By James Wright, MD, MPH, FRCSC
Young adolescents with chronic conditions need to begin preparing for the transition to adult care
Not long ago, it used to be that most children born with spina bifida would not survive to age 20. The condition, in which the spinal column does not close properly before birth, has several types and can create devastating problems. Over the decades however, surgery has helped improved both survival and the quality of life of these patients. Today, most children born with spina bifida will live full lives.
This incredible success has created its own issues though. Generally, patients with spina bifida like most chronic conditions, require ongoing care. While it is initially treated with surgery, care will not end in the post-operative ward. Nor will it end when the child grows up to become an adult. Spina bifida is just one of a growing list of chronic conditions which are successfully treated early, saving the life of the child, but making that child a patient for life into adulthood.
During early childhood, the responsibility for sticking with the ongoing care these patients need is primarily the responsibility of the parents. They bring the child to the appointments, and make sure their medications are taken at the right time and at the right doses. This demanding responsibility allows the child to gain his or her maximum potential and avoid bigger medical issues as they grow.
But as the child turns into an adolescent and ultimately an adult, that responsibility will shift from parent to patient. The question is, will they be ready to take on that responsibility?
Transition to adult care: patients, parents and clinicians
Imagine you have a growing and for the most part, responsible child. The day is coming that he will be allowed to stay at home by himself. No parent would introduce this responsibility to their child by saying: ‘We’re going on a month-long vacation to Thailand and it’s your job to look after yourself and the house’. More likely, advance preparation will be undertaken. A list of important phone numbers posted on the fridge. Do’s and Don’ts spelled out: yes, you may watch television; no, you may not use the oven. Some parents may even put their child through a home alone workshop to help train them to do it. Moreover, the child will be eased into being at home alone; at first it might just be for an hour after school. After a few years of this, the boy, now an adolescent, might be ready to take care of the house while his parents are on vacation.
As more and more children with chronic conditions survive into adulthood, the more the health care team has recognized the need to prepare patients to take responsibility for their health as young adults. Studies showed many were not making it to appointments and the quality of their health was going down. In general, it was a lack of adherence to treatment rather than lack of treatment options that was the impediment. In some cases, these came with devastating consequences.
But it’s not just the patients: there is also a need to train health care professionals on how to treat adult patients who have what have traditionally been thought of as paediatric conditions. In addition to spina bifida, many outside the pediatric world may have little experience with all manner of congenital conditions that were initially treated with surgery during childhood.
Put another way, the longer survival and better health of patients with chronic conditions can be a brand new treatment experience for patients and non-paediatric experts alike.
What parents can do to prepare their child. Some general advice
Parents of healthy children often have a tough time letting go and helping their child become independent. This is likely even more difficult for parents with a child who has a chronic condition. Children learn independence by making mistakes and for these children, the consequences of making mistakes could be a lot more serious. Still, it is critically important for these children to become independent. Parents should start small and early.
Preparing children for transition should begin at latest in early adolescence: the tween years. At that time, parents should begin shifting their involvement in their child’s care. This may mean getting your child to book his or her own health care appointment and then seeing the health care provider alone. Tweens should start practicing asking doctors questions to increase their comfort level. Encourage them to keep track of appointments and results.
Parents should also evaluate their child’s level of readiness for transitions over time. For example, does your child know the name of the condition, the type of drugs they take, and what constitutes an emergency situation? Does your child know how their prescriptions are renewed and paid for?
Parents should also remember that a chronic condition does not make their child immune to the false bravado typical of teenagers. Like their peers, their brain is still developing, their ability to calculate risk benefit analyses is undeveloped, and their hormones may be as out of whack as any other teen. With this in mind, the trick it to always get them to do the maximum they are capable of without going beyond their capacity.
Good 2 Go Transition Program
Based on the ‘shared management model’ of health care developed in Seattle a decade ago, the Good To Go Transition program is designed to help patients with different chronic conditions take ownership of their own healthcare. It provides evidence-based tools and advice to parents, clinicians, and adolescents on how to gradually shift responsibility and make a successful transition to adult care.
One of the tools developed is a ‘Healthcare Passport’, a printable wallet-sized card that summarizes a person’s health specifics. Filled out by the patient and generated on the web, there are templates for specific conditions as well as ones that are more general. From this information, the patient can also develop what is called the ‘three sentence summary’ to help them practice communicating to health care providers. The idea is that as the transition to adult care occurs, the now teenager will be meeting new healthcare providers in new settings. The experience can be daunting if not overwhelming. Learning how to describe their condition in just three sentences helps teens practice speaking about it in a way that is both concise and effective. While the Good 2 Go program and others like it are comprehensive, research to find best practices for transition to adult care is ongoing. And it’s a two-pronged approach: the professionals involved in this work are also aiding adult health care providers prepare to take care of these patients, creating champions for them on the other side.
Dr. James G. Wright, MD, MPH, FRCSC, is Surgeon-in-Chief, Robert B. Salter Chair of Pediatric Surgical Research, and Senior Scientist, Population Health Sciences at The Hospital for Sick Children (SickKids). He is also a professor in the Departments of Surgery, Public Health Sciences, and Health Policy, Management, and Evaluation at the University of Toronto.
More on transitioning to adult care for children with epilepsy, for children who have undergone a blood and marrow transplant, for kids with juvenile ideopathic arthritis, and children with congenital heart conditions.
For more on the Good 2 Go program including templates to create you own health passport.
Fetal surgery for spina bifida.
More columns by Dr. James Wright