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Construction of a barrier-free symbiotic society model through treating children with intractable diseases and promoting their health

2014.06.16

Unit Name:
Create the KIZUNA through Sick Children
Unit representative:
Professor Ryo Sumazaki, Faculty of Medicine

Unit members:
28 (28 faculty members, 0 postdoctoral fellows, none from other organizations)

Key words:
pediatric intractable disease, total human care, childcare support, society that does not generate disadvantaged people

 

Among pediatric intractable diseases, it was previously difficult to cure pediatric cancer, but more than 70% of children with cancer are now treatable owing to the marked advancements of medicine. However, in order for children undergoing treatment for cancer or those who have received such treatment to achieve sufficient well-being in their lives, it is necessary to aid them in adapting to society. Our research unit aims to establish treatment strategies for pediatric cancer patients that involve fewer side effects, train human resources to become professionals (e.g., healthcare providers, nursery teachers, psychologists, and social workers) who support children undergoing treatment for cancer or those who have received such treatment, and create a barrier-free symbiotic society where such children can thrive.

Provision of treatment associated with fewer side effects for children

To provide children with cancer with treatment associated with fewer side effects, we are conducting research in cooperation with various departments. For example, proton therapy that is currently available in our university as one of the advanced radiotherapies involves markedly fewer side effects compared to typical X-ray therapy, and so we can accept children who desire to receive this therapy from throughout Japan. In addition, the University of Tsukuba was the first to perform gene therapy for recurrent pediatric leukemia patients in Japan (Figure 1). We are currently developing novel gene therapy for other types of disease.

Figure 1: If leukemia recurs after bone marrow transplantation When lymphocytes derived from the bone marrow donor are additionally injected (donor lymphocyte infusion therapy), they are likely to attack leukemia cells (graft-versus-leukemia reaction [GVLR]). On the other hand, such cells may also attack normal tissues and/or organs (graft-versus-host disease [GVHD]). It may be impossible to treat severe GVHD with normal drugs. When certain viral genes (▲) have been integrated into donor lymphocytes, antiviral drugs that essentially do not influence human cells cause cellular apoptosis.

Figure 1: If leukemia recurs after bone marrow transplantation
When lymphocytes derived from the bone marrow donor are additionally injected (donor lymphocyte infusion therapy), they are likely to attack leukemia cells (graft-versus-leukemia reaction [GVLR]). On the other hand, such cells may also attack normal tissues and/or organs (graft-versus-host disease [GVHD]). It may be impossible to treat severe GVHD with normal drugs. When certain viral genes () have been integrated into donor lymphocytes, antiviral drugs that essentially do not influence human cells cause cellular apoptosis.

Approaches to train human resources to become supporters of children and create a society in which children can lead happy lives

We also consider that it is important to provide children with intractable diseases with support that enables them adapt to society while under or after treatment. Therefore, we are working to promote such children’s returning to school and their healthy growth in cooperation with school teachers. In addition, we are training human resources to become not only physicians, but also various other types of professional as supporters (e.g., medical nursery teachers) of children (Figure 2). We have also established systems to closely cooperate with peripheral medical centers and administrative bodies (e.g., health-related centers, welfare-related facilities, and schools), and are nationally proposing them as a model to efficiently use social resources. The above-mentioned young professionals are actively engaged in their duties throughout Japan.
We desire to not only treat children with diseases, but also resolve various problems that they encounter in the process of their growth in cooperation with them. We also aim to create a society in which children can achieve sufficient well-being, and aid them in adapting to such a society.

Figure 2: Total Human Care System employed by the University of Tsukuba Hospital

Figure 2: Total Human Care System employed by the University of Tsukuba Hospital

Social contributions and achievements
● Improvement in the rate of curing pediatric cancer, which is a predominant cause of mortality among Japanese children

● Encouragement of pediatric cancer survivors to participate in society through reducing side effects and treatment toxicity, and providing specialized education
● Analysis of factors related to treatment receivers, and the adjustment of their environments through providing specialized education and conducting awareness-changing/raising activities
● Proposal of a model intended to: 1) achieve an advanced barrier-free symbiotic society in cooperation with multiple professions and target individuals (children with intractable diseases, those who have overcome intractable diseases, and handicapped children); and 2) respond to society in which the population is aging and the nursing care need is marked through sustaining favorable interpersonal relationships
● Proposal of a society that does not generate socially disadvantaged individuals

(Interviewed on October 18, 2013)


Research Administration/Management Office at U Tsukuba TEL 029-853-4434