Surviving cancer, but not the system
As the numbers surviving cancer increase, the onus must be on ensuring that the pathways are in place to treat the whole patient and not just the disease, to ensure they and their families have the support necessary to aid the best transition back to everyday life.
As therapies improve, ever greater numbers of people are surviving cancer. These people need support right through from time of diagnosis and post cancer treatment. A total of 14.5 million survivors of cancer were alive in the US on 1st January 2014, with that number expected to rise to 19 million by the year 20241. Worldwide, in 2011, it was estimated that there were over 28 million people who had survived cancer within five years of diagnosis2. Further, it is estimated, based on 2012 data, that there will be approximately 14.1 million new cancer cases each year worldwide with increasing incidences of diagnosis and concomitant increases in the numbers of survivors3.
While all of this suggests good news, we need to delve further into the concept of survivorship. First, what is a ‘survivor’? The American Cancer Society defines a survivor as ‘…any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life’.1 Its report goes on to further characterise the stages of cancer survivors:
– Diagnosis to initial treatment
– Transition from treatment to extended survival
– Long-term survival.
“The fight against cancer is not a solitary battle, but one that includes family members, caregivers, friends and co-workers, all of whom can effectively be called ‘survivors'”
Second, we need to understand that the fight against cancer is not a solitary battle, but one that includes family members, caregivers, friends and co-workers, all of whom can effectively be called ‘survivors’ because of the tangential reach of the disease.2 Understanding survivorship must encompass the effect of a cancer diagnosis on the lives of these other groups.
More critically, as it relates solely to the clinical management of cancer, the American Society of Clinical Oncology has noted4 these emerging forces that could significantly impact patient access to care in the future:
• Demand for oncology services will grow by 42 per cent by the year 2025
• In this same time period the supply of oncologists will grow by only 28 per cent, leaving a shortage of more than 1,487 professionals
• The median size of physician practices increased from nine to 15 from 2012 to 2013, indicating an increasing consolidation and mergers of practices
• Financial pressure has been cited as the greatest threat to providing high-quality patient care.
While all of these issues impact patients and their care, the conversation obviates many of the other components of living after, or with, cancer. There are many subtleties relating to quality of life, dependent on the disease type, age at diagnosis, treatment-related side effects and the potential for secondary cancers2. Many of these issues go beyond the physician’s clinical discipline and/or comfort level, e.g. sexual satisfaction post-genitourinary cancer treatment or psychological stresses in returning to the workplace. It is the recurrent theme of treating the disease, but not the patient. Patient-centricity goes far beyond treatment modalities and must include desired quality of life expectations and the capability to return a ‘whole and entire’ person to the society they were a part of prior to the cancer diagnosis.
There will be an increasing need for primary care physicians to take over from the oncologists to provide psychological, as well as clinical, support for their patients. There will be a requirement to engage in dialogue with the patient and family to be able to provide referral to speciality services, e.g. sexual dysfunction, self-image reinforcement, guilt management.
In addition, government and insurers will have to better address the financial pressures related to both potential recurrent or secondary disease as well as the increasing cost of cost itself. As we set guidelines for the management of various cancers, it is equally obvious that the need for guidelines relating to the management of survivorship should become a priority.
Survivorship mandates more, and comprehensive, partnerships between healthcare professionals, research groups, public health agencies, financial providers and community organisations with necessary patient input to ensure that patient-centricity remains constant and consistent from ‘the time of diagnosis through the balance of life’.
About the author:
Virgil Simons is the founder and president of The Prostate Net, a non-profit patient education and advocacy organisation committed to providing credible and actionable information that will minimise the negative impact of prostate cancer. Using experience gained as an 18-year survivor of prostate cancer and a patient advocate, over the past 16 years he has built an international organisation that addresses disease risk awareness, early disease interdiction and advanced stage disease management. Contact him on Email: firstname.lastname@example.org
Have your say: Are health systems providing the broad care cancer survivors need?
Read more from Virgil Simons: