The Healthcare Professionals’ and Patient Advocates’ Perspectives on the Care for Children with Cancer in Europe—A Report from the ESCALIER Project

Abstract

Cancer in children and adolescents is rare. Therefore, experienced multidisciplinary teams of health care professionals and input from patient advocates are needed. Within the ESCALIER project, we present the current situation of care for children and adolescents with cancer in Europe from the perspective of these stakeholders and highlight the topics relevant for them. A survey developed by representatives from the European Society for Paediatric Oncology (SIOPE) and Childhood Cancer International-Europe (CCI-E) was sent to European paediatric oncologists and patient organizations. We analysed all six questions related to general aspects of care and ten questions especially relevant for SIOPE or CCI-E using descriptive statistics. In total, 159 paediatric oncologists from 35 European countries and 41 CCI-E member organizations from 30 countries replied. Six of the ten questions selected by SIOPE and CCI-E representatives were identical and covered topics from diagnosis to end of treatment and follow-up care. This highlights the alignment of topics relevant for both stakeholders. However, the answers provided by SIOPE and CCI-E respondents to the same questions differed to varying degrees, and answers also differed between respondents from the same country. The differences in the answers provided to our survey highlight the need to raise awareness, improve knowledge, and strengthen communication between different stakeholders, organisations, patients, and families. The stakeholders’ different experiences and knowledge must be considered, and can thus strengthen common goals to provide the best possible care to children and adolescents with cancer in Europe.

Keywords

• childhood
• cancer
• malignancy
• standards of care
• Europe