Caregivers worry about impact of severe acne on teens

More than 90% of parents of teenagers with severe acne who participated in a recent survey sponsored by Sun Pharmaceuticals Industries in collaboration with the American Acne and Rosacea Society (AARS) said they were “very worried” about the harmful impact of the skin disease on their adolescent’s physical, mental, and social wellness.1 They also shared concerns about effects on their entire family, and lifelong physical scars.

The catalyst for the online survey, which was conducted October 29 through November 5, 2020, by Regina Corso Consulting from Sun Pharma, the AARS, and Hilary Baldwin, MD. “As dermatologists, we know [what our patients go through], but we never took a collective look into how that impacted their parents,” Baldwin told Dermatology Times® and Contemporary Pediatrics®.

More than 90% of parents of teenagers with severe acne who participated in a recent survey sponsored by Sun Pharmaceuticals Industries in collaboration with the American Acne and Rosacea Society (AARS) said they were “very worried” about the harmful impact of the skin disease on their adolescent’s physical, mental, and social wellness.1 They also shared concerns about effects on their entire family, and lifelong physical scars.

The catalyst for the online survey, which was conducted October 29 through November 5, 2020, by Regina Corso Consulting from Sun Pharma, the AARS, and Hilary Baldwin, MD. “As dermatologists, we know [what our patients go through], but we never took a collective look into how that impacted their parents,” Baldwin told Dermatology Times® and Contemporary Pediatrics®.

Hilary Baldwin, MD

“Kids don’t live in a bubble, and their parents are dealing with them every single day and [going through it] right alongside them,” said Baldwin, medical director of the Acne Treatment and Research Center in Brooklyn, New York, and past president of the AARS. “So, with this survey we wanted to make sure to better understand how parents are feeling about the what their teenage children with severe acne are going through.”

Survey questions were informed by what Baldwin and colleagues hear in their practices, such as teens wanting to come home from school due to being bullied, not wanting to have their pictures taken, or quitting the sports they loved because the physical contact with other players would result in the nodules on their chest or their back popping and dripping blood onto their uniforms. Wrestlers and swimmers told Baldwin about dropping out of programs because of embarrassment when taking off their shirts. This sometimes led to college scholarships being deferred or lost.

“These are big picture changes,” she said. “Parents are suffering, some perhaps as much as their children, and it's time for people to recognize that.”

Although there were not many surprises for Baldwin among survey respondents (n = 250), she was interested to see that 55% of parents delaying visits to the dermatologist and starting more aggressive medication earlier. The message needs to get out that early effective therapy is paramount to a successful outcome, Baldwin said. One finding showed that 23% to 26% of parents allowed their adolescents with severe acne to use OTC medications exclusively and that 8% were not giving their adolescents any medication.

“Many people think OTC medications are good enough for severe acne. Once those products fail, parents are likely to turn to a dermatologist,” Baldwin said. “The biggest hurdle is not about seeking care, but about seeking appropriate care. Some parents fight the use of effective medications. They want natural products, but those products are just not going to cut the mustard with nodular or cystic acne.”

She advised working with parents to allow their teenagers to use medications they prefer for “a bit of time,” but advised patients and their families that these products may not achieve optimal outcomes. “Preplan every step,” she said. “Think about how those parents make decisions. Are they hands off? Helicopter parents? Did they drag their kids in kicking and screaming or did the teens instigate the office visit? Just keep in mind [that] you have to move fast. The longer it takes to get people on good aggressive therapy, the more likely they are to have physical and psychological scars.”

Adherence is another issue, “most often non-compliance is based on forgetfulness,” Baldwin noted, however, there sometimes is a control issue between parents wanting their child to take a medication and the child feeling pressured and, in turn, not adhering.

In some instances, nonadherence may stem from adverse effects of stronger medications. “We have many new toys that are an improvement over the choices that we had before,” Baldwin said. “New formulations for topical and oral medications as well as new active ingredients have resulted in improved tolerability.”

“At each visit, noncompliant behavior should be evaluated, but it is important for providers and parents not to be accusatory. The script needs to be about acknowledging that teens forget, they get tired, they don’t want to get up early, they don’t like the smell or taste of the medicine, or maybe they’re having adverse effects,” Baldwin said. “Then discuss ways to improve that.”

Based on first-hand experience with her own adolescents who had severe acne, Baldwin recommended associating taking the medication with a certain everyday activity. “My kids probably would not be at all happy if they heard me share this, but I taped the tube of medication to the refrigerator door handle,” she said. “The first thing my kids did when they came home from school was make a beeline for the refrigerator, and the rule was they didn’t open the refrigerator door until they applied their medicine. Put the medication between the salt and pepper shakers on the table or close to their toothbrush. Throw samples into their gym bags or jacket pockets—whatever improves their ability to remember to use it.”

To get adolescent patients and their parents on the same page, Baldwin recommended that ideally dermatologists allow 30 minutes to 1 hour for a new acne visit. “Talk about what acne is, why they have it, when it's going to get better or worse, what medications we have in general, what we're going to use for them, anticipated side effects and expectations for improvement,” she said.

She stressed the importance of matching the treatment plan to the patient’s preferences and lifestyle. “We need to learn a lot about our patients in that first visit, starting off with how much the acne bothers them. I ask on a scale of 1 to 10—1 being, ‘What acne?’ and 10 being, ‘Get this stuff off my face now’ just to find out what they’re going to be willing to do,” she said. “Somebody who's at 10 will do everything I ask them to do, I could throw 6 medications at them, and they'll use all 6, whereas somebody who's down at a 2 will not use anything.”

Other pertinent questions include whether the patient is a morning or an evening person, how frantic their mornings are, whether the gear they wear for sports has head straps, chin straps, or items that rub on their shoulders, what time they get home, and when they shower.

Although discussing the emotional and quality-of-life impact of this skin disease is vital, Baldwin advised postponing that discussion. “At the initial visit, the teenager doesn’t know me from Adam and doesn’t trust me. It’s not a time that he or she is likely to open up,” she said.

On the second or third visit, she suggested an open-ended statement such as, “This [severe acne] must make you very angry.” She cautioned against pushing adolescent patients to share their feelings if they are unwilling. “It’s often helpful to ask the parent to leave the room, especially with male teenaged patients,” she said. “Try to schedule a time, maybe via telehealth, to have a separate one-on-one with the parent to let them unload.”

Open-ended questions about how patients are dealing with acne or whether they’re being bullied can ease the conversation. “Dermatologists don’t have much time with each patient,” Baldwin said. “But we need to take the time to ask questions and listen to answers from teen patients with severe acne or their parents.”

Baldwin also advised having a trained therapist for referrals, “Sometimes the floodgates open, and I don’t have the time or expertise to close them,” she said. “Patients frequently decline to see a therapist because of their perceived stigma about ‘being crazy’. I explain to them that they’re going through an extremely hard time and the referral is just to give them someone to talk to.”

The survey found that 78% of parent respondents felt they were having deep conversations with their adolescents about the emotional aspect of acne. That wasn’t her experience, according to Baldwin.

“I have twin daughters, both of whom had acne, both of whom ultimately needed isotretinoin, and what I learned was that knowing when to speak and what to say was really difficult,” she said. “No matter what I said, it was the wrong thing and resulted in an argument. Often this occurred at breakfast, and they left for school on a bad note. I learned to say nothing—which was not easy. I learned to talk to them about their acne in a calm, quiet moment, perhaps on the weekend when nobody was mad at anyone.”

“Another lesson was to talk to them about their acne in a calm, quiet moment, perhaps on the weekend when nobody was mad at anyone,” Baldwin said. “It also helped to have little snippets of conversation, to just sort of drop a comment [such as], ‘Are you happy with your medications? Is there anything I can do to change them?’ I tried not to insert my experience as a teenager into the conversation as they didn’t appreciate me telling them how I handled acne at their age. I ended up telling them, ‘Talk to me if you want to or I’ll help you find someone else to talk to. You know I’m here and I’ll do whatever it takes.’ Then leave it alone.”

This article was originally published by Dermatology Times.

Disclosure

Baldwin is a paid consultant for Sun Pharma.

References

1. Parents are very worried about the effects of severe acne on their teenage children as reported in a new survey. Sun Pharmaceuticals in collaboration with the American Acne and Rosacea Society. News release. Sun Pharma. April 7, 2021. Accessed May 13, 2021. https://www.sunpharmaderm.com/pdf/Sun_Pharma_Acne_Survey_Press_Release.pdf

2. Parents: Your teen’s severe acne affects the whole family. Sun Pharma. Accessed May 11, 2021. https://www.sunpharmaderm.com/pdf/Sun_Pharma_Acne_Survey_Infographic.pdf