning-after pill” levonorgestrel(Drug information on levonorgestrel) as a “security blanket” for girls with lupus who are younger than 17 and cannot legally buy it over the counter. Studies show that it is not associated with thrombosis, Hertweck said, and the latest basic science research has established that it does not act as an abortifacent.
• Use the menstrual cycle as a vital sign. A study of menarche among 30 girls with SLE found that they begin menstruating later than healthy girls and their cycle length is longer than average. “What’s happened with periods can be a good indicator of disease status,” she said: The cycle should fluctuate between 21 and about 45 days in the first year after menarche, and any cycle longer than 3 months should be a red flag for high disease activity, cumulative organ damage, or pregnancy, as well as considering referral to assess other possibilities: polycystic ovarian syndrome, thyroid abnormalities, or primary ovarian insufficiency.
• Consider adding screens for STDs to your routine urine testing for young women with rheumatic diseases. As women aged 15-24 account for nearly half of all sexually transmitted infections, and as rheumatologists are on the front line of their care, it’s up to the specialists to undertake this aspect of primary care.
• Consider using a pre-visit screening questionnaire to ask teen patients discreetly about matters such as sexual activity, sexual preferences, and use of alcohol, tobacco, and other substances. An Adolescent Visit Questionnaire created by the American College of Obstetricians and Gynecologists is widely available online.
Understand the emotional and cognitive stages of adolescent development and try to use them to advantage in encouraging young patients to begin managing their own situation, said Margaret Blythe, MD, professor of pediatrics and clinical gynecology at Indiana University School of Medicine.
• Early adolescents (11-13) are involved in themselves and interested in self-expression. Can you encourage the patient to track symptoms and feelings about them in a diary or on a phone?
• The middle years of teenagerhood (14-17) include not only the changes of puberty but tremendous changes in cognition and intelligence. This is the time to devote more attention to the teen than to the parents. At this age, patients should be knowledgeable about their own disease and their medications, and should probably be getting their own refills.
• The transition from teen years to early adulthood are times of increasing self-understanding and of negotiating independence. A productive conversation about alcohol or smoking will focus on the patient’s “vision of himself as a healthy person,” said Blythe, and will challenge patients to rethink what they really intend to risk, given the reality of the challenges facing them.
She listed these daunting challenges: (1) reduced independence due to limitations in mobility and the demands of medical management; (2) threats to a positive body image from delayed puberty and restrictions in exercise; all of which leads to (3) peer-relations issues that may result in exclusion and even harassment, and ultimately (4) challenges to a healthy identity because of limited achievements.
But given a chance, children and teens are very capable of getting their families and themselves to manage their environment, said keynote speaker Logan Graham earlier the same day. Graham grew up with juvenile idiopathic arthritis, and went on to found the Childrens Arthritis Foundation.
Also from ACR2012:
Missed Lung Disease in Community-Treated Systemic JIA Often Fatal
“Magic Bullet” Approaching for Systemic JIA: But Which One?
Briefer Two-Drug Regimen Offers Dramatic Results in Lupus Case Series
Good News About Belimumab and SLE