When children have lupus, they hurt. And when a child hurts, parents hurt, too. Read on for tips on supporting your child with lupus.
Growing Up: Teens, young adults must learn to manage lupus on their own
By Jenny Thorn Palter
Elizabeth Yuen, 18, was diagnosed with lupus at age nine—and her goal is to one day become a pediatric rheumatologist. “I know what the kids will be going through because I’ve been through it myself,” says the sophomore at San Francisco State University who won a Presidential Scholarship that pays for her schooling. “I want to be able to give back.”
Yuen spent the summer working at the National Institutes of Health in Bethesda, MD, as part of a prestigious two-month science internship. But her body was unaccustomed to the heat and humidity common in the Washington, DC, area, and she developed a severe bladder infection due to dehydration.
Her supervisor noticed that she was fatigued and had a rash on her face. Mindful of how lupus can flare unexpectedly, he immediately arranged for Yuen to have blood tests and scheduled a doctor’s appointment to assess her condition. She was prescribed antibiotics and felt better within days.
Many young adults are not so lucky—and like Yuen, often don’t realize they’re in distress. They’ve spent their childhoods largely being taken care of by mom and dad, and by the pediatric health care system, and the transition to caring for themselves as adults is challenging.
Preparation Is Key
“Transition to self care is a process that takes years to complete, before and after the actual transfer from the pediatric clinic to an adult health care setting,” says Peter Chira, M.D., M.S., who cares for young people with lupus and other rheumatic diseases at Riley Hospital for Children in Indianapolis, part of the Indiana University School of Medicine system. “Young adults with lupus need to become the quarterback of their health care team, but we, as health care providers and parents, have to get them to that role.”
The key, Chira believes, lies within. “They need self-knowledge, self-awareness, an understanding of the context of how lupus affects them on a day-to-day level,” he says. “So we have to ask ourselves, ‘How do we get these young adults to understand the importance and take responsibility for their health care, to develop their voice, and to understand their lives in reference to their lupus?’”
Most pediatric specialists agree that young people with chronic illnesses should begin learning about caring for their own health as early as 13 years of age.
Why that age? “Attention to the process early is important to begin to prepare children and their parents for the changes that are coming up,” says Lori Tucker, M.D., associate professor in pediatrics in the Division of Rheumatology at British Columbia Children’s Hospital in Vancouver, Canada. “The main issue is that no one will chase them if they are noncompliant. That’s a big change for them.”
That means that parents have to allow their children to help manage their conditions. “We encourage families to gradually allow the child to have a more prominent role in their own care,” says Kate Coffee, R.N.-B.C., a nurse clinician who works with children and teens with lupus at Seattle Children’s Hospital in Seattle, WA.
Tucker agrees. “The parents who are compliant with their child’s care while in our pediatric center do much better in helping their adult child make the transition to self care,” she says. “Most parents are really pretty good at working with their teen to teach them how to take more responsibility for their health.”
Elizabeth Yuen’s mother, Nancy Yuen, has taken the proactive approach from the start. “Ever since Elizabeth was diagnosed with lupus, I made her write down her questions to ask when she saw her doctor,” she says. “I still have her notebook with the concerns that were important to her: ‘Can I still go to the slumber party?’ and ‘Am I going to die?’ By the time she was 12, she had her own pillbox, and she could fill it and remember to take the medications.” Her guidance, and Elizabeth’s compliance, may not be typical. But emphasizing the importance of self care is the best decision a parent can make for a child with a chronic illness.
By middle school, children can make rational decisions and judgments, experts say. That makes this a good time for parents to start discussing how to live well with lupus. When the child is ready, parents can ask doctors to speak to the child directly, rather than through the parents. Parents and physicians can help children understand their disease and how to ask for what they need, which can help the child not feel powerless against lupus.
“A definite concern is how young people whose cognitive abilities are compromised by lupus will be able to manage their ongoing health care needs, especially without the supportive community environment found in pediatric health care,” Coffee notes.
Difficulties with thinking and comprehension are not uncommon, making adherence to prescribed therapies essential. “Involvement of the brain and nervous system is common in children and teenagers with lupus, causing severe physical complications, such as strokes and seizures, as well as changes in mood and in cognition,” explains Eyal Muscal, M.D., M.S., assistant professor of pediatrics in the divisions of Rheumatology and Neurology and Developmental Neuroscience at Texas Children’s Hospital/Baylor College of Medicine. “These symptoms of neuropsychiatric lupus can create cognitive shortfalls, which in turn can lead to academic difficulties and noncompliance with medical care due to mood disorders.”
Muscal, an LFA grantee for his research on lupus and the brain, says that few studies have been done on the challenges and barriers posed to young adults with cognitive complications who are in the transition process. But at least one study of adults who had childhood lupus showed that participants had difficulties attaining educational milestones. “Research done in other disorders, such as sickle cell disease, has shown that identifying and managing cognitive and emotional issues are integral for a successful transition process,” Muscal says. “Similar models may need to be implemented in pediatric lupus clinics.”
Tools for Success
The transition to self care can be made smoother by advance planning. Tucker says that a transition checklist is something that many pediatric centers are starting to study and use. “These tools may be helpful ways to educate teens and their parents about the tasks that they will need to be able to master to be successful in adult health care,” she says.
At the lupus clinic at Duke University Hospital in Durham, NC, a transition binder helps young adults understand what they will need to know about being in charge of their health. Developed by Shelia Rittgers, a social worker in the Duke Children’s Hospital & Health Center, and pediatric rheumatologist Stacy Ardoin, M.D., now at Ohio State University in Columbus, the binder contains the patient’s medical history and a section on understanding lupus. Also included is information about the importance of family planning, seeing adult providers, and making the most of each visit. In addition, it discusses possible accommodations for college and the workplace, health insurance coverage during and after college, and the importance of being your own best advocate.
Emily von Scheven, M.D., M.A.S., professor of clinical pediatrics at the University of California, San Francisco, is testing the Lupus Health Passport with her teen patients, including Yuen, who takes hers wherever she goes. A pocket-sized notebook originally created for adults with lupus, the Passport was restructured for use by teens and young adults. It includes a checklist for transition readiness and can help with scheduling physician visits and tracking symptoms, medications, and lab results.
“Children and adolescents with lupus face a lifetime of chronic disease,” von Scheven says. “In order for them to have the best outcomes and quality of life, they need to be well-prepared for managing their disease as they move into adulthood.”
Some pediatric rheumatologists admit they worry most about their “kids” with lupus. “In some ways, they can be more disabled, because with lupus, there will be more health issues,” says Chira. “A lot of them are going to be at higher risk of not having health insurance and routine health care, so the transition to self care ends up being an issue of socioeconomics as well.”
Chira says that one of the biggest discrepancies is with young adults seeing—or, more likely, not seeing—a rheumatologist while at college. “In an adult health care setting, it’s up to the patient in terms of organizing and coordinating,” he says. “We know that nonadherence and noncompliance are a part of adolescence. That’s why we try to instill the concept of ‘fail safely.’ But having a safety net is always difficult—especially when adult providers are not familiar with health care of adolescents. And a lot of health care centers don’t have resources for young adults.”
Steven Breidenich of Independence, KY, has the same concern about his 18-year-old daughter, Susan, who was diagnosed with lupus a decade ago. “Discipline in taking meds, seeing the doctor, recognizing symptoms—taking responsibility for one’s own care may be the hardest challenge for young adults,” he says.
Susan started attending Western Kentucky University in Bowling Green, KY, this fall, yet she had not made an appointment in advance with an adult-care rheumatologist. Her father’s Internet search turned up just three rheumatologists in Bowling Green. It can take months to get an appointment in areas where specialists are few and far between.
Even when a young adult has a new doctor, and he or she knows about lupus, the transition to self care is not easy for parents. “The hardest part,” acknowledges Breidenich, “is worrying about her handling a flare-up on her own, a long way from home. The fact that a flare-up is sudden and unpredictable in lupus adds to the stress.”
How to ensure that teens are prepared for the transition to adult care is a question with no simple answer, experts say. “I think what remains a challenge is how to continue to follow our young adult patients well but not create an expectation that an adult health care provider will call them about missing appointments or check in on them as a part of their routine care,” Coffee says.
It’s natural for parents to worry, but teaching a child responsibility early can make all the difference. “From the day of her diagnosis, I knew she was going to have lupus for the rest of her life,” Nancy Yuen explains. “Lupus can be dire. That’s why I needed her to learn how to be her own advocate.”
In spite of the demands of her college course load and her lifelong ballet training, Elizabeth Yuen co-founded a Peer Advisory Lupus Group at the University of California, San Francisco, as part of her involvement with the pediatric lupus clinic. “My advice to other young people with lupus is just to write everything down, and definitely in high school, talk to your pediatric rheumatologist,” she says. “Get into the practice of going in and talking to your doctors by yourself, be comfortable with having lupus, and get the care you need.”
Yuen also has a little hint for other young people with lupus: “Get to know the receptionists and their names,” she advises. “They’ll help you get an appointment sooner!”
For individuals with lupus, bone health may be a concern as medications can lead to bone loss. However, low bone mass density is often treatable.