The use of SCPs has wide support, and survivors and their providers feel they would benefit from SCPs. Despite the enthusiasm for SCPs, our review found that fewer than half of NCI-designated cancer centers provide SCPs to their breast or colorectal cancer survivors. Even within these institutions, most survivors of these cancers do not receive SCPs today. Providing SCPs requires financial resources, time, and institutional commitment. It seems clear that these barriers to the implementation of SCPs will need to be addressed before SCPs are more widely adopted.
We found similarities among SCPs between institutions, which may reflect an implicit consensus on the essential elements to be included in SCPs. Cancer-specific information such as the location and size of the tumor is commonly reported for both cancers, as well as hormone receptor status for breast cancer. Similarly, recommendations to pursue timely surveillance (for second primary cancers and recurrences) and screening for new cancers appeared in almost all SCPs, suggesting that this is universally deemed essential for inclusion in SCPs.
A surprising finding was the limited extent to which SCPs delineated a division of responsibilities between providers. This was particularly salient for screening for second cancers: despite 84% of breast SCPs recommending screening for non-breast cancers, only 42% of SCPs noted which healthcare provider was responsible for screening. Part of the IOM's goal for SCPs was to facilitate the transition from acute cancer care to ongoing preventive care, but existing SCPs appear to have failed to address this issue explicitly.
SCPs rarely included information about legal and financial resources, genetic testing, and screening for relatives, even though these components were also recommended in the IOM report. Although the IOM recommends providing SCPs to patients treated for advanced disease and reporting indicators of treatment response, information about treatment response was universally excluded, and institutions reported that they generally do not provide SCPs to patients with advanced disease.
There was a lack of consistency between the SCPs regarding their inclusion of information about what survivors can expect after treatment completion, including late effects, signs and symptoms of recurrence, and possible psychosocial effects of cancer survivorship. There was also variation in whether healthy behaviors were described and whether external resources for survivors were listed.
We hypothesize that the variation between SCPs is partly due to a difference in the perceived audience. Although the SCP is thought to be a communication tool for both survivors and their primary care providers, satisfying both audiences in one document may prove difficult. Details about legal resources and listings of cancer-related resources, for instance, may obfuscate important medical details for primary care providers. Correspondingly, providing medical details, such as the dosage of chemotherapeutic agents, may confuse survivors who do not know how to act upon such details.
Another cause of variation in content may be due to a lack of clarity within the IOM framework. The IOM suggests including information relevant to patients with advanced disease, which causes some ambiguity about when a SCP should be provided and what treatment history should be included for these patients. Also, some parts of the IOM framework were vague or difficult to understand, such as “Need for ongoing health maintenance/adjuvant therapy,” and may be difficult for clinicians to interpret. Further, the IOM framework has a very wide scope of recommendations for preventive measures, ranging from surveillance for second primary cancers, screening for unrelated cancers, prevention of conditions for which cancer survivors are at high risk, prevention and treatment of psychosocial issues, and prevention of conditions for which cancer survivors are not at higher risk. Beyond these medical recommendations, the IOM framework includes suggestions for other types of support, such as legal and financial resources. While some SCPs addressed most of these recommendations, most SCPs only addressed a small subset. A careful refinement of the elements of the IOM framework may help institutions create SCPs that address only the most important and salient recommendations.
Our review of SCPs is limited by our choice of cancer sites and the sample of institutions. The adoption and content of SCPs for breast and colorectal cancer may not represent SCPs for other cancers. Likewise, NCI-designated cancer centers may not be representative of all cancer programs and practices. However, they may be at the forefront of adopting additional support services for cancer patients. Even in this context, only a minority of these institutions had SCPs in place for colorectal or breast cancer.
Given the sporadic dissemination of SCPs even within institutions, it is possible that some respondents were unaware of SCPs in use at their institutions. Thus, although we attempted to contact key leaders in both oncology services and survivorship programs, we may have undercounted institutions that provide SCPs to their breast and colorectal cancer survivors.
By evaluating only templates for SCPs or de-identified sample SCPs we may have lost information about the true content of SCPs that are given to patients at these institutions. A further limitation is that individual SCPs may appear to lack certain information that may be addressed comprehensively in conversations during office visits or in other printed materials. After all, the vast majority of institutions reported offering additional printed educational information, and some of this material may include some of the components the SCPs appear to lack. Correspondingly, by using the IOM framework as the standard for evaluation, we did not include in this review features that were included in SCPs that went beyond the scope of the IOM framework.
Although the use of SCPs for breast and colorectal cancers at NCI-designated cancer centers is not yet widespread, adoption appears to be underway at many of these institutions. The content of SCPs may be expected to vary to suit the needs of individual institutional settings, but the next challenge is to evaluate and refine the IOM framework and identify the essential components of SCPs. Refining the framework may, in turn, facilitate widespread adoption of SCPs.