Top Eleven Challenges facing kidney cancer patients worldwide
We asked the members of the IKCC Advisory Committee what they feel are the main challenges facing kidney cancer patients in their countries. Their answers were remarkably consistent:
1. Patients generally do not know the symptoms of the disease, so they are unable to ask for help immediately. The UK has launched a “blood in pee” awareness campaign, to alert the population in general that blood in the urine is an indication that you need to see your doctor promptly.
2. General practitioners are frequently unaware themselves of the symptoms, and are more likely to see blood in urine as a symptom of a urinary tract infection and treat with antibiotics rather than pursuing a possible diagnosis of kidney cancer. There is much work to be done in raising the visibility of kidney cancer among general practitioners.
3. Lack of access to care. While in most cases this means a shortage of specialists in rural areas, in the United States it is also a matter of lack of insurance coverage and funding for care. Nigerians travel to India because they do not trust the Nigerian healthcare system. Canadians travel to obtain service more rapidly than at home. Americans travel to achieve cost savings of up to 90%.
4. An increasing number of younger people are being diagnosed through incidental findings. While this is a good thing, they are frequently over-treated.
5. Patients report that information on their surgery, pathology reports and follow-up guidelines are not communicated in an effective manner to the patient by their urologist, leaving them with anxieties and open questions.
6. Exactness of pathology reports is perceived as uneven outside of university settings. The number of cases of kidney cancer is relatively small, and the experience of local pathologists with these cell types is weak. Along with the increased number of drugs, we need accurate pathology and genetics to help choose the right drug.
7. Not enough general practitioners and urologists are referring patients for genetic testing when the patient is young (under 50), has multiple or bilateral tumors, or has a relative with kidney cancer. If at all possible, a DNA diagnosis should be performed before the treatment is carried out. In most cases, people with a genetic condition that puts them at risk for multiple tumors need the most conservative treatment possible in order to preserve their kidney function throughout their lives.
8. Too often radical nephrectomies are being performed where partial nephrectomy would have been sufficient. This puts the patient’s lifetime wellness at risk, since the volume of working nephrons is predictive of the patient’s long-term kidney health. Wherever possible, partial nephrectomy should be the primary choice for small renal masses. This is especially important for people with genetic predispositions to kidney cancer.
9. Patients are not always consistent in their compliance with therapy recommendations. This is true in all countries, and probably has most to do with the lack of psychological support for people with cancer in general. They do not always receive a good explanation for why they are asked to follow through, and do not understand the importance of taking all the medication, returning on schedule for follow-up care, etc. Added issues include the cost of medicine, the distances they need to go for the treatment, and the management of side effects of the treatment (like diarrhoea). Finland has a strong network of support groups for cancer patients, where nurses are available by telephone, email, chat, or through a closed Facebook group. The coordinator is available by mobile phone.
10. Limited access to targeted therapy drugs for kidney cancer. Not all countries provide access for their citizens to the new targeted therapy drugs. There may be significant costs for the patient to pay, or drugs may simply not be available. Clinical trials usually are not available outside Europe and North America.
11. Financial constraints of the healthcare system and/or the patient. In the current European and global economic climate even the government of Finland has a difficult task deciding how on priorities for allocation of public resources, such as cancer screening programmes and post-treatment follow-up of cancer patients. Kidney cancer patients are kept under a post-treatment surveillance program for five years in the system of Central University Hospitals, after which they go back to the care of their local public/municipal health centers. Early diagnosis, more expensive drug therapy, and longer post-treatment screening process are continuing to challenge the national health system.
What is being done about these issues? More work needs to be done in all countries to educate general practitioners, urologists, and patients. Several countries are undertaking creative initiatives that could be copied in your own country.
Every country needs a patient brochure in local language, to help the patient understand what is going on, how to get the best treatment, and the importance of following through. These brochures should be available also to general practitioners. Very good brochures exist in English, French, and German and in a number of other languages. Members of this Coalition are willing to share. Most organisations will readily agree for you to translate their materials into local language as long as you get their permission and give credit to the source.
Efforts should be made to educate general practitioners on the signs of kidney cancer, and urologists on the latest treatment recommendations, especially for small tumors. There is generally little understanding of the role of oncology in treating kidney cancer.
See the UK “blood in pee” television advertisement and brochure: Earlier diagnosis will hopefully lead to less metastatic disease. Non-metastatic tumors are more efficient and less expensive to treat, and are less likely to recur. See the television advertisement at http://bit.ly/blood-in-pee-tv and the brochure is available at http://bit.ly/blood-in-pee
Finland has a guidebook currently in Finnish only, which they intend to translate into Swedish and English. It is available as hard copy or as a download at www.cancer.fi
Many thanks to the members of our Advisory Committee who contributed ideas and insights for this article:
• Maksym Yermakov, Ukraine
• Lee Marriott-Dowding, UK
• Caleb Egwenu, Nigeria
• Jay Bitkower, USA
• Nicole Giroux, Canada
• Timo Koponen, Finland