We identified informational needs of PCPs who care for CRC survivors. When presented with 45 topics included in survivorship care plans, PCPs generally found them important but lacking when caring for CRC survivors. More than three quarters of the topics were deemed very important by at least half of participants, and few topics were deemed unimportant, suggesting that the IOM framework includes information that is critical to PCPs.
Surveys of PCPs have typically found some discomfort in taking on care of cancer survivors, either in the capacity of shared care with oncology providers or as sole providers of post-treatment care.11-14
This may result from limited communication with oncology providers about patients’ treatment.13
Our study found that providers rarely had complete information about CRC survivors’ diagnosis and treatment, a problem which PCPs have reported in other studies (although sometimes to a lesser degree).11,15
Further, most providers in our study valued communication regarding which specialty should assume responsibility for specific aspects of treatment, but only one-fifth ever received information on delineating specific aspects of care between the PCP and the oncology provider.
PCPs have previously noted a lack of training on survivorship issues.11
Providers in our study reported a need for information about multiple facets of CRC follow-up. Although guidelines for CRC survivorship care are put forth by both the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN), they are limited in scope, focusing on monitoring for recurrences and second CRCs and not on addressing medical and psychological late effects.16-17
They also are not directly disseminated to PCPs, who may not keep abreast of cancer society guidelines. Indeed, previous studies of PCPs have found limited awareness of guidelines and other information to inform follow-up care for cancer survivors.11,13
The use of survivorship care plans may ameliorate both poor communication and limited dissemination of survivorship information. Despite the fact that survivorship care plans were proposed in 2006, fewer than a third of study participants ever received written recommendations for ongoing care, and fewer than a quarter ever received information on what aspects of care PCP and cancer care providers are responsible for. These are key elements of survivorship care plans, and our study demonstrates a critical gap between the IOM recommendations and the actual practice of survivorship care. This gap has been described elsewhere, as implementation of survivorship care plans lags behind recommendations.18
Respondents who received written recommendations for ongoing care and descriptions of responsibilities of each provider generally found this information useful. Further, explicit coordination of care with regard to monitoring for CRC recurrence was deemed very important by 98% of respondents. Of those who never received information in survivorship care plans, nearly all reported that it would be useful. Previous studies have found that PCPs are receptive to survivorship care plans as tools to improve coordinated care for cancer survivors.11-12,15,19-21
Notably, a small proportion of providers in our study reported that the name and dose of chemotherapy drugs and the dose of radiation were very important, although a substantial proportion of respondents (41-46%) felt they did not have enough information about these topics. This discrepancy may be explained by at least half of respondents finding these topics at least somewhat important. (Data not shown.) These treatment details may be the most relevant risk factors predicting the occurrence of important late effects. However, reporting treatment may be the most burdensome part of completing a survivorship care plan. A simplified strategy for presenting information in survivorship care plans would entail limiting the presentation of treatment details (which PCPs find less important than other information) but providing clear guidance about how to prevent, detect, and manage the late effects of treatment.
Our study had a limited response rate, although it is similar to the response rate (37%) achieved in a similar internet-based survey of providers within PBRNs.22
In that study, an option of a mailed paper-based survey improved response rates, but we opted to limit our survey to internet-based administration to reduce network and clinician burden. It is possible that those who did not respond to our internet-based survey but would have responded to a paper-based survey have different informational preferences, especially regarding the format of receiving information, than our sample. It is also possible, more generally, that our sample participants were more interested than nonresponders in the challenges of caring for CRC survivors or felt a stronger need for information, potentially biasing our results toward demonstrating greater informational needs. The widespread agreement across issues raised in this study suggests that even if there were a bias, a pattern of strong needs and preferences for information would remain. This study was not powered to identify predictors of preferences for information, which may vary by provider characteristics, such as experience with CRC survivors. This survey relied on providers to recall their experiences and report estimates, and we were unable to verify responses. The three sites chosen for this study may not be generalizable to all PCPs. However, we have no reason to believe that participants were more or less informed about CRC or interested in receiving survivorship information than PCPs elsewhere.
Our study focused on the use of survivorship care plans as static documents communicating information from the oncologist to the PCP, as described in the IOM report.1
However, coordination may be enhanced with the use of dynamic survivorship care plans that oncologists update over the course of treatment and follow-up, thereby keeping PCPs informed while the patient is under the oncologist's care.23-24
At the same time, PCPs may wish to inform the oncologist about changes in the survivor's health status, the provision of testing, or other general preventive measures. Future studies should examine whether a dynamic survivorship care plan would be useful and feasible for PCPs, CRC survivors, and oncologists.
This is the first published study that we are aware of to assess the potential usefulness to PCPs of the IOM framework for survivorship care plans for CRC survivors. Our sample of PCPs, which includes physicians and non-physician providers in academic and community settings in multiple distinct locations, represents a wide array of practitioners. Despite this diversity, there is widespread agreement that providers would appreciate and use the information in the IOM framework. There are deficiencies in communication about survivors’ treatment history and specific gaps in knowledge about CRC survivorship, both of which should be addressed in survivorship care plans created for CRC survivors.
Findings from this study suggest that PCPs want comprehensive CRC survivorship information, but before calling for the development of lengthy CRC survivorship care plans, further research with oncologists must assess whether creating such detailed documents is feasible and deemed an important use of clinical resources. Our study still provides a strong evidence base for the creation of a CRC survivorship care plan that responds to the needs of PCPs. The development of a new CRC survivorship care plan will provide a basis for future research evaluating whether survivorship care plan use resolves deficiencies in care for CRC survivors. Specifically, studies need to address whether survivorship care plans facilitate coordination of care, improve quality of care, and help PCPs feel more comfortable in providing care to CRC survivors.