Every year, about 20 thousand Dutch people are told that they have a rare form of solid cancer, according to the Comprehensive Cancer Center of the Netherlands (IKNL). However, the number of patients per cancer type is always small. These patients have on average a lower chance of survival and a lower quality of life than patients with a common form of cancer.
“This is partly due to a complex and longer diagnostic process and a lack of treatment options, a lack of expertise among practitioners and a lack of good information, as perceived by the patient,” explains IKNL.
IKNL advocates better organization of expert care. “Expert care must be available for the entire care process, from (pre)diagnosis (including imaging, pathology, molecular diagnosis) and treatment to aftercare (rehabilitation, rehabilitation) or palliative care. Expert care is therefore by definition multidisciplinary and increasingly only possible by bundling multidisciplinary expertise. (..) The first priority is that expert care must be available to patients and professionals who are confronted with rare cancer.”
Steps taken
In recent years, oncology care has already taken steps to improve care for patients with rare cancers. There are now tumour-specific multidisciplinary national working groups, regional tumour-specific networks, cross-hospital expert panels, the standards set by the Oncological Cooperation Foundation (SONCOS), the European Reference Network on Rare Adult Cancers (EURACAN), the establishment of European Reference Networks (ERNs) and the recognition of expertise centers by the Ministry of VWS.
Unambiguous criteria
So there is a lot, but the various initiatives do not always fit well together, says IKNL. “For example, VWS-recognized expertise centers and specialized hospitals that have emerged from the field do not always correspond. There is therefore room for further improvement here. Unambiguous criteria for expertise are needed that do justice to the complexity and heterogeneity of the diagnosis and care of rare forms of cancer.”
Concentration
Concentration can contribute to a better quality of care, as has been increasingly the belief in recent years. For example, the National Health Care Institute announced last year that it is taking charge of the reform of cancer care, partly to promote concentration. For a number of rare cancers, care is already concentrated and this is expected to be further implemented. “However, centralizing care does not seem necessary or even desirable for every rare form of cancer,” IKNL notes. “Partly because a rare diagnosis does not necessarily mean a rare treatment. Organization of expertise as part of network care is important, especially (but not only) where centralization is not necessary, possible or desirable.”
Based on the characteristics of a specific rare cancer, it must be determined whether centralization is desirable, says IKNL. If that is not the case, binding agreements within networks must guarantee expert care for every patient. “Good cooperation requires, among other things, adequate funding, because both expert care and network care have problems in that area that hinder patients’ access to expertise,” says IKNL.