Adolescent Idiopathic Scoliosis: Tackling the Compliance
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.
There are a number of approaches orthotists can take to help their patients overcome compliance obstacles.
“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.
Although AIS affects both boys and girls older than age 10, AIS is more than 10 times more common in girls than in boys, with an overall ratio of 11:1.
—American Academy of Orthopaedic Surgeons
“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 found- ing 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 [for] 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 remain- ing 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 under- stand more about how these kids are feeling and what they are going through.”
Developing a Doable Wear Schedule
Sitting down with the teen and family to develop a practical, individualized wearing schedule that ts 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 o 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. ere 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.curvygirlsscoliosis.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. TV channel TeenNick honored Stoltz with a HALO award in 2009 for her work in supporting and educating other young girls with scoliosis and their parents.
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. e store opens early for scoliosis patients and their families to help the teens and parents and the latest fashion trends that are compatible with the braces. is free event includes refreshments, style advice, a fashion show, and personal shop- per 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.”
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 t 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 Mom Launches Apparel Business
Having a supportive and encouraging family environment goes a long way toward helping teenagers be more compliant with 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 modi ed 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 com- pany that makes clothes for kids with scoliosis bracing. at question inspired the September 2012 launch of Hope’s ClosetTM (www.hopescloset.com). The company offers Hope’s EmbraceTM, a chic tank top made from a soft, light, breath- able fabric with ChitoSanté antimicrobial treatment. The tank comes 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’ Rasp- berry and Lime-Light Green, and sizes—mini, pint, fun, and super-fun—are the work of Schneider’s younger sister Bella, whom her mother describes as “a little marketing genius.”
Get the Curvy Girls book at Ability P&O
Straight Talk with the Curvy Girls, by Teresa Mulvaney and Robin Stoltz, LCSW, is a book that combines medical information on living with adolescent scoliosis with advice and anecdotes from girls with the condition. Ability P&O’s patient care facilities provide copies of this book as an educational and inspirational resource for adolescent scoliosis patients. For more information, contact your nearest Ability office location.