The National Comprehensive Cancer Network (NCCN) held its 19th annual meeting March 13-15 in Hollywood, Florida, and Connexion Healthcare was there. We attended numerous exhibits, poster sessions, and symposia, and were pleased to see NCCN pursuing its mission of improving the quality, effectiveness, and efficiency of cancer care. Three topics specifically caught our attention.
Patient surveillance: a delicate balance
A point/counterpoint session highlighted patients’ and oncologists’ attitudes toward optimal post-treatment surveillance. One presentation given by Crystal S. Denlinger, MD, and Terry S. Langbaum, MAS, “Point/Counterpoint: Challenges of Communicating With Patients About Optimal Post-treatment Surveillance,” focused on patient expectations versus scientific evidence—an incongruous juxtaposition that often leaves patients feeling let down about their level of care.
It is indisputable that cancer treatment has over the past several decades improved in effectiveness and efficiency to the point that, for many, cancer has become a chronic disease as opposed to a death sentence. Perhaps due in part to this achievement, and to a more informed patient population, oncology patients have come to view ongoing disease surveillance as a mark of “good practice.” While doctors and caregivers may celebrate completion of chemotherapy, patients may continue to experience anxiety as they are released from continual care and close monitoring. In the period following completion of chemotherapy, each ache and pain is a cause for worry to the patient. In the past, these worries were enough for oncologists to order additional and potentially toxic scans and tests. Today clinicians tend to avoid these additional tests.
For many patients, surveillance has become an insurance that they remain disease free. In patients found to be without disease, the potential psychological benefits are obvious, and even if a recurrent tumor is detected, the patient’s perspective is that the earlier the detection, the better the chance for cure.
Unfortunately, patients’ desire for more surveillance is not in alignment with scientific evidence, as Dr Denlinger explained. The methods and intervals of testing are based on general principles of surveillance, such as the projected time of maximal risk of recurrence and the natural history of cancer. Testing should be directed toward highly predictive recurrence sites, while taking into consideration the potential for cure, palliation, risk of secondary malignancy, and complications of therapy.
In addition, patients may not appreciate that surveillance itself may entail risks. Dr Denlinger reviewed the results of several studies that could be communicated to patients whose requests for increased surveillance appear overzealous. In one study of more than 31,000 patients who underwent diagnostic computed tomography (CT) in 2007 and over the previous 22 years, 7% experienced an increase in cancer risk of ≥1% due to CT radiation.
Dr Denlinger also reviewed several cancer studies that clarify the value of intensive surveillance in some conditions. Breast cancer recurrence occurs up to 20 years postdiagnosis and is detected in 74% of cases, either upon symptoms or physical examination. Dr Denlinger first reviewed a study typical in its findings of the impact of surveillance on breast cancer outcomes. Of 1320 patients with stage I-III breast cancer randomized to receive intensive versus no surveillance, there were no differences between treatment arms in health-related quality of life, including emotional function and satisfaction with care, yet 70% of patients wanted diagnostic tests even if they were symptom free. In a comparable trial of 1243 women with unilateral surgically treated breast cancer randomized to receive either intensive surveillance (chest x-ray and bone scan) or clinical follow-up with annual mammography (all patients treated according to guidelines), there were no differences between treatment groups in 5- and 10-year survival. Relapse-free survival was shorter in the intensive surveillance group. Ten-year mortality was 3.3% higher in the intensive surveillance group. According to Dr Denlinger, a more recent breast cancer study has demonstrated that time to and site of recurrence—but not surveillance—influences survival.
Dr Denlinger went on to review similar trials of colorectal, lung, prostate, gastric, pancreatic, and ovarian cancers. For the majority of cancers, she concluded, intensive surveillance has not demonstrated an improvement in survival. In order to implement truly optimal surveillance strategies, it is important to communicate the routine risks, benefits, and realities of routine imaging and laboratory studies through frank discussions with patients.
Honesty begets hope
The 19th Annual Conference opened with a roundtable discussion titled, “The Child’s Experience When a Parent has Cancer,” moderated by Lillie D. Shockney, RN, BS, MAS, of The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. The roundtable explored communication strategies recommended for parents and healthcare professionals to ensure that the children of patients with cancer are optimally prepared to cope with a parent’s cancer. Panelists included Maya Silver, coauthor of My Parent Has Cancer and It Really Sucks.
The panel agreed that open, honest communication is key for parents with cancer. While expressing that parents must be honest with their children about the cancer diagnosis and the possible consequences of any life-threatening disease, the panel stressed that parents must also be open and welcoming of their children’s thoughts, feelings, questions, and fears, no matter what they are.
Ms Silver, who was 15 years old at the time of her mother’s cancer diagnosis, reviewed her experiences and the feelings of guilt, and reflected on how helpful she would have found communication strategies during her mother’s illness. She also explained how her mother’s cancer taught her to distinguish between the large and small problems of life.
Ms Shockney explained how honest communication about the realities of cancer—even those most negative—does not destroy hope. Throughout the disease process, hope does not go away, but it manifests differently as the disease changes. Hope remains hope, whether it is hope for recovery, a painless death, or the healthy future of one’s children.
How will we address the growing need for efficient care?
A panel of experts addressed the question, “The Affordable Care Act: Where Are We Now?” relative to cancer and its impact, and what it may be in the future. Two payer representatives on the panel, Michael Kolodziej, MD, of Aetna, and Lee H. Newcomer, MD, MHA, of UnitedHealthcare, agreed that overall, cancer accounts for 11% of total spending. Dr Newcomer asserted that we could expect to see that figure grow with time. This is especially distressing given ASCO’s “State of Cancer Care in America: 2014” report, which stated that increased cancer incidence will coincide with a decreasing number of oncologists and growing financial strain on community oncologic practices. The report is the first comprehensive assessment of its kind. It estimates that US cancer cases will increase 45% by 2030, partially due to an aging population and better screening practices. The number of cancer survivors is also expected to increase, from 13.7 million currently to about 18 million by 2030.
There was also discussion of the Patient-Centered Medical Home, an idea that is not new but a concept that has yet to be embraced by the medical community at large. For a complete perspective on the Patient-Centered Medical Home, we encourage you to visit http://connexionhealthcare.com/wp-content/uploads/2013/04/PCMH-white-paper-4-10-13.pdf and download the white paper.