Tips for Exploring Tough Topics with Teens with Rheumatic Disease

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ATLANTA—Managing teenage patients may present challenges for pediatric rheumatologists and rheumatology professionals not only because of their often complex, rare conditions, but because teenagers are, well, teenagers.

Teens may experiment with sexual intercourse, alcohol use, tobacco or vaping e-cigarettes to fit in with their peers, even if these habits have serious health consequences, according to two pediatric rheuma­tology providers who offered tips for building trusting relationships and addressing awkward topics with teenage patients at a session on Nov. 13 at the 2019 ACR/ARP Annual Meeting.

“Our teenage patients challenge us in ways we can’t even imagine,” said Beth Gottlieb, MD, MS, director of pediatric rheumatology, Cohen Children’s Medical Center, Queens, N.Y. “When we diagnose a child who’s very young, we see them for a long time, and they grow up. They change. We sometimes forget that.”

Teens May Hide Behaviors

Teens with rheumatic diseases may have symptoms that are not obvious to peers or teachers, who may not be sympathetic or understanding. They struggle to deal with taking daily medications or having regular infusions, as well as years of medical appointments and blood tests. Corticosteroids and other medications may cause weight gain. All of these factors may negatively affect adolescent patients’ self-image or mental health, said Dr. Gottlieb.

Teens may also hide risky behaviors from their physicians. “Teenagers aren’t always truthful,” she said. “They’re liars. We all know it. We ask them, ‘Are you taking your medications?’ Bad question to ask, because that already imposes a little bit of judgment. A better way to word this is, ‘How many doses of medication do you miss in a week?’ Or if it’s a weekly medicine, ‘How many do you miss in a month?’ It leaves the conversation open, and it’s less judgmental, so they’re not as afraid to tell us. Try to engage them in a way that doesn’t sound scolding. As we gain trust with them, confidentiality will come, and that’s a very important factor.”

Pediatric rheumatologists may see their patients when they are quickly changing and maturing. Re-educate your patients about their disease, its symptoms and potential complications, such as uveitis, and the importance of being compliant with their medications even if you discussed these topics when they were younger.

Alcohol Use May Start Early

Teenagers may be curious about what will happen if they skip doses of their medication or drink alcohol along with their medicine even if their rheumatologist tells them not to try it, Dr. Gottlieb said.

“I think we overestimate the age at which alcohol becomes an issue for our patients,” said Dr. Gottlieb, adding that she has treated patients in middle school who tell her that if they cannot drink alcohol while taking their medication, it is a “deal breaker,” and they want to use a different drug. “We need to talk about drinking early, because you never know when this is going to be an important issue to discuss. Alcohol is there. We need to recognize that it could be a factor.”

Talk openly with teens about the specific ways that drinking could affect their illness, such as flare risk, or how alcohol interacts with methotrexate, leflunomide and cyclosporine. Repeat this discussion at each office visit, because teens forget these conversations or may want to impress new peers, she said.

“I had one teenage patient who thought they could outsmart the system by moving their methotrexate to Sunday and drink on Saturday night. Didn’t work! I found out when I tested their liver enzymes. Education is really important,” said Dr. Gottlieb.

Vaping: A New Risk

Nicotine is strongly addictive, but teens may be unaware of its risks, she said. In a 2018 study of 44,482 students at both public and private high schools conducted by the National Institute on Drug Abuse, 37% of seniors reported vaping, an increase from 28% the previous year.¹ Dr. Gottlieb also shared images of e-cigarette advertising that used cartoons to market the devices and fruity flavorings that may appeal to children. Deadly lung injuries from e-cigarette use, typically occurring when users put cartridges that contain tetra­hydrocannabinol (THC), the active substance in marijuana, in their devices, surged in 2019.²

“We need to share the information we have about nicotine with our teen patients. Nicotine can affect brain development. Nicotine harms areas of the brain that work on control, attention, learning, mood and impulse. It changes how the brain forms synapses regarding new skills. It’s really important to tell teenagers who are really interested in excelling in school about the effects of smoking, so they can make better decisions,” she said.

Let’s Talk About Sex

Discuss sexual behaviors with teenage patients sooner rather than later, said Dr. Gottlieb. A study has revealed 42% of girls and 44% of boys between 15 and 19 have had intercourse.³ Thus, healthcare providers should talk about contraception and the prevention of sexually transmitted infections with patients as young as 12.

Pediatric rheumatologists should also be aware of the high levels of victimization and bullying that teens who are lesbian, gay, bisexual, transgender or queer may face at school and in peer groups. “Ask your patients how they are managing. Realize that many of these kids mistrust healthcare professionals. Use gender-neutral terms and avoid assumptions about their sexuality or gender,” she said.

Kate’s Story: Binge Drinking, Anxiety

Ms. Pagano

Eileen Pagano, MS, CPNP, a pediatric rheumatology nurse practitioner at Cohen’s Children Medical Center, shared the story of her patient, “Kate,” who was diagnosed with oligoarticular juvenile idiopathic arthritis at age 2 and uveitis in both eyes a year later. Kate’s therapy included joint injections, methotrexate and eye drops, and she developed persistent sleep problems. Between 8 and 14, she had regular infliximab infusions.

“As she grew up, developed and began menstruating, Kate had a surge of hormones that fueled all these behaviors that Dr. Gottlieb discussed, and this went on for about two to three years. It was a tricky time for her,” said Ms. Pagano. “She had a lot of difficulty sleeping, and she began displaying aggressive behavior at home toward her parents and her siblings.”

At 14, Kate was diagnosed with oppositional defiant disorder, and her rheumatology care team discontinued infliximab because of concerns about its potential cognitive side effects, said Ms. Pagano. At 15, Kate started intravenous abatacept treatment at home through a home health service, which controlled her disease but caused mouth sores. At 16, Kate’s cousin committed suicide, which disturbed the teenager, and she experienced an iritis flare. Kate’s methotrexate dose was increased, but by 16, she began missing doses and began binge drinking. She began vaping nicotine daily at 17, and continued abatacept infusions once she started college at 18. Kate had an abortion at 19, and later withdrew from school and quit taking all of her medications. Her arthritis flared. Now 22, Kate has stabilized her mental health with counseling, and after working two jobs to pay for her tuition, is now thriving at a new college.

“Kate was drinking at an early age and binge drinking often, although it was contraindicated with her methotrexate. Look at the reason for the child’s drinking. Kate chose alcohol because it was an effective anti-anxiety agent,” said Ms. Pagano. A regular exercise routine and counseling helped this patient deal with stress and improve her sleep over time.

“Establishing a rapport with your kids very early on so that you can take them through their adolescence is the most important advice. You’re not their parent, you’re not their friend, but make it clear that they can talk to you and that they can trust you,” she said. 

Susan Bernstein is a freelance journalist based in Atlanta.

References

1. Monitoring the future: 2018 study results. National Institute on Drug Abuse, National Institutes of Health..
2. Kann L, McManus T, Harris WA, et al. Youth risk behavior surveillance—United States, 2017. MMWR Surveill Summ. 2018 Jun 15;67(8):1–114.
3. Abma JC, Martinez GM. Sexual activity and contraceptive use among teenagers in the United States: 2011–2015. Natl Health Stat Report. 2017 Jun 22;(104):1–23.