Adolescent Idiopathic Scoliosis: Helping Kids Meet the Compliance Challenge
April 2013 Issue
Being a teenager is stressful enough. Being a teenager who has to wear a scoliosis brace can be emotionally paralyzing. Peer acceptance isn't the only issue these kids face. Orthosis comfort, clothing issues, and the logistics associated with a wearing schedule in an already busy day all loom as obstacles to compliance. However, research studies reveal that for a high percentage of patients with adolescent idiopathic scoliosis (AIS), compliance with prescribed brace wearing schedules does indeed result in halting or slowing curve progression and avoiding surgery.
How can orthotists help their patients overcome these obstacles? To find answers that work, The O&P EDGE asked several orthotists with considerable experience in managing AIS to share their approaches.
Setting the Stage
"Orthosis design, fabrication, and fitting are critical components, but the perspective needs to be broader," says Luke Stikeleather, CO, co-owner of Orthotic Solutions, and president of its Scoliosis Solutions division, both headquartered in Fairfax, Virginia.
Fitting the head and heart of young patients is as important as fitting their bodies, Stikeleather points out. Good compliance begins when the patient and the parents "buy in" to the treatment program.
"I paint the whole big picture; I try to engage both parents and the patient in explaining everything about scoliosis that I think would help them," continues Stikeleather, who is also an associate fellow with the Scoliosis Research Society and founding member of the International Society on Spinal Orthopaedic and Rehabilitation Treatment (SOSORT). "Sometimes patients rely on parents to obtain information and don't realize the potential risks and complications if their conditions worsen."
"For us as orthotists and the whole treatment team, education is foremost," says Don Katz, CO, LO, FAAOP, vice president of facilities and process design at Texas Scottish Rite Hospital for Children (TSRHC), Dallas. Patients and parents need to be completely aware of the critical importance of meeting the physicians' prescribed wear regimen, he stresses. They need to understand the patient's curve type, that remaining growth presents a serious risk of the curve worsening, and that there is a limited time for orthotic intervention to effectively prevent surgery.
"However, the positive message is, 'This isn't forever; you only need the brace while you're still growing. If we can keep the curve where it is today with the brace, you shouldn't have any troubles with your spine for the rest of your life.'"
"Listen to mom and dad, but try to engage their son or daughter," advises James "Jim" Wynne, CPO, FAAOP, vice president and director of training and education at Boston Brace, headquartered in Avon, Massachusetts. "Treat them as young adults, talk with them to get a sense of who they are and what's important to them, ask about their interests. You might also say, "You're the one who's going to be wearing the brace; what do you think about it?"
Stikeleather agrees. "We as orthotists need to try to understand more about how these kids are feeling and what they are going through."
Developing a Do-able Wear Schedule
Sitting down with the teen and family to develop a practical, individualized wearing schedule that fits the patient's and family's circumstances is essential. For instance, John Berteletti, CO, National Orthotics and Prosthetics Company (NOPCO) of New Jersey, East Brunswick, strongly encourages kids to wear their braces at night and during school. He emphasizes keeping a consistent wear routine during the week and having a freer schedule for weekend activities. Berteletti eases patients into wearing the brace by following a limited schedule for the first week or so to build body tolerance and confidence before graduating to full-time wear and heading off to school.
Connecting with Peers
Teens with scoliosis usually share the same concerns as other kids their age about appearance, fashion, friendships, and fitting in with their peers. They often feel alone and like they are different from others. They are worried about how others will react to their brace. There are organizations and Internet resources that can help reduce feelings of isolation by connecting these teens with one another to share friendship, concerns, advice, and fashion tips. In fact, some of the most informative and helpful websites have been started by teens themselves.
The majority of experts interviewed for this article cited Curvy Girls (www.curvygirls
scoliosis.com) as being one of the most helpful peer-support organizations for teens with scoliosis. Launched in 2006 by scoliosis patient Leah Stoltz, then age 13, Curvy Girls has grown from being a meeting of four girls to a network of peer-led support groups throughout the United States and internationally, with groups in Canada, Australia, and Brazil. The TV program TeenNick honored Stoltz with a HALO award in 2009 for her work to support and educate other young girls with scoliosis and their parents.
A website created by Hannah Y (she does not provide her last name), a teenager in San Diego, California, provides tips about how to find and wear cute, stylish outfits that conceal the brace (scoliosisstories.webs.com). "You do not have to lose your inner fashionista just because of your brace," writes Hannah, who also has a fashion page on the Scoliosis Association of San Diego website (www.sdscoliosis.com). Because of her commitment to her brace wear schedule, her curve went from 36 degrees to 17. Now that she is fully grown, she reports that her physician believes she will remain at 17 degrees after discontinuing her brace.
To help increase brace wear compliance, several scoliosis orthosis providers have developed programs to help teens start peer networks. Boston Brace teams up with fashion retailer Nordstrom for a "Passion for Fashion" event each spring and fall. The store opens early for scoliosis patients and their families to help the teens and parents find the latest fashion trends that are compatible with the braces. This free event includes refreshments, style advice, a fashion show, and personal shopper assistance, with no obligation to buy.
"The event gives the young patients a chance to meet and interact with peers and exchange contact information," Wynne says. "The parents also get acquainted and talk. It has worked out really well."
Orthotic Solutions involves scoliosis patients in "Make-a-Brace" workshops. "The kids come into the lab with us, put gloves on, help put their chosen color on the plastic, and then watch us as we apply the plastic to their mold," Stikeleather says. "Being part of the team making their braces helps them to buy in to it."
Berteletti says that allowing girls to wear their brace over their jeans has had a huge impact on compliance. "Years ago, they needed practically a whole new wardrobe to fit over the brace and would buy pants that were three or four sizes bigger than normal," he says. "When the girls can wear the same clothes they've always worn, it makes a big difference...."
Innovative Moms Launch Apparel Businesses
Having a supportive and encouraging family environment goes a long way toward helping teenagers be more compliant in their brace wear. However, several parents have gone above and beyond with their involvement. Dahlia Ronen, for example, remembers when her daughter Hope Schneider was fitted with a modified Boston Brace during her seventh-grade year. The shirt that Schneider's orthotist gave her to wear under her brace was uncomfortable and unattractive. Her reaction was, "I'm not wearing that!" her mother recalls.
When they went shopping, "the results were disastrous," Ronen continues. Some T-shirts were too hot and sweaty, and others had such low-cut armholes that Schneider developed painful abrasions which prevented brace wear. Finding attractive tops to wear over the brace was a challenge as well. In many cases, the brace brackets wore through the fabric.
Schneider asked her mother why there wasn't a company that makes clothes for kids with scoliosis bracing. That question inspired the launch of Hope's Closet™ (www.hopescloset.com).Two friends joined Ronen as business partners. Limor Shoval, a designer with a background in textiles, is president and director of design and production; Simona Citron, MBA, CPA, is the chief financial officer and director of marketing and social media; and Ronen, a corporate attorney, is the company's chief executive officer and general counsel.
Launched in September 2012, the company offers Hope's Embrace™, a chic tank top made from a soft, light, breathable fabric with ChitoSanté antimicrobial treatment. The tanks come in two styles, Preppy Chic and Urban Chic, and two colors, pitch black and snow white, with a range of colors for contrasting stitching. Color names, such as Rockin' Raspberry and Lime-Light Green, and sizes-mini, pint, fun, and super-fun-are the work of Schneider's younger sister Bella, who her mother describes as "a little marketing genius."
The company's next line will include a tank with an underarm flap to fit Chêneau-type braces, an expanded range of colors, and chic shirts to wear over braces, Ronen says.
Scoliosis is a family matter for Tina Beauvais, since her husband, son, and daughter all have scoliosis. When her daughter Cynthia, then age six, was fitted with a SpineCor® orthosis, the little girl could not work the straps and buckles to remove the brace to use the restroom at school. The Michigan mom searched for solutions without success, so she created her own, now-patented, design: a comfortable bodysuit that fits under the entire brace, eliminates chafing and rubbing, and enables the brace wearer to use the restroom without removing the brace. The online company, EmBraced In Comfort (www.embracedincomfort.com), has expanded since its 2009 inception to include a range of short sleeve and sleeveless T-shirts, brace shorts, and bodysuits, including styles for boys and men.
Orthosis Design Aids Compliance
Advances in orthosis design and fabrication have also helped to provide better fitting, more comfortable braces. Berteletti says he is enthusiastic about digital scanning and a three-dimensional (3-D) CAD/CAM program that allows computerized modification in all three planes for a better fit before making the mold and fabricating the brace. "You can play around with the materials, make the liner a bit thinner, make the plastic a bit thinner," he says. "When you can control the materials, you can make it as thin as possible but still have the strength where you need it. You can get a more body-shaped mold rather than the boxy, modular-looking brace that you often see in scoliosis."
Giving kids the option to personalize their brace with attractive colors and patterns can promote better compliance. For instance, Boston Brace offers colorful transfers including a leopard print and a butterfly design against a blue background.
Stikeleather designs orthoses exclusively based on the Rigo-Chêneau principle. The Chêneau design aims for a 3-D correction of the curve, emphasizing the sagittal plane as well as the coronal and transverse planes. The Chêneau brace is defined as "a thermoplastic brace modeled on a hyper-corrected positive plaster mold of the patient," according to www.bracingscoliosis.com. "The general correction principle is that of detorsion and sagittal plane normalization, which would correct the coronal and transversal planes, resulting in some elongation of the spine without any significant distraction force." The design uses an anterior opening rather than a posterior one, which enables even young brace wearers to don and doff the brace without assistance, so they can go through their school day, sports, and other activities more easily.
Katz, too, favors some Chêneau principles, such as the anterior opening. One of the most important factors in compliance, he points out, is cosmetics. "That typically boils down to the sagittal plane cosmetics. If there's a cosmetic concern, it's generally agreed to reduce the sagittal plane shape, the lordosis. We try to maintain as much of [the patient's] natural shape as possible while being true to what is biomechanically necessary to reduce the size of the curve.
"We have a responsibility to design an orthosis to reduce the curve to a reasonable degree, but equally important is that it is also tolerable and as cosmetic as possible to help the patient be compliant with prescribed wear time," he stresses. "We make sure the brace is no larger than it has to be, no thicker than it has to be, and that trim lines are no longer than they have to be so the brace is less intrusive in their clothing."
Although having to wear a brace isn't fun, complying with prescribed wearing times is much easier than in the past. Aided by technological advances in fabrication, orthotists are finding creative solutions to make scoliosis braces as light, comfortable, and inconspicuous under clothing as possible while still accomplishing treatment goals. Stylish, comfortable options make it easier to feel attractive and on-trend while wearing a brace, and online resources and support groups help teens connect and share with others like them. As the Curvy Girls motto states, "We've got your back."
Miki Fairley is a freelance writer based in southwest Colorado. She can be contacted via e-mail at