The Amsterdam International Kidney Cancer Patient Charter was created to help ensure the more than one million people living with kidney cancer worldwide have access to the best available treatment, care, information, and support. IKCC aims to assist national kidney cancer patient organizations in helping patients and their families play an active role in the management of their kidney cancer and to gain a better awareness of what they can expect from their treatment and care.
Collectively, the global kidney cancer community declares that patients 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 (e.g. 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 tumours are hereditary in nature as part of familial syndromes, and that these patients require specialized and coordinated care over their entire lifetime.
The Charter was developed and signed by the participants of the 4th IKCC Annual Conference in Amsterdam in April 2014. It is entirely driven by patient organizations and is intended to underscore the global need for equity of care and access to expertise. The Charter contends that patient care and treatment can be improved on a global scale if those involved adopted the principles outlined in the charter.
Click here for the Amsterdam Patient Charter for Global Kidney Cancer Care (as pdf-download)
Acknowledgments: We are grateful to Julia Black and Markus Wartenberg for managerial support. Travel and accommodation for all attendees to the Amsterdam meeting were supported by equal funds from Bayer, GlaxoSmithKline, Pfizer and Novartis. There are no conflicts of interest.
We are thrilled the leading urological journal, European Urology (impact factor 12.5) has accepted our “Amsterdam Patient Charter for Global Kidney Cancer Care” for publication. European Urology Journal
Please click the link below for a copy of the Charter translated in the following languages: