Priorities on rare cancers' policy in National Cancer Control Plans (NCCPs): A review conducted within the framework of EU-JARC Joint-Action. (June 2020)

• Record Type: Journal Article
• Authors: Prades, Joan; Weinman, Ariane; Le Cam, Yann; Trama, Annalisa; Frezza, Anna Maria; Borras, Josep M.
• Is Part Of: Journal of cancer policy. Volume 24(2020)
• Publication Date: 2020-06
• Subjects: Rare cancers -- Health policy -- Healthcare interventions -- Healthcare organisation -- Cancer plan -- Cancer strategy; Cancer -- Government policy -- Periodicals; Cancer -- Patients -- Services for -- Periodicals; Medical Oncology -- Periodicals; Public Health -- Periodicals; Cancer; Periodicals; 362.196994
• DOI: 10.1016/j.jcpo.2020.100222
• Languages: English
• ISSNs: 2213-5383

Abstract

Highlights: Rare cancers are hardly addressed in European National Cancer Control Plans (NCCPs). Of the 15 plans analysed, only 8 considered rare cancers to some extent. Only 3 plans out of 8 included measures across the different areas of cancer control. Abstract: Objectives: Although one out of four persons affected by cancer in Europe has a rare cancer (RC), it is unknown to which extent they are addressed in National Cancer Control Plans (NCCPs) and National Rare Diseases Plans (NRDPs). The objective of this review was to analyse the content included in European NCCPs and NRDPs on RCs in adults. The working hypothesis is that RCs have a lower presence in NCCPs compared to more common cancers, and that NRDPs do not generally approach them. Methods: A review based on a documentary analysis on the priorities and recommendations in the area of RCs was conducted in 15 European NCCPs and 18 NRDPs. After identifying the areas covered therein, we performed a thematic analysis to allow a narrative description of the status of RCs' health policy. Results: Rare cancers are hardly addressed in NCCPs and not addressed in NRDPs. Of the 15 NCCPs analysed, only 8 contained some elements on RCs, and only 3 of these described specific measures to address this disease group or took a comprehensive approach. The cross-cutting analysis of the 8 NCCPs allowed identifying 14 critical issues necessary to reach a comprehensive approach to RCs' policy. Conclusions: The scarce presence of RCs in most of NCCPs may indicate low visibility and limited political understanding of their specificities. The critical issues emerging from the analysis are intended to improving the national policy frameworks addressing RC challenges and to place the NCCPs as strategic documents that must play a key role in this process.