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April 25 is “Childhood Cancer Gold Ribbon Day” established by the Gold Ribbon Network, a certified Non-profit Organization(NPO) in Japan. Every year, this day is designated to promote understanding of childhood cancer in the hope that many people will know regarding childhood cancer and the children who are facing the disease, and expand the circle of support.
Unfortunately, a persistent problem of “drug lag” exists in drugs for the treatment of pediatric cancer in Japan, where drugs that are available outside the country take time to become available in Japan, even if they exist. Recently, a phenomenon called “drug loss” exists in which new drugs approved overseas do not enter Japan. Imagining that pediatric cancer patients face a greater burden than adult cancer patients is also easy, not only in Japan but also in other countries.
Therefore, on the occasion of the Childhood Cancer Gold Ribbon Day, CareNet conducted a questionnaire survey on pediatric cancer among physicians in the field of Pediatrics and Oncology. The target group consisted of 100 doctors who treat pediatric cancer patients and prescribe therapeutic drugs. The results revealed the following points.
When asked about “serious problems for pediatric cancer patients (up to three answers),” the most common response was “physical and mental burden caused by treatment (lack of treatment, lack of response to existing drugs, side effects, many tests, etc.)” (67%). The response was followed by “academic-related issues such as delays in learning and returning to school due to hospital visits and treatment” (51%) and “issues related to treatment implementation such as lack of evidence, prolonged treatment, and transition to adult medical care” (35%). Many responses were received on treatment-related issues such as treatment satisfaction and treatment optimization.
In “The most serious problems for families of pediatric cancer patients,” the most common response, at 49%, was “Impact on social life such as work due to medical examinations and hospital visits,” followed by “Difficulty in gathering information on the disease, treatment methods, treatment facilities, etc.” (33%), which was much higher than “Financial burden such as treatment costs and hospital visits” (11%).
In the “What information do doctors feel they require more of regarding pediatric cancer treatment (up to three answers),” the most common response was “Information on improvement of patients’ Quality of life(QOL) and care” (53%), followed by “Information on clinical trials in Japan and the latest evidence of investigational drugs and treatments” (41%) and “Financial and life support for patients and families” (38%), with almost equal numbers of responses.
In the “Cancer types that physicians feel the most drug lag or loss in drug treatment for pediatric cancer,” 91 out of 100 respondents answered. The most common type was “leukemia, myeloproliferative and myelodysplastic diseases.” This was followed by “CNS(central nervous system) and miscellaneous intracranial and intraspinal neoplasms” and “Neuroblastoma and other peripheral nervous cell tumors.” In pediatric oncology, the more common the cancer type, the more treatment options are desired.
We hope that the “Childhood Cancer Gold Ribbon Day” will bring attention to the drug lag in the treatment of childhood cancer and reduce the burden of childhood cancer patients and their families.
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