Little about the growing-up experience is easy for children or parents. If you’re a young adult with a bleeding disorder, the transition from relying on parents to manage your care to sudden—and required—self-reliance is just another step in a dizzying sequence of life-changing events.
“Change is hard,” says Stacy Croteau, MD, MMS, instructor of pediatrics at Harvard Medical School. She is also associate director of the Boston Hemophilia Center, where she sees patients who range in age from infancy to their mid-20s. “When young adults have the option of continuing to do what they have done since childhood or transferring care to a new clinic with new providers, it isn’t surprising they usually choose to stick with what is working for them and confront change only when they have to.”
Still, change is inevitable. “When my son was 15, I realized he had never ordered his own factor. I teach on this topic, yet my own kid was not doing it,” says Dawn Rotellini, senior vice president of chapter development and education at the National Hemophilia Foundation (NHF). She is also a member of NHF’s Transition Committee. Her son, Gino, now 18, has moderate hemophilia A.
Managing this transition to self-care is best done slowly, in stages. Even if out-of-state college is months away, there are several steps to help you feel comfortable caring for your condition on your own.
Step by step
The transition to adult treatment is a big step, but it’s not the first. Ideally, your care journey is marked by small successes. Rungs in the ladder may include helping set up your infusion equipment when you were a toddler, self-infusing in middle school and donning your MedicAlert® bracelet in high school.
Several programs and resources help families chart the course to independence. NHF’s Steps for Living website provides advice and resources for all life stages, from childhood to adolescence and adulthood. Another resource is the HEMO-milestones Tool, a standardized evaluation of a patient’s self-care skills. It assesses the patient from birth, when parents manage care, through adolescence, when the teen assumes more responsibility for care and treatment. By recognizing significant accomplishments, such as self-infusion skills, medical knowledge and the ability to communicate with healthcare professionals, the tools can help instill confidence and competency in young adults.
“The HEMO-milestones Tool helps us understand where on that path to medical independence patients and their parents are,” says Croteau, who helped create it. “We can support their skill level and help them progress to the next step.”
Community programs and activities are other valuable resources, says Rotellini. Conferences and fundraising events provide a safe place to meet peers living with the same or similar bleeding disorders, to ask questions and even to pick up a few tips. “Kids and families who attend chapter activities get a lot of education,” Rotellini says. “They’re exposed to other kids with bleeding disorders and can watch how they behave.”
For many adolescents and teens, summer camp is the first time they’re put in charge of their own care. Sleep-away camps encourage and celebrate self-infusing, with tangible rewards like certificates and prizes. In addition, older counselors serve as role models and mentors to the kids in their cabins.
To better understand where you fall on your quest for independence, take the American Society of Hematology’s (ASH’s) General Hematology Transition Readiness Assessment Template. Patients rate themselves on 22 statements across five categories. Statements include: “I can fill out a medical history form,” “I understand my insurance plan” and “I know what to do in case of a medical emergency.” (See sidebar, “Test Yourself.”)
Consider the tool a snapshot of where you are today. Let it show you where you need to get answers and focus your efforts. Discuss the assessment with your parents, your hemophilia treatment center (HTC) care team and your primary care physician.
Talk about it
Croteau has found that patients with severe bleeding disorders are extremely knowledgeable about their own conditions and treatment, more so than her patients with moderate forms. However, most of the young people she works with struggle with the communication part of the puzzle. You can start practicing communication skills in high school. That’s a good time to begin making your own doctor’s appointments and ordering your own supplies.
Sit down together with your family to review insurance paperwork and billing. Start with the basics, such as defining terms like deductible, copayment and formulary. Ask questions.
If you’re heading to a college away from home, discuss insurance coverage, and how to order factor and have it delivered. Locate the HTC and hospital closest to your college campus. Add them as contacts in your phone.
Find your motivation
You may benefit from having an incentive. For Gino, who had been putting off practicing his self-infusion skills, it was a high school band trip. “I told him, ‘I’m not going to be there to infuse you. If you can’t take care of your own bleeding disorder, you can’t go on this trip,’” his mom says. That’s all the motivation Gino needed. Now he’s in college and self-infuses.
Travel was also the impetus for Nikole Scappe, of Coraopolis, Pennsylvania, to take her self-care skills to the next level. A member of NHF’s Board of Directors and the 2015 recipient of NHF’s Ryan White Award, the 25-year-old college student has been handling her own treatment for von Willebrand disease since she was 18. Still, while planning a trip to Italy last year, she discovered an even greater level of comfort with her treatment plan. Scappe tapped into the multitude of resources available. A member of an online women’s group for bleeding disorders had recently helped her daughter plan a similar trip and offered plenty of advice. Scappe also reached out to her HTC. “The social worker shared a lot of research with me,” she says. “She helped me put all the information in my travel letter.”
Whatever your motivation, use the resources available to you at your HTC and in the community to prepare to reach your next goal.