Kidney cancer patients face a number of challenges, such as lack of awareness both by patients and their doctors, difficulty getting a diagnosis, limited access to treatment, inappropriate treatment, lack of information and lack of support. Given that there were an estimated 338,000 new cases of kidney cancer diagnosed in 2012 alone, this is a significant problem.
Following discussions at the International Kidney Cancer Coalition’s (IKCC) 4th Expanding Circles conference in Amersterdam earlier this year, the IKCC have published the Amsterdam Patient Charter for Global Kidney Cancer Care (Giles et al., 2014) which aims to address these challenges. The Charter outlines the rights of kidney cancer patients worldwide, and consists of ten points, which you can read here, and can be broadly split into three categories: clinical care, support, and information and empowerment.
Regarding clinical care, the charter states that patients should expect timely investigation, accurate diagnosis, access to the best available evidence-based therapies and treatment from doctors with specialist knowledge about kidney cancer. These measures will all lead to improved health outcomes for people with kidney cancer.
It was recently reported that doctors consistently underestimated the number of kidney cancer patients who became depressed after their diagnosis. The Amsterdam Patient Charter recommends that patients should be offered regular follow-up care, including psychosocial support, and given information about patient support and relevant advocacy organisations. Additionally, as kidney cancer can have long term health effects, patients should be given survivorship support, and recommendations about how to preserve health. These measures will help patients to cope with their illness and treatment and will allow patients to return to their normal lives.
Finally, patients should be offered accessible information specifically written for patients about all aspects of their disease course, including treatment, clinical trials, pain control, palliative care, survivorship and available support. Furthermore, patients should be given access to their medical records, and encouraged to take an active role in any decision-making regarding their treatment. Having better knowledge about their disease, and being given the opportunity to participate in the decision-making process, will empower patients to feel they have control over their care.
Of particular interest to BHD patients, point 10 of the charter highlights the fact that 10% of kidney cancer cases are caused by hereditary syndromes, and that these cases must be managed differently to sporadic cases. As these patients carry a genetic predisposition to develop kidney cancer, tumours must be treated more conservatively by partial rather than total nephrectomy, and patients require specialised care throughout their lifetime.
This initiative comes in same year as European Cancer Patients’ Bill of Rights, which aims to improve health outcomes by ensuring every European cancer patient has access to the best care, evidence-based treatment, and information. Although it is unclear how these charters will be enforced, their existence demonstrates the commitment of doctors, patient advocates, researchers and policy makers to improving the experience of cancer patients in Europe and kidney cancer patients worldwide.
- Giles RH, Maskens D, & the International Kidney Cancer Coalition (2014). Amsterdam Patient Charter for Global Kidney Cancer Care. European urology PMID: 25257033
www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.