‘Cancer survivor’ is a term that is commonly used in medical literature, where survivorship begins from diagnosis and initial treatment, to cure, cancer-free survival, and long-term follow-up care. Cancer survivors are becoming a fast growing population in the United States. According to the National Cancer Institute, to date, there are over 15.5 million cancer survivors in the U.S. and by 2026; this number is expected to grow to 20.3 million. The most common forms of cancer among female survivors include the following:
- Breast cancer - 44%
- Cancer of the colon or rectum - 9%
- Cancer of the uterine corpus - 9%
- Melanoma - 8%
- Thyroid cancer - 8%
The most common forms of cancer among male survivors include the following:
- Prostate cancer - 45%
- Cancer of the colon or rectum - 10%
- Bladder cancer - 8%
- Melanoma - 8%
- Non-Hodgkin lymphoma - 5%
Women with breast cancer and men with prostate cancer now represent the largest female and male cancer survivor groups in the United States. Needless to say, this estimate of cancer survivors is expected to grow due to further improvements in cancer screening, an increase in life expectancy after cancer treatment, as well as a shift in healthcare to primary care services. However, several reports reveal that cancer survivors do not receive appropriate primary care services. Although they may not require active treatment, there are other healthcare services that they need, including surveillance for recurrence, surveillance for the development of secondary cancers, monitoring and intervention for long-term psychological effects of cancer and its treatment, management of comorbid medical conditions, as well as routine primary and preventive care.
While cancer survivors are generally offered care in primary care settings, the role of primary care providers (PCPs) in terms of long-term care in now being strongly underlined. Primary care providers are intended to help cancer survivors cope with their new lives after the disease, as well as to ensure that they are continuously offered high quality care. In its 2006 report called From Cancer Patient to Cancer Survivor: Lost in Transition, The Institute of Medicine (IOM) identifies medical follow-up of cancer survivors as a major “lost” link and offers recommendations to fill the void. The IOM proposes 4 key recommendations:
- Surveillance for cancer recurrence or new cancers
- Intervention for the consequences of cancer and its treatment
- Care coordination between oncology specialists and primary care providers
Documentation, known as the survivorship care plan (SCP), was proposed in an attempt to provides the patient’s primary care provider with his or her detailed medical information, including:
- Diagnosis and treatment
- Actual and potential side effects from radiation and chemotherapy treatment
- Monitoring of cancer recurrence symptoms
- Recommendations for follow-up screening tests
- Recommendations for healthy survivorship based on patients’ mental well-being
Results from a new study
Unfortunately, despite the need for SCPs, the implementation of the recommendations made by IOM has been rather slow since it was last proposed. According to a recent study, Cancer Survivorship Care in Advanced Primary Care Practices – A Qualitative Study of Challenges and Opportunities, conducted by researchers at Rutgers University in New Jersey, primary care is not in a position to meet the specific health-related needs of cancer survivors. The study reveals how efforts, which have been long since made to provide long-term care to cancer survivors, have failed. Out of 12 advanced primary care centers chosen, none were seen to have a comprehensive cancer survivorship care program. “This is troubling because these are highly innovative practices that have a national reputation. As more and more people survive cancer, there will not be enough oncologists to follow these patients and meet their health care needs” said Benjamin Crabtree, senior study author, professor, and medical anthropologist.
For the study, researchers spend 10-12 days in each primary care center, where they interviewed clinicians, administrators, and patients in an attempt to identify the barriers relating to survivorship care in primary medicine. The evidence that they gathered allowed them to reach a few discouraging conclusions. “There is no diagnosis code for ‘cancer survivor’ that can be entered into the medical record, which is important if you want physicians to pay attention” said Crabtree. The team also discovered that electronic health records (EHR) used in primary medicine have restricted capacity to document extensive information on patients ‘cancer histories and therefore, physicians are not able to provide proper recommendations for follow-up care. Furthermore, the team found that patients’ medical records are sometimes lost during transfer among clinicians, thus leading to insufficient patient records.
Why cancer survivors should have access to primary care
When cancer survivors are placed in the care of primary care providers, they are more likely to come in for follow-up appointments, regarding both preventive care and other medical conditions. Yet, the study’s findings suggest that while primary care providers would like to care for cancer survivors, their knowledge and understanding of cancer therapies, as well as confidence in their own skills to monitor cancer recurrence, is lacking. Moreover, they are aware of their shortcomings and their need to stay up to date on the latest information in cancer care; however, they are not sure what steps need to be taken in order to address patients’ concerns down the line. “There is nothing in the residency curriculum about cancer survivorship. There is also nothing in Continuing Medical Education courses. It’s just not there” said Crabtree.
On the other hand, survivors value the medical care that they receive from primary care providers; however, they too question their understanding of aspects relating to cancer, including patients’ needs. Only by identifying the issues associated with such potential barriers of primary medicine can cancer survivorship plans become a central part of primary care. “Seventy-five percent of survivors are seen in primary care, demonstrating a reliance on primary care to address their needs; however, those needs are currently not being met” wrote the authors.
Fostering awareness all around
In addition to the study pointing out the need for primary care providers to be better educated in the needs of cancer survivors, it also identifies the significance of implementing the recommendations made by the IOM, including monitoring, coordination, intervention, and prevention. Such recommendations will help to grow awareness in cancer survivorship research as well as clinical care. Still, there are a few obstacles that need to be tackled. “Cancer survivorship begins with diagnosis and treatment, and we have to address how to integrate PCPs and optimize their role during this critical time. We need to identify those survivors who may fully transition to PCPs after treatment and prepare them for the process. For others who may need intermittent or ongoing oncology care, we should develop clear paths of communication and use information technology to help coordinate care. Despite competing demands, it is essential that medical school, residency training, and continuing medical education curricula incorporate topics in cancer survivorship” said Dr. Larissa Nekhlyudov, Associate Professor in the Department of Population Medicine at Harvard Medical School.
During these last few decades, immense effort has been put into developing educational courses and survivorship outlines for primary care providers. In turn, such courses and outlines will provide them with much needed and much desired guidance into the best approach to long-term care for cancer survivors.