At the Sixth Annual Academy of Oncology Nurse & Patient Navigators Conference in Atlanta, GA, Noel Kinard, LMSW, Oncology Social Worker, Gibbs Cancer Center & Research Institute, Spartanburg, SC, discussed how to navigate barriers to care for patients with colorectal cancer and who require screening, how to best support these patients, and the current controversies in colorectal cancer care. “The role of a navigator at the Gibbs Cancer Center & Research Institute is to help patients and families navigate through all phases of the cancer continuum through prevention, diagnosis, treatment, and survivorship,” she said. “We also help educate patients and their caregivers to better understand the healthcare system, and to connect them to resources within our cancer center, within our hospital system, as well as local community and national resources.”
Navigating Barriers to Care
Ms Kinard shared that the main barriers to care for her patient population include transportation and financial toxicities, but that a lack of education on their diagnosis—or misinformation based on someone they know who has had cancer—can lead patients to mistrust their oncology care team. “[Patients] immediately assume that they’re going to have all of the side effects or symptoms related to their cancer, even though it’s a completely different cancer diagnosis,” she said. “Working with patients, providing education and support, and an explanation of what their cancer journey will look like helps to identify and eliminate barriers that may prevent the patient from receiving optimal oncology care in a timely manner.”
Through the Betty Ann Moore Colonoscopy Program at Gibbs Cancer Center & Research Institute, Ms Kinard and her team work with patients who need copay assistance for chemotherapy, radiation, and other expenses related to their cancer diagnosis. Through this program, patients who do not have insurance or financial resources are fully covered for their oncology care. The program provides screening and diagnostic colonoscopies for these patients, as well as follow-up visits, follow-up colonoscopies, and surgeries, if necessary. In addition, the program schedules free transportation for patients who have Medicaid, and the hospital system schedules transportation for all patients. “Being uninsured and underinsured often hinders access to colorectal cancer screening tests, which would detect the disease in an earlier, more treatable stage,” Ms Kinard said, validating the importance of this program. “It’s very important to know the community that you serve…the big issues in our patient population are finance and transportation.”
Ms Kinard explained that when a patient is diagnosed with colorectal cancer at the Gibbs Cancer Center & Research Institute, she and her multidisciplinary team work together to create a treatment plan. “Their case is presented at the gastrointestinal site-specific multidisciplinary planning conference for shared decision-making related to each patient’s unique treatment plan,” she said. Once a physician recommends that a case be presented, Ms Kinard and the multidisciplinary team coordinator provide the pathology and radiology information so that the group of physicians can discuss each case and present the best treatment options. They also review existing treatment guidelines, such as those from the National Comprehensive Cancer Network and University of Texas MD Anderson Cancer Center, and evaluate any clinical trials that the patient may be eligible for. A clinical trial nurse is an important resource who is present at every site-specific multidisciplinary conference.
At the Gibbs Cancer Center & Research Institute Survivorship Clinic, patients with colorectal cancer meet with a nurse practitioner and a navigator at different intervals during and after treatment. The clinic uses a survivorship care plan to record patients’ cancer histories and recommendations for follow-up care. According to Ms Kinard, the survivorship care plan should define the responsibilities of all cancer-related, noncancer-related, and psychosocial providers. “The benefits of survivorship in this patient population include the discussion of long-term side effects of treatment, prevention strategies, and health improvement [with] regard to physical activity and nutrition,” she said. This includes any preventive screenings patients may need, as well as surveillance, coordination of follow-up care by creating a schedule for appointments, discussing patients’ risks for other chronic diseases, and navigating them to the professionals and programs that meet their specific needs.
“We also have a partnership with a therapy group, and we have a grant with the West Gate Family Therapy Institute in Spartanburg, where they will see our patients for 5 visits for free,” she said. Whether they are in active treatment or have completed treatment, many patients experience difficulty in coping with their diagnosis and returning to their regular routines. According to Ms Kinard, referring patients to these counselors has helped address this issue, partly because patients benefit from talking with someone other than a family member, nurse, or physician.
Supporting Patients and Caregivers
In addition to their Survivorship Clinic, the Gibbs Cancer Center & Research Institute recently initiated a supportive care clinic with a palliative care team to encourage patients to seek supportive care. “The supportive care multidisciplinary team approach includes palliative care physicians, nurse practitioners, registered dieticians, oncology social workers, psychologists, and chaplains,” Ms Kinard said.
She stressed that supportive care does not necessarily translate to end-of-life care; the supportive care clinic ultimately serves to help patients manage their symptoms and cope with their diagnosis. Palliative care, hospice, and end-of-life care discussions do occur, however, if they are required for the patient’s specific diagnosis. “Supportive care and palliative care support the entire person, and do not just treat the disease itself. The supportive care team identifies sources of pain and discomfort, and will design a treatment plan tailored to each patient’s specific needs,” she explained.
Ms Kinard also shared some beneficial, patient-friendly resources that have assisted her patients, including the Colon Cancer Alliance (www.ccalliance.org), Fight Colorectal Cancer (http://fightcolorectalcancer.org), and CancerCare (www.cancercare.org). These organizations post many educational pieces on their websites that patients can understand. In particular, CancerCare provides counseling with oncology social workers via phone calls, Internet, or in person, as well as support groups and financial and copayment assistance.
Controversies in Colorectal Cancer Screening
One issue in colorectal cancer screening that Ms Kinard has observed involves the Removing Barriers to Colorectal Cancer Screening Act of 2012, which sought to eliminate cost-sharing for Medicare beneficiaries receiving a colonoscopy, even if a polyp is removed. Under the current Medicare policy, routine colonoscopies are considered a free preventive service; however, cost-sharing can be a deterrent for patients who receive a recommendation for screening. For example, patients will often receive a screening colonoscopy that becomes a diagnostic colonoscopy, and then they receive bills for a preventive service that was supposed to be free under their Medicare coverage.
Because cost-sharing obligations create a barrier to important preventive services and screenings, the Affordable Care Act, too, sought to address patients’ rights and the use of recommended preventive services by partially eliminating Medicare beneficiary cost-sharing. These unexpected costs could be a barrier to a life-saving test. “Unfortunately, beneficiaries continue to be exposed to costs if polyps are found and removed,” Ms Kinard explained. “If patients think that there’s going to be any costs, then they’re not going to do it. This is a big barrier that really does deter patients from getting a colonoscopy when they’re supposed to.”