This was a descriptive study of colon cancer survivors treated at a National Cancer Institute (NCI)–designated comprehensive cancer center in the southeastern United States and their PCPs conducted over one calendar year.

Patients with stage I, II, or III colon cancer who had completed treatment and were within the first year of diagnosis were eligible. Participants also had to be older than 21 years and able to read and speak English.

Institutional review board approval was received, and potentially eligible patients were identified at the weekly gastrointestinal (GI) tumor board meeting where all patients newly diagnosed with colon cancer are presented. Their electronic medical records were screened for eligibility and then followed on a weekly basis for appointments. To recruit other potentially eligible colon cancer survivors, the study program manager reviewed weekly schedules of the 11 GI oncology providers. Once a potentially eligible patient was identified, an SCP was developed using the JourneyForward template by an oncology certified nurse (OCN^®) trained in its use. Any discrepancies or questions were reviewed by the medical oncologist on the team. The OCN kept a log of how long it took to complete each SCP and any issues that arose in preparing it. The nurse practitioner (NP) for the surgical or medical oncology team was notified the week the patient was scheduled for a follow-up appointment and was given the patient’s SCP. The SCP draft was reviewed and finalized by the NP and then reviewed with the patient.

After completing the SCP review with the patient, the NP briefly described the study and requested permission for a follow-up contact by study personnel; study personnel then obtained informed consent when first contacting the patient. SCPs were delivered 6–12 weeks after completion of the patient’s treatment or at any scheduled return visit from 3–12 months after diagnosis. The SCP visit was billed using length of time at a level four or five evaluation and management code with appropriate documentation for Centers for Medicare and Medicaid Services reimbursement (Schrag, 2006). The NP kept a log of the visits, including length of time to deliver the SCP verbally and in print, as well as any issues regarding the tool or visit. The study personnel then contacted the patient at home and completed the study measures by phone two weeks after the visit; patients were sent a $20 gift card and a copy of NCI’s Facing Forward: Life After Cancer Treatment.

A paper copy of the SCP was sent by mail to the PCP on record along with a cover letter and a review article (Ganz, 2009) on the care of adult cancer survivors (Mayer, Gerstel, Leak, & Smith, 2012). Follow-up by the program manager with the PCPs was conducted within two weeks of SCP delivery with a mailed followup survey. A reminder was sent two weeks later if the survey had not been returned. Return of the survey reflected consent from the PCP.

Seventy-five patients were screened, 49 patients were eligible and had an SCP developed, and 34 SCPs were delivered; a total of 28 survivors and 15 PCPs participated in this study (see Figure 1). Fifteen patients were considered lost to follow-up as they did not receive their SCP; 28 of those who received their SCP agreed to participate in the study. Of the 28 survivors, 11 had surgery only and 17 had surgery and chemotherapy (see Table 1). Surgery-only survivors were predominantly female, older, Caucasian, married, and had a high school education. Survivors who received surgery and chemotherapy were more likely to be male, younger, and college educated. PCPs were female, physicians, younger than 50 years, and in practice an average of 23 years (see Table 2).

It took the OCN an average of 49 minutes (SD = 27, range = 30–90) to complete a surgery SCP and 90 minutes (SD = 48, range = 45–210) to complete a surgery and chemotherapy SCP. Although the authors’ institution uses electronic health records, chemotherapy was documented in separate electronic and paper records, which meant accessing multiple physical and electronic sites to complete the SCP. In addition, clinic notes did not consistently or clearly document side effects and changes in chemotherapy drugs or dosing, which needed to be included in the SCP, accounting for the increased preparation time compared to the surgeryonly participants.

A total of 34 SCPs were delivered to patients; 6 were not delivered because of missed appointments or extremely busy clinics on the day they were to be delivered. Delivery took an average of 16 minutes (SD = 2, range = 15–20) for the surgery SCP, and 26 minutes (SD = 2.2, range = 25–30) for the surgery and chemotherapy SCP during a regularly scheduled surveillance visit. At the end of the study, the NPs did not feel an SCP added time to the regular visit, but provided more structure when reviewing the information contained within the SCP.

Almost all survivor participants found the SCP easy to use and understand (see Table 3). Although some thought they would need help using it, the SCP received high satisfaction (X‒ = 5, SD = 0.56) and usability (X‒ = 4, SD = 0.38) ratings from survivors. PCPs rated the usability of the SCP highly (X‒ = 4, SD = 0.5) but commented that it was too long for their use (see Table 4). Written comments from patients and PCPs were reviewed by the study team; all were positive and related to the reassurance the written plan provided.

Eighteen participants thought the SCP should be delivered either before the end or within the first three months of completing treatment. In addition, survivors were highly satisfied (5.4/6) with their SCP visit. Twenty-seven survivor participants felt enough time was spent on their visit, and that they had things explained to them, and 26 felt that were encouraged to ask questions.

Many patients with cancer find the transition from acute treatment to extended survival difficult (Hewitt et al., 2005). Survivors may not know the significance of surveillance, in particular, what tests need to be done, who to see, or how often to go for follow-up visits once treatment is over. Many do not receive the recommended follow-up care for colon cancer (Cooper & Doug Kou, 2008; Davies et al., 2012; Earle & Neville, 2004).

This study was conducted for one type of cancer in a single institution. Attrition at each step of the process demonstrates the difficulty in conducting studies mirroring clinical practice (for example, one of the two NPs had maternity leave during the study and patients were missed during this time). Because the study was limited to one year, researchers were not able to follow the patients and providers over time to measure outcomes such as adherence to the surveillance guidelines. Although these issues limit generalizability, the study did provide an in-depth look at the logistics behind the development and implementation of an SCP. The greatest barriers in the development and implementation of SCPs were identifying the patients and delivering the SCP during busy clinical practices. If electronic health records could be developed and programmed to populate the SCP and alert the provider when a patient might be due for an SCP, much of the development time could be reduced, making this a more feasible intervention.

A number of studies have been conducted on patients’ and PCPs’ preferences and experiences (Kantsiper et al., 2009; Lawler, Spathonis, Masters, Adams, & Eakin, 2011; Lewis et al., 2009; Nissen et al., 2007; O’Malley & Cunningham, 2009; Rowland, 2008; Skolarus et al., 2011). Faul et al. (2012) conducted in-depth interviews with seven colon cancer survivors who had received an SCP and their respective oncology providers from one setting (Faul et al., 2012). The survivors found the printed SCP versions very helpful and used them as a guide for care, many sharing with others and bringing them to appointments. Survivors also saw value in the SCP as a tool to help reduce duplication of testing, addressing their fear of recurrence and providing peace of mind. Oncology providers generally were supportive but did raise concerns about the logistics of their development, sustainability, and impact on outcomes (Potosky et al., 2011). PCPs may not feel they have the information they need to provide survivorship care to colorectal cancer survivors (Salz, Oeffinger, Lewis, et al., 2012; Salz, Oeffinger, McCabe, Layne, & Bach, 2012); the SCP could be one means to deliver that information.

Although still nascent, a growing number of studies are evaluating the outcomes of SCP delivery (Grunfeld et al., 2011; Hershman et al., 2013; Nissen, Tsai, Blaes, Swenson, & Koering, 2013). Grunfeld et al. (2011) conducted a randomized, controlled trial of 408 Canadian women with breast cancer at a mean of 35 months after diagnosis. The women either acted as controls and received a discharge visit prior to returning to their PCP, or they were in the intervention group and received an SCP (Grunfeld et al., 2011). The only significant differences between the two groups were found in knowledge of follow-up care. Those who received the SCP significantly identified that their PCP was responsible. The researchers did not describe the process or time needed to complete the SC, but they were delivered by a nurse during a 30-minute session during the discharge visit. Hershman et al. (2013) randomized women with breast cancer to receive the NCI’s Facing Forward: Life After Cancer Treatment booklet with or without meeting an NP and nutritionist who delivered an SCP six weeks after completing treatment. Women in the intervention group had less worry at three, but not six, months afterward. Again, the researchers did not describe the process or content of SCP development. Nissen et al. (2013) sent treatment summaries by mail to colorectal and breast cancer survivors who were eight years post-diagnosis, and then surveyed them 17 months later. Although knowledge about diagnosis did increase, it was still very low. Again, no details were given about SCP development.

Other studies have looked at variations within practice, such as the percent of oncology providers or programs reporting developing and delivering SCPs and of PCPs who have received them (Howell et al., 2012; Merport, Lemon, Nyambose, & Prout, 2012; Salz, Oeffinger, McCabe, et al., 2012). Adoption of the 2005 IOM recommendation has been slow (Birken, Mayer, & Weiner, 2013; Chubak et al., 2012; Stricker et al., 2011; Stricker, Jacobs, & Palmer, 2012), which may, in part, be because of barriers to development and lack of significant benefits in patient outcomes (Grunfeld & Earle, 2010; Hershman et al., 2013; Stricker et al., 2011). However, the American College of Surgeon’s (2012) Commission on Cancer has adopted a standard that requires that by 2015,

More work needs to be done to improve the development and implementation process of SCPs to increase adoption (Salz, Oeffinger, McCabe, et al., 2012; Wolin, Colditz, & Proctor, 2011). Electronic health records may lessen the development time of SCPs but other process issues still need to be addressed, such as systematically identifying eligible patients, the timing of delivery, and the provider responsible for delivering the SCP to the patient and sharing it with the PCP. Institutional cancer committees may champion or provide support to attend to this process. As SCPs become disseminated more widely, survivor outcomes may be measured. For example, do SCPs increase adherence to surveillance recommendations? Do they reduce redundant testing or promote more evidence-based surveillance? Is it the SCP that makes the difference or the survivorship visit when it is delivered? Lessons learned about implementation of the SCP from this study also can be used for implementation and evaluation in other settings or with other types of cancer. Given the new Commission on Cancer’s standard on SCPs, these issues will need to be addressed.

Before asking questions about effectiveness, SCPs must be developed and implemented. Long-term studies on the use of SCPs are needed to measure patient and provider outcomes (Haq et al., 2013; Hill-Kayser et al., 2013). As more institutions move to electronic health records, there may be ways to semi-automate the development of SCPs to facilitate completion in a more streamlined manner. However, systems will still need to be in place to identify, track, and evaluate their implementation in cancer programs.

Nurses will be instrumental in addressing the development and implementation of SCPs in cancer practices. Participation in cancer committees also will be necessary to raise system issues to make this practice possible for the majority of patients ending their cancer treatment. Systems that identify eligible patients and how to develop, deliver, and document this activity will be important in meeting this Commission on Cancer standard.

This pilot study developed, implemented, and evaluated the feasibility, usability, and satisfaction of the JourneyForward SCP from both the survivor (n = 34) and provider (n = 15) perspectives. A number of issues prevented all of the developed SCPs from being delivered. For example, it took an average of 49 minutes to complete a surgery SCP and 90 minutes to complete a surgery and chemotherapy SCP. Survivors also preferred receiving the SCP just before treatment ended or within the first three months. The SCPs were well received by the survivors and their PCPs. This process needs to be streamlined to encourage more widespread adoption. Only then will researchers determine whether SCPs help facilitate care coordination and communication to improve the quality of cancer care (Parry, Kent, Forsythe, Alfano, & Rowland, 2013).