Implementing survivorship care plans for colon cancer survivors

Cancer survivorship care represents a distinct phase of the cancer care trajectory and includes four components of care (Hewitt, Bamundo, Day, & Harvey, 2007). The 2007 Institute of Medicine (IOM) report Implementing Cancer Survivorship Care Planning (Hewitt & Ganz, 2007) recommended providing cancer survivors and their primary care provider (PCP) with a treatment summary and a care plan as a component of survivorship care. More recently, the American Society of Clinical Oncology (ASCO) identified survivorship care plans (SCPs) as part of high-quality cancer survivorship care, enhancing communication and coordination of care between providers and the patient (McCabe & Jacobs, 2008). Since the IOM recommendations were issued, clinicians have struggled to develop and implement SCPs because of time constraints, lack of development reimbursement, and challenges in health information systems (Jacobs et al., 2009; Schrag, 2006). Because knowledge about SCP development, implementation, and outcomes is nascent, evaluation of system- and patient-level processes and outcomes are needed (Earle, 2007). Individuals diagnosed with colon cancer comprise the third largest group of male and female cancer survivors in the United States, with over one million survivors (National Cancer Institute, 2014); therefore, treatment and ongoing surveillance are critical for this high-risk population (Figueredo et al., 2003). To improve outcomes, survivors need to learn about surveillance, health maintenance, and health-promotion recommendations to decrease the risk of recurrence and to facilitate early detection (Desch et al., 2005; Hewitt et al., 2007; Hewitt, Greenfield, & Stovall, 2005). Stage I, II, or III colon cancer is treated with surgery. Adjuvant chemotherapy generally is recommended for stage III and some high-risk stage II colon cancers (i.e., those with obstruction or tumor adherence to adjacent structures) to prevent or delay recurrence and improve survival (Benson et al., 2011). Following recommended surveillance after the completion of treatment has been shown to decrease mortality; however, adherence to this evidence-based schedule is low (Desch et al., 2005; Faul et al., 2012; Faul, Shibata, Townsend, & Jacobsen, 2010; Snyder, Earle, Herbert, Neville, Blackford, & Frick, 2008a, 2008b). Cancer and its treatment can cause permanent body changes (e.g., surgical scarring) and symptoms that may last for years or be permanent (e.g., peripheral neuropathies, diarrhea or frequent bowel movements), along with other physical and psychosocial sequelae that also may need to be addressed (Edwards et al., 2002; Hewitt & Rowland, 2002; Schlairet, Heddon, & Griffis, 2010). To monitor for the recurrence or occurrence of new colon cancers in patients with stage II or III disease, ASCO guidelines recommend routine surveillance with a history and physical examination, a carcinoembryonic antigen blood test, an annual chest and abdominal computed tomography scan, and a colonoscopy within the first three years after diagnosis and then every five years for those at normal risk or as directed by the results (Desch et al., 2005). SCPs provide a communication tool for providers and patients. A number of surveys have been conducted asking PCPs, oncologists, and patients about the use of SCP. Although they all endorse the concept of an SCP (Baravelli et al., 2009; Watson, Sugden, & Rose, 2010), less consensus exists as to who should prepare and deliver it, and when that delivery should occur within the cancer continuum. The optimal timing of SCP delivery from survivors’ or providers’ perspectives has not yet been determined. Given the discordant views of who should administer certain aspects of care to survivors (Cheung, Neville, Cameron, Cook, & Earle, 2009; Cheung, Neville, & Earle, 2010), delivering a copy of the SCP to both the patient and the PCP may foster communication among the oncologist, survivors, and the PCP as well as promoting shared care, adherence to screening, and health promotion. As the projected growth in cancer survivors and shortage of oncologists will most likely shift care back to the PCPs, this becomes increasingly important. In recent analyses of an online SCP, 53% percent of participants reported follow-up care from only their oncologist, 13% from only their PCP, and 32% from both; few participants (12%) received survivorship information (Hill-Kayser, Vachani, Hampshire, Jacobs, & Metz, 2009). Evaluating the process of delivering SCP to the survivor and PCP is needed. JourneyForward™ provides free web-based SCP templates created in collaboration with the National Coalition for Cancer Survivorship; University of California, Los Angeles Cancer Survivorship Center; Oncology Nursing Society; WellPoint, Inc; and Genentech (www.journeyforward.org). JourneyForward SCPs have templates for treatment summaries and surveillance, with a version specifically adapted for colon cancer survivors. Therefore, this pilot study developed, implemented, and evaluated the feasibility, acceptability and satisfaction of the JourneyForward SCP for stage I–III colon cancer survivors from both the survivor and provider perspectives.