In September, the International Kidney Cancer Consortium (IKCC) published the Amsterdam Patient Charter for Global Kidney Cancer Care in European Urology (Giles et al., 2014).
The charter declares that all kidney cancer patients worldwide have the following rights:
- Timely investigation and accurate diagnosis by medical experts with experience in treating kidney cancer;
- Patient-oriented information and education concerning all treatments including quality of life, side-effect management, pain control, and palliative care;
- Access to optimal, current evidence-based treatment as suggested by a multidisciplinary team of medical professionals possessing specialist knowledge about kidney cancer;
- Regular follow-up care concordant with national and/or international guidelines including appropriate and culturally sensitive psychosocial support;
- Access to medical records, including pathology and imaging reports, if requested;
- Provision of information on all available support systems, including patient support tools and local patient support and advocacy organizations;
- An active role in decision-making concerning the management of their kidney cancer (eg, patients should be offered a choice, whenever possible, in the surgical and medical management of their kidney cancer);
- Information regarding the availability of clinical trials in their country/region;
- Recognition that kidney cancer can have long-term effects, including heart disease and kidney function insufficiency. Patients should be provided with survivorship information, including medical and lifestyle recommendations; and
- Recognition that up to 10% of all kidney cancer tumors are hereditary in nature as part of familial syndromes, and that these patients require specialized and coordinated care over their entire lifetime.
This charter was signed by 21 members of the IKCC, an international coalition of kidney cancer patient advocates and organisations.