Families’ needs for pediatric oncology care in Osaka

Abstract

Children, adolescents, and young adults with cancer and their families have various needs in a wide range of life stages. We conducted a cross-sectional study using a structured questionnaire to understand the families’ needs for current pediatric oncology care in Osaka. Eligible participants were guardians of children or adolescents who were diagnosed as having cancer at ages under 20 years and undergoing cancer treatment at nine major pediatric oncology care hospitals in Osaka from 2015 to 2018. The questionnaire covered the following areas: (1) participants’ background, (2) information given before treatment, (3) supportive therapy, pain relief or reduction of emotional distress, (4) multidisciplinary team and consultation support, (5) treatment environment, (6) survivorship, and (7) overall reflections on cancer care. Two hundred out of 249 questionnaires (80%) were returned. The majority of participants reported being satisfied with the care they had received, whereas the proportion of respondents who received information on the late effects of treatment or potential risk of infertility varied among the hospitals. About half of respondents (95) reported that they had not been informed of the potential risk of infertility posed by their cancer treatment; 76 (80%) of them expressed a desire to be informed. Unmet needs were particularly high in terms of sibling support, hospital meals, bedside environment for accompanying family members, provision of information, and improvement in the application process for the medical expense subsidy. Sharing these identified needs with the medical staffs and local governments will help improve the pediatric oncology care delivery system.