Q: What could possibly be bad about children with neuromuscular diseases living longer life spans than has been common in the past?
A: As these children become adolescents and then adults, they encounter a medical system and society that are not prepared to accommodate them.
As a means of helping these adolescents prepare for the future, the MDA Transitional Services Task Force in August launched the pilot distribution of a new workbook to help adolescents with neuromuscular disease navigate a path to independent adulthood.
MDA clinicians in 14 test clinics now are using and evaluating the transition tool, called “The Road Map to Independence.” At the end of the six-month trial, the Task Force plans to incorporate feedback into a final version before distributing the Road Map to all clinics MDA-wide.
The guide consists of a series of age-appropriate questions, with one version geared toward parents/guardians, and the other toward young adults ages 13-18. The questions cover such areas as health and education, understanding the disease, relationships and planning for after high school.
Various members of the child’s health care clinic team conduct the interviews, which take place annually.
For example, questions for adolescents include:
Have you learned how to drive, or do you know how to use local transportation services to get around the community?
What are you doing to help yourself stay healthy?
Questions for parents include:
What is your child’s diagnosis? How do you explain it to him/her, other family members and friends?
Has a cardiologist (a doctor who specializes in the heart) spoken with you about your child’s heart?
The answers to these questions help physicians gauge “where the family stands with regard to various aspects of the child’s development,” says MDA Director of Clinical Programs Jodi Wolff. The interview process helps families learn about available resources and serves as “a vehicle to help families start thinking about their teenager’s adult life and making that life as independent as possible.”
“The first feedback has been very positive,” says neurologist Michael Shy, co-director of the adult MDA Clinic at WSU Physician Group at Harper University in Detroit.
People have said the questions are important ones that they haven’t been asked before, Shy says. “Nobody’s been negative.”
Marie Ritzo, a clinical social worker at the MDA Clinic at Children’s National Medical Center in Washington, D.C., developed the first draft of the Road Map as a means of “encouraging our young patients to realistically think about their medical condition and help them make decisions that they felt were appropriate to them.”
Medicine and technology have improved dramatically over the last decade, says Ritzo, meaning more and more youngsters with neuromuscular diseases are “living into adulthood, attending college, getting degrees and then moving into workplaces. We needed something that would help with the transition from pediatric care to adult medicine and the transition from childhood to adulthood and independence.”
A team of physicians, other medical professionals and adults with muscle diseases, headed by MDA Vice President for Advocacy Annie Kennedy, fine-tuned the transition tool to make it as effective as possible.
A sign of progress
In addition to the guidance the Road Map provides individuals, families and health care team members, the document also reflects advancement in the study of neuromuscular diseases.
“The Road Map is emblematic, in that it demonstrates the progress [that’s been made] in the care of MD,” Ritzo says. “The progress has been steady and solid enough that living into adulthood, contributing to society, and having a chance at adult relationships of all sorts are no longer experiences that are absolutely denied.”
Shy echoes Ritzo’s thoughts. “I think families should be excited because of the recognition that kids are living longer and that they have options that didn’t used to be available,” he explains. “The Road Map helps channel them to those opportunities — exactly what MDA has been about for so long.”