- Top of page
- MATERIALS AND METHODS
- FUNDING SUPPORT
- CONFLICT OF INTEREST DISCLOSURES
There are 13.7 million people with a history of cancer currently living in the United States, 64% of whom have survived at least 5 years. Offsetting the benefit of long-term survival, many cancer survivors face significant health issues, such as ongoing risks of second cancers, disease recurrence, and late effects (consequences of the cancer and its treatment).[1-6]
In 2005, the Institute of Medicine (IOM) recognized that cancer survivors may experience an inadequate transition from oncology-focused care to primary care. The roles of oncology and primary care providers remain ill-defined after treatment is complete.[7, 8] Often survivors continue to receive follow-up care from their oncology providers, resulting in the neglect of their general health. To facilitate the improved coordination of posttreatment care between oncology and primary care providers, the IOM proposed the use of survivorship care plans (SCPs). SCPs are personalized documents presented to cancer patients at the end of treatment that summarize key aspects of cancer treatment and recommend appropriate ongoing medical care and self-management. The purpose of the SCP is both to educate survivors and to create a portable document that can be shared with primary care providers to facilitate coordinated care. Survivors and primary care providers have responded positively to the concept of SCPs,[10-25] survivorship experts have widely endorsed SCPs, and multiple professional societies and accrediting agencies have encouraged their use.[1, 8, 26-32] Beginning in 2015, the American College of Surgeons Commission on Cancer will evaluate the use of SCPs as a metric of quality of care.
Persistent barriers to SCP use have been identified by oncology providers, who are faced with selecting or creating a template, compiling information (often from multiple sources) regarding survivors, and discussing and distributing the SCPs. Oncology providers generally have positive feelings about SCPs, but report some hesitation in integrating them into clinical practice.[10, 15, 34, 35] Indeed, the implementation of SCPs nationwide has been slow, with a recent report demonstrating that fewer than one-half of National Cancer Institute (NCI)-designated cancer centers use SCPs for their survivors of breast or colorectal cancer. Among community and academic cancer programs in the southeastern United States, fewer than 25% of providers in each program use SCPs for their survivors.
A potential problem for the implementation of SCPs is the lack of evidence of a benefit with their use. To the best of our knowledge, the only randomized trial to date that investigated outcomes after SCP use found that among patients with early-stage breast cancer, receiving an SCP was not associated with a change in cancer-related distress, quality of life, and other health outcomes. These findings may discourage oncologists from embracing the use of SCPs. We hypothesize that there are 2 major barriers to the widespread uptake of SCPs: the lack of resources to integrate SCPs into busy clinical practices and buy-in from oncology providers. The aim of the current study was to assess community oncology providers' opinions about SCPs, including perceptions of the importance of SCPs, the responsibility of oncology providers to provide SCPs, barriers to SCP use, and the usefulness of the implementation strategies used at their practices. Community oncology providers are critical to understanding SCP plan use, because the majority of patients with cancer receive care in community settings. It is important to note that we included nonphysician oncology providers who often are responsible for SCP use.[39-42] The oncology providers in our survey came from hospitals within the NCI Community Cancer Centers Program (NCCCP), an NCI-funded program of cancer centers at community hospitals in the United States. The NCCCP was developed to achieve quality and research objectives in cancer care, including the identification of evidence-based survivorship care services. Having committed to the development of SCPs as part of the NCCCP program deliverables, these oncology providers are in a unique position to provide insight into the use of SCPs.
- Top of page
- MATERIALS AND METHODS
- FUNDING SUPPORT
- CONFLICT OF INTEREST DISCLOSURES
Although oncology leaders, survivorship experts, survivors, and primary care providers all express positive sentiments about SCPs, oncology providers are not uniformly providing them. This is true of our sample of community-based oncology providers in NCCCP hospitals and it has been observed at NCI-designated cancer centers as well. Recognizing the upcoming American College of Surgeons Commission on Cancer requirement, and the finding that NCCCP providers have an incentive to promote quality improvement in survivorship care, one might hypothesize that providers in these 2 settings would be early adopters of strategies to implement the use of SCPs, suggesting that implementation may be even lower at other practices. The results of the current study provide further insight into why there might still be limited use of this intervention among oncology practices.
Having adequate and appropriately trained staff to complete the SCP is critical for oncology practices. Delegating a single person to complete the SCP was reported as being helpful to 89% of the participants who do so, and multiple participants suggested the potential usefulness of a survivorship team approach. Nonphysician providers, suggested by 2 participants, are frequently used in survivorship care and often fill an important role in SCP implementation.[39, 41, 46]
SCP use also requires time. Prior studies estimated the time to complete an SCP is between 1 and 2 hours.[16, 19, 45] The results of the current study suggest a less time-consuming process for most providers, although there was significant variation. It is unknown whether providers in the current study are completing entire SCPs or more brief summaries of 1 or more topics. Regardless, the time to complete an SCP was listed as a challenge by 61% of respondents who provide SCPs and as a potential challenge by 67% of those who do not provide SCPs. The time needed to discuss the SCP with the patient also poses a problem for providers, although our findings suggest that this challenge is less significant.
Similar to other published surveys of oncologists, the majority of both oncologists and nonphysician oncology providers in the current study believe that SCPs are somewhat or very important to both survivors and their primary care providers.[15, 17] However, providers perceive that SCPs provide greater benefit for primary care providers than for patients, with > 85% reporting that each topic (diagnosis, treatment, recommended ongoing care, or aspects of oncology care follow-up) was very important for primary care providers and fewer than two-thirds reporting that each topic was very important to patients. It is possible that this perception arose in part from the technical presentation of the American Society of Clinical Oncology survivorship care plans, which likely are more relevant to clinicians than to patients. Ironically, SCPs were conceptualized as a patient-centered intervention that could enable survivors to manage their own health and be informed participants in their ongoing health care. If oncology providers doubt the relevance of SCPs for survivors, they may be less likely to offer SCPs to survivors and, even if they do, the content may be directed more toward primary care providers than the survivors themselves.
The perceived minimized relevance of SCPs for survivors is also troubling in light of the impending workforce shortages in both oncology and primary care.[28, 38, 47-50] Oncology practices will likely experience increasing pressure to stop seeing cancer survivors, and survivors may have difficulty seeking ongoing primary care. Survivors will need to take an active role in seeking informed care, whether from an oncology or primary care provider (or both), and a survivor-centered SCP is critical to assisting in their self-management and assuring continued comprehensive survivorship care.
We found ambivalence about whether oncology providers should be responsible for providing SCPs. Just < 67% of respondents believed that oncology providers were definitely responsible for providing information to their patients, and approximately one-third reported mixed feelings about oncology providers being responsible. Despite these mixed feelings, oncology providers are in the best position to disseminate personalized information regarding diagnosis and treatment, the aspect of SCP completion that likely takes the most time. In contrast, although oncology providers are in the best position to provide information about what follow-up care is recommended, some of this information may not differ within subgroups of cancer survivors and therefore need not be personalized for each patient. For example, although recommendations for dual-energy X-ray absorptiometry scans depend on specific criteria and require personalization, many cancer-specific SCPs provided by the American Society of Clinical Oncology offer a generic list of ongoing tests and visits with recommended frequency, making it unnecessary for oncology providers to document this information for every survivor's SCP.[51-54] Similarly, a description of what aspects of care the oncology provider intends to oversee likely does not vary widely, if at all, between patients; for example, whether an oncologist takes responsibility for surveillance colonoscopy likely does not vary between survivors of colorectal cancer. Despite some ambivalence concerning whether they should provide this information, of all the parties involved, the oncology providers who complete and disseminate SCPs are in the best position to clarify their preferred division of responsibilities. If generic information can easily be entered into SCPs, resources can be directed toward the more time-consuming entry of patient-specific data.
Comments by respondents confirmed that although oncology providers find SCPs to be a good idea, there are also mixed feelings regarding the benefit of these documents. A minority of respondents use the strategies we listed for implementing SCPs. Even considering that some respondents may be unaware of how SCPs are implemented in their practices, the rates of use (12%-40%) are low. Some strategies, such as integrating SCPs into an electronic record, are difficult to enact. However, simpler strategies, such as using existing SCP templates or limiting the content of the SCP to a brief summary, are rarely in place. Because there is not yet evidence regarding which elements of SCPs improve outcomes, choosing concise templates and limiting content can be challenging. However, choices concerning content may be informed from a growing body of literature on survivor and primary care provider needs, which emphasizes the salient preferences for information among survivors (particularly information on self-management, signs of disease recurrence, and coordination of providers) and primary care providers (including information about coordination of care, recommendations for surveillance, and information about late effects).[10, 21, 55-57]
Although it is a less simple strategy to enact, automatically populating SCPs from the electronic health record could capitalize on data already being entered for clinical use and simplify SCP use in the long run. With an electronic platform linked to medical records, patient-specific information that could be used to direct ongoing care (such as medical data relevant to whether dual-energy X-ray absorptiometry scans are necessary for survivors of breast cancer) as well as more general guidelines for follow-up could be directly imported into the SCP, thereby minimizing the need to manually enter information. Some data relevant to treatment and diagnosis may already be captured for cancer registries. An electronic health record could facilitate the use of these data for the SCP. In the current study, only 16% of respondents who provide SCPs have them integrated into the electronic health record, suggesting this is one way to facilitate the implementation of SCPs.
Finally, there were significant differences between the perspectives of oncologists and nonphysician oncology providers. Oncologists were less likely than their counterparts to believe that receiving an SCP is important, both to survivors and their primary care providers. Oncologists were also less likely than nonphysicians to believe that oncology providers are definitely responsible for providing SCPs. These differences underscore the increased involvement of nonphysician clinicians in providing survivorship care (and SCPs).[39, 41] Although physicians may be focused primarily on treatment and surveillance, nonphysicians may have a broader perspective on comprehensive survivorship needs, including the need to communicate about ongoing care with patients and primary care providers.
The current study has limitations. Respondents may have been unaware of who else in the practice provides SCPs. One potential ramification of this is that providers who do not use SCPs may not be aware of the challenges involved. To explore this possibility, we conducted a sensitivity analysis of the barrier items, limiting the analysis to the 128 providers who themselves provide SCPs. Among respondents who personally provide SCPs to their patients, the same patterns of barriers were found to be present as with the entire sample, with personnel and time to complete the SCP endorsed by the highest percentages of respondents, suggesting that those who do not personally provide SCPs still understand the challenges involved in their implementation. It is important to include the responses of all participants, regardless of SCP use, because the perception of barriers may be responsible for whether providers use SCPs. Finally, the list of barriers and strategies that we presented in our questionnaire may not be complete. However, write-in responses reiterated many of the barriers and strategies presented, and a few new barriers and strategies were suggested.
To our knowledge, this is the first study to explicitly describe barriers to SCP use, strategies for SCP implementation, and buy-in from oncology providers. With a high response rate (70%) from both nonphysician and physician oncology providers at community hospitals across the United States, we found that resource issues to create information-rich SCPs pose a significant barrier to their creation. Despite broad approval of SCPs by survivors and primary care providers, implementation will likely remain limited unless resources become available to overcome significant barriers. Existing strategies to reduce burden are rarely used, and oncology providers may benefit from training focused on implementation strategies, as some respondents suggested. Community cancer centers aiming to provide SCPs (perhaps in response to American College of Surgeons Commission on Cancer accreditation standards) can help by working to enable the linkage of SCPs to electronic medical records. More critically, we found limited buy-in for SCP use, particularly in terms of the perceived value for the survivor and the idea that oncology providers are responsible for SCP use. Addressing practical challenges may not be enough to earn the buy-in of oncology providers. Ultimately, oncology providers are key stakeholders who do the work involved in providing SCPs to survivors, and they need to believe that this work is worth the effort. Proponents of SCP use may benefit from extending education about the information survivors and primary care providers want from SCPs, emphasizing the importance of the SCP as a tool to improve care coordination.