Reference centres for adults with rare and complex cancers – Policy recommendations to improve the organisation of care in Belgium

Rare and/or complex cancers call for a very specific expertise and adequate infrastructure. In Belgium, every hospital with a programme in oncology can deliver care for adults with rare and/or complex cancer types, without having demonstrated a specific know-how to adequately manage these patients. Therefore, the Minister of Health ordered a scenario for the organisation of care for adults with rare and/or complex cancers, taking into account the current Belgian situation and relevant foreign experience. Combined methods were used in this study: a literature review, the consultation of stakeholders, in depth discussions in 14 multidisciplinary groups leading to concrete proposals for several rare/complex cancers and the consultation of a panel of expert pathologists. The core recommendation is the set-up of shared care networks around reference centres, with multidisciplinary teams of recognised expertise in specific rare/complex cancers. The definition of minimum caseloads for hospitals and medical specialists, the evaluation of the quality of care, a model of diagnostic confirmation and the set-up of a national portal website which provides information on rare and/or complex cancers and reference centres are highly recommended. It is no longer practicable, efficient or ethical that every hospital or every practitioner continues to offer care for every rare/complex cancer. Improving the quality of rare/complex cancer care requires to concentrate expertise and sophisticated infrastructure in reference centres. Furthermore, the formation of networks between reference centres and peripheral centres will allow a delivery of care combining expertise and proximity. The next step is the translation of the recommendations into policy decisions. It is very well realised that this will take some courage and that a certain degree of resistance will have to be surmounted, but eventually, the best interest of the patient should prevail. Les cancers rares et/ou complexes exigent une expertise et une infrastructure adéquates. En Belgique, tout hôpital avec un programme en oncologie peut délivrer des soins pour les adultes souffrant de cancers rares et/ou complexes, sans avoir démontré un savoir-faire spécifique pour soigner correctement ces patients. Par conséquent, la ministre de la Santé a mandaté les auteurs pour proposer un scénario d’organisation des soins pour les patients adultes atteints d’un cancer rare ou d’un cancer exigeant des soins complexes tenant compte