Hiroki Hori1,2, Asuka Ohta3, Honami Matsui3, Kanako Yano3, Miyuki Morita-Tominaka4, Zayar Linn3, Daisuke Masumoto3, Yosuke Okumura3,5, Satoshi Okamura3,5, Kosuke Kurihara3,5, Akira Hayakawa6, Takeshi Rikiishi7, Kyoko Kobayashi8. 1. Department of Medical Education, Mie University Graduate School of Medicine, 2-174 Edobashi, Tsu, Mie, 514-8507, Japan. hhori@clin.medic.mie-u.ac.jp. 2. Department of Pediatrics, Mie University Hospital, 2-174 Edobashi, Tsu, Mie, 514-8507, Japan. hhori@clin.medic.mie-u.ac.jp. 3. Department of Medical Education, Mie University Graduate School of Medicine, 2-174 Edobashi, Tsu, Mie, 514-8507, Japan. 4. Department of Pediatrics, Mie University Hospital, 2-174 Edobashi, Tsu, Mie, 514-8507, Japan. 5. Department of Pediatrics, Mie University Graduate School of Medicine, 2-174 Edobashi, Tsu, Mie, 514-8507, Japan. 6. Department of Palliative Medicine, Yodogawa Christian Hospital, 1-7-50 Kunijima, Higashi-Yodogawa-ku, Osaka, 533-0024, Japan. 7. Department of Pediatrics, Tohoku University Graduate School of Medicine, 2-1 Seiryomachi, Aoba-ku, Sendai, Miyagi, 980-8575, Japan. 8. Department of Child Health Nursing, St. Luke's International University Graduate School of Nursing Science, 10-1 Akashi-cho, Chuo-ku, Tokyo, 104-0044, Japan.
Abstract
BACKGROUND: The practice of cancer diagnosis disclosure to children has been changed with the times. The regulations of clinical trials in the 2000s might change the practice in Japan. However, the perspective of this topic among children and adults has not been investigated in detail. METHODS: We studied changes in the practice of information sharing with children with cancer at pediatric cancer centers and the perspective of cancer diagnosis disclosure to children among school children, their parents and pediatric oncologists in the last 20 years by comparing the results of questionnaire surveys conducted in 1998, 2008 and 2018. RESULTS: This study revealed that the performing rate has increased with the times, but the institutions actively performing for children aged 7-9 years were 36.4% even in the 2018 survey. More than 70% of children wished diagnosis disclosure if they suffer from cancer in the series of surveys, while the ratio of parents who tell cancer diagnosis to their children hovered at 34.5 to 53.7% (p < 0.001 in all surveys). The ratio of pediatric oncologists having the policy to perform diagnosis disclosure proactively increased from 9.3 to 60.0%, while that of parents having the same policy stayed at 5.3% even in 2018. CONCLUSIONS: The performing rate of information sharing with children with cancer was significantly changed in the last 20 years. The opinion gaps were observed between parents and children and between parents and pediatric oncologists.
BACKGROUND: The practice of cancer diagnosis disclosure to children has been changed with the times. The regulations of clinical trials in the 2000s might change the practice in Japan. However, the perspective of this topic among children and adults has not been investigated in detail. METHODS: We studied changes in the practice of information sharing with children with cancer at pediatric cancer centers and the perspective of cancer diagnosis disclosure to children among school children, their parents and pediatric oncologists in the last 20 years by comparing the results of questionnaire surveys conducted in 1998, 2008 and 2018. RESULTS: This study revealed that the performing rate has increased with the times, but the institutions actively performing for children aged 7-9 years were 36.4% even in the 2018 survey. More than 70% of children wished diagnosis disclosure if they suffer from cancer in the series of surveys, while the ratio of parents who tell cancer diagnosis to their children hovered at 34.5 to 53.7% (p < 0.001 in all surveys). The ratio of pediatric oncologists having the policy to perform diagnosis disclosure proactively increased from 9.3 to 60.0%, while that of parents having the same policy stayed at 5.3% even in 2018. CONCLUSIONS: The performing rate of information sharing with children with cancer was significantly changed in the last 20 years. The opinion gaps were observed between parents and children and between parents and pediatric oncologists.