Transitional care is defined as “medical care that supports the development of children into adults and acts as a bridge to move (transfer) medical care from for children to for adults.”
As you have been fighting a disease since you were young, a support program is needed to help you (or your child) become an adult who can take care of yourself with accurate information about your disease.
Since the 1980s, advances in pediatric medicine have improved the treatment of diseases that persist from childhood (pediatric chronic diseases), which has led to an increase in patients surviving into adulthood. How these patients should be treated when they reach adulthood has been discussed, and further examined in the U.S. in the period from 1990-2000. It has also been actively discussed in Japan since 2010. In 2014, the Japan Pediatric Society published its first recommendations on transitional care, “Recommendations on Transitional Care for Patients with Childhood-Onset Diseases”
It is recommended that treatment should be tailored to the physical and emotional changes (e.g. puberty) and environmental changes (e.g. education, employment, marriage) that occur as patients move from childhood into adulthood.
The aim of transitional care is not only help the patient transition out of pediatric care into adult medical care, but also to ensure that patients have a better understanding of their disease and to help them look to the future, such as what educational or employment opportunities they may wish to pursue.
There are many differences between the medical care of children and adults. Some diseases are treated differently in children than in adults, for example, different medications may be used. There also may be differences in the way you and your family communicate with doctors and nurses (healthcare professionals), as well as differences in the social system (e.g. medical insurance). It is important for you and your family to understand these differences.
The transition program is a system that allows us to work with you and your family as a team to make changes gradually in a planned way, taking all of the factors described above into account. Transition programs are being developed in several hospitals/institutions in Japan, even though the names of these programs may vary slightly from institution to institution. Please refer to “What is a transition program?” for more details.
Many people may think that “transition” only refers to “moving to a department/hospital for adult patients.” However, this is merely transfer (or change to adult department/hospital) and while this forms part of the transition, it is not the goal.
You know it is important to understand your disease and to take care of yourself.
In the Department of Pediatrics, we have been committed to supporting the independence of each child in our daily medical practice, in order to help them grow and develop a deeper understanding of their disease and to give them the self-reliance they need to make their own decisions about their own healthcare in the future.
When you are in the upper grade of primary school, we would like you to understand the nature of the disease you have and why it is necessary for you visiting the hospital regularly. It would obviously be difficult for you to suddenly be told to understand your disease and treatment and to take care of yourself. It is important in the transition to take the time to face and learn about your disease, and to gain a level of independence/self-reliance, starting from the upper grade of primary school.
Of course, it is also important to change the department or hospital you attend.
Naturally, we fully appreciate that you would like to keep seeing the same doctor you have seen since you were a child. However, doctors have their own specialties, strengths, and weaknesses. Pediatricians are unfamiliar with adult-specific diseases or conditions that you may experience in adulthood. These include lifestyle-related diseases (such as diabetes and high blood pressure, which are more common in adults), malignancy (cancer), and care during pregnancy and childbirth. Some patients may feel strong resistance to visiting a pediatric emergency department, or they may feel uncomfortable about being admitted to a ward full of children.
There is no fixed timing regarding when you should transfer to a department/hospital for adult patients. Please discuss this with your doctor and determine when you should transfer, and take our time to start make specific preparations for your transfer so that you do not have to suddenly make the change to an adult department/hospital.
A transition program comprises a series of steps that are taken to help you become more independent and self-reliant, and to work with you in your preparations for making a smooth transition to an adult department/hospital in the future.
It is recommended to start the transition program at an early age, preferably in the upper grades of primary school, as this is when someone can gain an understanding of his or her disease. It is important for patients to be actively involved in the program. The program begins by gradually building up the patient’s interest and knowledge about why he/she is visiting the hospital regularly and the nature of his/her disease. We work together as a team that includes doctors, nurses, pharmacists, psychologists, social workers, and other professionals.
An example of a transition program at the Tokyo Metropolitan Children’s Medical Center is described below.
The Tokyo Metropolitan Children’s Medical Center gives patients an A4-sized leaflet, printed on the front and back, called “About the transition” at their first outpatient visit after reaching the age of 15. The leaflet includes “Why do I need transitional care?” “Why is it important for me to know about my disease and to be independent?” as well as other information. We will help you to understand why transitional care is important for you, and you will be asked to visit our Transitional Care Outpatient Department. At the department, the transition checklist described in the section on transition support tools will be used, and you will take an active part in the process of gaining your independence and becoming self-reliant.
The nurse will methodically check what you do and do not understand, and what you can and cannot do. The nurse will share the results of this assessment with your doctor, and if there is still anything you do not understand, the doctors or nurses will give you an additional explanation at the outpatient department. By repeating these steps, you will come to understand your disease and be able to take care of yourself properly. Once we are sure that you have gained a clear understanding of your disease, you will graduate from the Transitional Care Outpatient Department.
When you turn 18, you will be asked to visit the Transitional Care Outpatient Department again and write a “Transition Summary”by yourself. If you can write your own Transition Summary, you are ready for the transfer.
You should discuss with your doctor the actual timing of the transfer to an adult hospital.
Please note that the pediatrician and the doctor for adult patients will keep in touch to share your information. You do not have to completely leave the pediatrics department as you move to the adult hospital. It is possible to visit both hospitals for a short while and then completely move to the adult hospital only when you feel comfortable.
Before transferring to an adult department/hospital, you need to understand your own disease and gain the capacity to make your own decisions (self-reliance). Therefore, we need to let you know what you can and cannot do. Transition readiness assessment tools will help you; these include the self-administered transition readiness assessment and medical summary.
The self-administered transition readiness assessment consists of items designed to ensure that you are able to take care of yourself and are independent/self-reliant. These items include whether you understand your disease, the tests you need and the medication you are currently taking, whether you can manage your own medication, whether you are able to change outpatient appointments and if you know which symptoms you need to see a doctor for.
Many hospitals use their own checklists. As an example, we will refer to the self-administered transition readiness assessment used by the Transitional Care Outpatient Department of Tokyo Metropolitan Children’s Medical Center.
Self-administered transition readiness assessment used by the Transitional Care Outpatient Department of Tokyo Metropolitan Children’s Medical Center Download
By filling in the checklist, you can find out if you have a good understanding of your disease and what gaps you have in your knowledge, as well as what you should know. You can also share your completed checklist with your doctors, nurses, or other team members to find out how much you know about your disease, and your doctor or nurse will be able to provide you with the additional information you need when you visit the outpatient department.
The medical summary is a summary of your disease process from your first visit to the hospital, your test results, the treatments you have received, the medications you are taking, what you need to take care of in your daily life, what to do if you suddenly feel unwell, and the contact details of your doctor. There is no established format. You will be asked to write your own summary and take it with you when you move to an adult hospital.
By writing your own summary, you can review and check your disease and its process again, and gain a better understanding of your results of your medical examinations and treatments. It will also help you to explain your disease in your own words to the doctor who will treat you at an adult hospital. For reference, we will provide you with the Medical Summary used by the Transitional Care Outpatient Department of Tokyo Metropolitan Children’s Medical Center.
Medical Summary used by the Transitional Care Outpatient Department of Tokyo Metropolitan Children’s Medical Center Download
There are a number of recommendations and guides on transitional care, some of which are shown below.
You can find information about transitional care in books, on hospital and local authority websites, and publications from nephrology and other medical societies.