Pediatrics is a place where sick and injured children are treated, but the number of patients who continue to suffer even in their 20s and 30s is increasing.
Many of them have been treated for serious illnesses as children.
When I heard stories from the medical field, it became clear that it is difficult to lead to treatment for adults, and there is a current situation where lives can be endangered.
I asked him what kind of problem he was having.
Growing numbers of adult patients Children's hospitals are now
I was guided to the pediatric intensive care unit by a doctor who wanted me to know the reality of a children's hospital.
A 23-year-old woman was being treated alongside her newborn baby.
In October, the woman developed pneumonia and was rushed to a general hospital near her home.
However, she said that it was difficult to manage her heart because she had undergone surgery for a congenital heart disease. I was transferred to the children's hospital where I was.
Woman's mother
: "I heard that the doctor at the first hospital who was transported was surprised that 'a difficult child has come.' However, there are only small children around me, and I feel very sorry for the teacher.”
Outpatients aged 20 and over account for 7% of the total
The hospital, Kanagawa Children's Medical Center, specializes in treating seriously ill children.
Pediatric care is usually targeted at people under the age of 15, but the hospital has approximately 2,300 outpatients aged 20 and over, accounting for 7% of the total.
These adult patients are increasing as medical technology advances to save the lives of children with serious illnesses such as congenital heart disease and childhood cancer.
More than 120,000 children are estimated to have been saved from diseases that were once difficult to treat.
As these children grow up, they continue to attend pediatrics.
'Transitional healthcare' not working?
Normally, as children grow up and become adults, they gradually move from pediatrics to adult specialists.
However, in the case of children who have undergone treatment for serious illnesses, it is difficult to transfer to adult medical care as it is, because regular observation of the treatment received as a child is still necessary.
Appropriate medical care that should be provided according to age, "transitional medical care" is necessary.
However, this “transitional care” is not working well.
Approximately 60% of adult patients visit a pediatrician even after becoming an adult
A nationwide survey conducted by a heart disease patient group revealed that about 60% of patients with heart disease from an early age continue to see a pediatrician even after becoming adults.
* 2018 “National Association for Protecting Children with Heart Disease” N = 369
There are only 7 transitional medical support centers nationwide
In order to promote transitional medical care, the national government has requested the establishment of at least one “transitional care support center” in each prefecture from 2017 onwards, which will play a role in linking pediatrics and adult clinical departments.
The center acts as a bridge between the pediatric and adult medical departments.
Since the adult clinical departments are divided by organ, etc., nurses at the center collect and connect information such as "this disease can be diagnosed in this clinical department."
However, according to the Ministry of Health, Labor and Welfare, as of February 2022, there are only seven prefectures with transitional medical support centers.
As a reason for this, there are voices that it is not possible to secure human resources such as doctors and nurses who are the core of operating the center.
Diseases in adulthood differ from those in children, pediatricians fear
What is the impact of the slow progress in transitional medical care?
There is also the issue of protecting the lives and health of the patients themselves.
A pediatrician who continues to see patients even after they become adults cannot protect the lives of patients because they cannot deal with diseases that develop in adults, such as myocardial infarction and diabetes, and the risks associated with pregnancy and childbirth. I'm afraid it might.
Dr. Sadamitsu Yanagi, Kanagawa Children's Medical Center
“We are pediatricians. I think it's a question that we have to think about whether there is any merit in examining adult patients."
In some cases, pediatric patients are refused admission because of bed occupancy
In addition, at the Kanagawa Children's Medical Center, it is said that there are cases where adult patients are also hospitalized and beds are filled, and there are cases where there is no choice but to refuse admission to new pediatric patients.
Dr. Sadamitsu Yanagi
: "We shouldn't create a situation where adult patients have nowhere to go, so we sometimes have to refuse admission to new pediatric patients. It affects the treatment of pediatric patients with difficult diseases. I'm worried that it won't come out."
Without knowing your own risk, even your life is in danger
A further challenge in transitional care is that patients themselves are often unaware of their illness, which was treated as a young child.
This is because in pediatrics, parents often receive explanations about illnesses from doctors.
There are even cases in which people's lives are in danger because they grew up without knowing enough about the disease.
Kazuaki Noro, a 28-year-old living in Tokyo, had a congenital heart disease and underwent surgery shortly after he was born.
He visited a pediatrician every few months for regular check-ups, but even as an adult he knew very little about his illness.
Mr. Kazuaki Noro
"I knew the name of the disease, but I didn't understand my disease at all. I have a scar on my chest, but I don't remember it at the time. I thought it was a mild disease, so I wasn't interested in it."
Noro graduated from a vocational school at the age of 19 and got a job doing maintenance of large heavy machinery.
After that, his condition deteriorated rapidly.
By the time he visited a pediatrician for a regular checkup, the symptoms of arrhythmia had already progressed.
At the hospital I was referred to, I immediately underwent major surgery using artificial blood vessels.
My doctor pointed out that I was putting a lot of stress on my heart because of working on a computer and having to stay in the same posture for a long time and carrying heavy parts on site.
"I was so tired that I sometimes had symptoms like lack of oxygen when I was commuting. But I thought it was the stress of work. Doctors told me that I was alive and well. I was surprised because I hadn't even thought of doing it.I feel that it is important to know about your illness with a sense of ownership."
make patients aware of their illness
How should we protect the lives of patients who are becoming adults?
Countermeasures are underway in Nagano Prefecture.
First of all, I would like to introduce the educational program of Nagano Children's Hospital.
Hospitals create unique age-appropriate educational programs to educate patients about their illness and encourage independence.
From around the age of 10, a nurse will teach the patient step-by-step about the mechanism of the disease, treatment details, and things to be aware of in daily life, while checking the patient's level of understanding using a check sheet.
(Nurse) “Can you name your disease?”
(Elementary school student) “Right ventricular onset of the great vessels”
(Nurse) “Wow!
(Elementary school student) "I don't have much right now."
(
Nurse) "Don't forget to drink water frequently."
Nurse Mihoko Kurashina
: “While dealing with adult patients, I had many bitter experiences of not understanding my illness. I'm working on it because I realize that it's necessary to receive proper medical care from a young age, and that it's necessary to work to have people understand the disease as their own from an early age."
In addition, at this hospital, patients around the age of 20 undergo a transitional care outpatient clinic in addition to regular medical examinations.
On the day of the interview, the doctor spent more than an hour explaining the risks of the disease to a 22-year-old man who underwent heart treatment when he was young.
Dr. Kiyohiro Takimo:
“I am 50 years old, and you, who had this surgery, have about the same life expectancy left. If medical treatment advances, it may be longer, but now that you are 50, be careful about your life. The most important thing is to go to the hospital.
“Patients should become independent to save their own lives.”
However, only about one-sixth of all pediatric hospitals and university hospitals nationwide have a patient independence education program like this one.
* FY2022
Joint research project survey of the National Center for Advanced Medical Research, Medical Research Collaboration Promotion Headquarters (Kubota group) Dr. Kiyohiro Takimo, Nagano Children's Hospital
She says that it is essential for people to understand their illness.
Dr. Kiyohiro Takimo:
"In the adult medical department, it is required that the patient decides the content of the treatment together with the doctor. The patient will also participate and think about the disease together. Ultimately, the patient must become independent so that he/she can protect his or her own life."
Collaboration between children's hospitals and adult hospitals
Furthermore, in Nagano Prefecture, children's hospitals and university hospitals are working together to find a solution to the problem of not being able to transfer to adult medical departments even after becoming adults.
At Nagano Children's Hospital, we provide opportunities for patients to be examined by doctors from university hospitals who specialize in heart disease treatment for adults.
Dr. Hirohiko Motoki of Shinshu University Hospital, a specialist in cardiology, visits the children's hospital twice a month and builds trusting relationships with patients, which leads to transfers to university hospitals.
On the day of the interview, I examined a 21-year-old man who underwent treatment for congenital heart disease shortly after birth.
He asked questions in a gentle tone.
(Dr. Motoki) “Did your pediatrician tell you to be careful about this?”
(Male) “To prevent tooth decay .”
(Dr. Motoki) “Yes. What would you do if the dentist asked you to pull out your tooth?”
(Male) “He says he has a heart disease.”
(Dr. Motoki) “Yes. It's called 'infectious endocarditis,' and it's a disease that causes swelling inside the heart.
Dr. Hirohiko Motoki, Shinshu University Hospital
"Patients have a strong sense of trust and a strong bond with the pediatrician who has been taking care of them for a long time, so it would be better if there was a step for them to get used to the treatment of adults at the university hospital. I think I can reduce the stress that comes with it."
Dr. Motoki studied at a children's hospital to take in patients with congenital heart disease he had never seen before.
Even after the patient has been transferred to the university hospital, we hold a monthly meeting with the doctor at the children's hospital to exchange opinions and decide on a treatment policy.
Dr. Hirohiko Motoki
“Cardiologists are familiar with the management of heart disease in adults, but I was confused because each patient with congenital heart disease has a different heart shape. Around that time, I was allowed to observe a doctor's examination at a children's hospital, and after about a year of understanding and research, I was able to examine myself."
“In the past, we used to be reluctant to accept adult patients because they were busy or it was difficult to allocate staff, but I would like to see more doctors in the adult department willing to see them. I have this feeling."
to save lives
"Transitional medical care" is gradually progressing, but even at Nagano Prefectural Children's Hospital, it is fumbling to find a doctor in the adult department to accept patients with diseases other than heart disease.
There are also voices from the medical field saying that it takes time and effort to support the transition, so financial support for medical institutions, such as medical fees, is necessary.
In order to continue to protect the lives that have become possible to save due to advances in medical technology, it is necessary that the need for transitional care is widely understood and measures are taken.