The Sarcoma Policy Checklist was developed by a multi-stakeholder group of experts to help policymakers prioritise actions to close the gap in access to high-quality information and care for sarcoma patients in Europe.
Experts defined five key areas where policy efforts are most needed to improve the care of sarcoma patients across Europe. A pragmatic review of the published literature was then conducted to determine to what extent recommendations were implemented in practice. Research focused on six countries (France, Germany, Italy, Spain, Sweden and the United Kingdom) and was complemented by local expert interviews.
Five key priority areas were identified by experts: Each country should have designated, accredited centres of reference for sarcoma; specialised professional training should be provided to all health care professionals involved in sarcoma care; a multidisciplinary approach to care should be offered to every patient; greater incentives for research and innovation, and more rapid access to effective treatments are needed. Most countries have specialist sarcoma centres, however, there is often a lack of defined criteria to designate specialist centres and evaluate the quality of care. Professional training is a gap in all countries, as training on rare cancers is most often not included in the general medical curriculum or in oncologists’ training. More basic research is needed to understand the underlying epidemiology of sarcomas, and help focus research on effective treatments. Greater alignment between regulatory frameworks and access frameworks such as Health Technology Assessment is needed, particularly in terms of evidentiary requirements for new treatments.
The heterogeneity of sarcomas poses particular challenges to research, professional training and patient access to quality treatment and care. The creation of the European Reference Network (ERN) on sarcoma, and recent advances in defining essential requirements and patient-driven principles for sarcoma care will help improve the situation of sarcoma patients across Europe. This policy paper hopes to contribute to those efforts and help drive meaningful policy change to improve patient care.
Clinical trial identification
Legal entity responsible for the study
The Health Policy Partnership Ltd
Eli Lilly and Company Europe
N. Drove: Employment with Eli Lilly and Company, the pharmaceutical company that is funding this project. S. Boldon: Consultancy fees from Eli Lilly and Company as an employee of the Health Policy Partnership, which has led the coordination and policy writing for this project. S. Wait: Consultancy fees from Eli Lilly and Company as managing director of the Health Policy Partnership, which has led the coordination and policy writing for this project. All other authors have declared no conflicts of interest.