Working to improve the management of sarcoma patients across Europe: a policy checklist

Bernd Kasper,Nora Drove,Suzanne Wait,Sarah Dumont,Claudia Valverde,Alessandro Gronchi,Roger Wilson,Estelle Lecointe-Artzner,Athanasia Kanli,Markus Wartenberg,Shannon Boldon,Mikael Eriksson

doi:10.1186/s12885-018-4320-y

Abstract

BackgroundThe Sarcoma Policy Checklist was created by a multidisciplinary expert group to provide policymakers with priority areas to improve care for sarcoma patients.Main bodyThis paper draws on this research, by looking more closely at how France, Germany, Italy, Spain, Sweden and the United Kingdom are addressing each of these priority areas. It aims to highlight key gaps in research, policy and practice, as well as ongoing initiatives that may impact the future care of sarcoma patients in different European countries. A pragmatic review of the published and web-based literature was undertaken. Telephone interviews were conducted in each country with clinical and patient experts to substantiate findings. Research findings were discussed within the expert group and developed into five core policy recommendations. The five identified priority areas were: the development of designated and accredited centres of reference; more professional training; multidisciplinary care; greater incentives for research and innovation; and more rapid access to effective treatments. Most of the countries studied have ongoing initiatives addressing many of these priorities; however, many are in early stages of development, or require additional funding and resources.ConclusionGaps in access to quality care are particularly concerning in many of Europe’s lower-resourced countries. Equitable access to information, clinical trials, innovative treatments and quality specialist care should be available to all sarcoma patients. Achieving this across Europe will require close collaboration between all stakeholders at both the national and European level.

Highlights

The Sarcoma Policy Checklist was created by a multidisciplinary expert group to provide policymakers with priority areas to improve care for sarcoma patients.Main body: This paper draws on this research, by looking more closely at how France, Germany, Italy, Spain, Sweden and the United Kingdom are addressing each of these priority areas
This section aims to outline how well each country is doing in meeting recommendations of the Sarcoma Policy Checklist, focusing on some of the most salient issues discussed during expert interviews and identified in our review of the literature
Specialist sarcoma care Centres of reference for the specialised management of sarcomas exist in all six countries, but they are not always formally designated by explicit quality criteria, nor formally recognised by national bodies

Summary

Introduction

Main body: This paper draws on this research, by looking more closely at how France, Germany, Italy, Spain, Sweden and the United Kingdom are addressing each of these priority areas. It aims to highlight key gaps in research, policy and practice, as well as ongoing initiatives that may impact the future care of sarcoma patients in different European countries. Sarcomas are a family of rare cancers with a combined incidence of six people per 100,000 population, with 28,000 new cases each year in Europe [1] They develop in the connective tissues and bones, and can occur anywhere in the body, at any age [1]. The heterogeneity of sarcoma complicates research efforts: recruiting sufficient numbers of patients to large clinical trials is often impossible, epidemiological data are scarce and the evidence base to guide clinical practice is inadequate [1, 4, 5]

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Conclusion