Pediatric Cancer Patients’ Important End-of-Life Issues, Including Quality of Life: A Survey of Pediatric Oncologists and Nurses in Japan

Abstract

BACKGROUND: Research into the key themes and concepts of quality of life (QOL) relevant to the end-of-life (EOL) care of pediatric cancer patients in the Japanese context is imperative. OBJECTIVE: This study aimed at identifying the key items and constructive concepts of QOL at EOL of pediatric cancer patients. DESIGN: In 2015, pediatricians and nurses were recruited from 163 pediatric oncology treatment facilities in Japan. The questionnaire was developed on the basis of a previous qualitative study. Items that were rated as “very important” or “important” by at least 80% of the respondents were considered as “common and important” QOL items. Exploratory factor analysis was performed to conceptualize QOL of the pediatric cancer patients during EOL care. RESULTS: A total of 157 pediatricians and 270 nurses participated in this study. Fifty-five items were refined to 35 “common and important” QOL items. On factor analysis, 12 domains (containing 29 items) were identified: playing and learning; fulfilling wishes; spending time with family; receiving relief from physical and psychological suffering; making many wonderful memories; having a good relationship with the medical staff; having a peaceful death in the presence of family; spending time with a minimum of medical treatment; living one’s life as usual; spending time in a calm hospital environment; being oneself; and having a close family. CONCLUSIONS: Although the respondents in this study were medical care providers rather than the patients or their family members, findings should help medical staff provide better palliative care to Japanese pediatric cancer patients.