The transition from cancer treatment to follow-up care with primary care providers (PCPs) can be difficult for the nearly 14 million cancer survivors in the United States [1]. Survivors have unique physical, psychological, social, and spiritual health needs. Optimal survivorship care includes (1) prevention and detection of new cancers; (2) surveillance for cancer spread or recurrence; (3) intervention for consequences of cancer and its treatment; and (4) coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met [2]. Optimal care may be compromised by PCPs’ and oncologists’ conflicting perspectives on their roles in survivorship care. Conflicting perspectives among PCPs and oncologists may result in the duplication or omission of prevention, detection, surveillance, or treatment services [3]. Survivors often feel poorly educated regarding psychological, social and sexual health issues [4] and their risk for recurrence [5], and they are often dissatisfied with care following cancer treatment [6].

To mitigate these concerns, the Institute of Medicine (IOM) recommended survivorship care plans (SCPs) as instruments to educate survivors and providers regarding the type of cancer, treatment and services received, and timing and content of recommended follow-up care [2]. Many professional societies now require cancer programs to use SCPs (i.e., develop and deliver to survivors and PCPs) [7]; however, barriers may impede cancer programs’ SCP use [8].

Empirical evidence of the prevalence and barriers to SCP use is limited. Estimates of SCP use prevalence are often tangential to primary research findings, and are from a small subset of cancer programs [8, 9], a single state [10], or a very small number of cancer programs [11-13]. Existing estimates provide limited information regarding the characteristics of cancer programs that use SCPs, such as their location, annual incident cancers, program type, or membership in professional societies. Evidence of barriers to SCP use often relates to the substantial resources required for SCP use [8, 9, 12]. The extent to which SCP use is impeded by other barriers, such as lack of readiness, management support, or a positive climate for change, remains unclear.

We address these gaps in the literature by assessing the prevalence of SCP use using a survey of cancer programs with a wide range of characteristics including location, annual incident cancers, professional society memberships, and program type; assessing a wide range of barriers to SCP use, such as lack of readiness, management support, or climate for change; and assessing relationships between SCP use and (1) barriers and (2) cancer program characteristics. Understanding patterns in prevalence and barriers to SCP use may improve efforts of quality improvement organizations and professional societies to educate providers regarding the use of SCPs.

respondents’ cancer programs had more annual incident cancers than other South Atlantic US cancer programs (p<.001). Respondents underrepresented community hospital cancer programs (p=.01) and National Cancer Institute-designated comprehensive cancer programs (p=.03); they overrepresented teaching hospital cancer programs (p<.0001). Respondents were more likely to belong to the Association of Community Cancer Centers (p=.04) and Commission on Cancer (p=.02) than other South Atlantic US cancer programs. There were no other differences between respondents and other South Atlantic US cancer programs.

Of the 23 respondents, seven were registered nurses (31.8%); six were administrators, such as service line directors (27.3%); three were nurse practitioners (13.6%); two were physicians (9.1%); two were PhDs (9.1%); and two were social workers (9.1%). Respondents reported an average of 1859 annual incident cancers (range: 1129-3248). Cancer program types included community hospital comprehensive cancer programs (52.4%), NCI-designated comprehensive cancer programs (9.5%), and teaching hospital cancer programs (38.1%). Respondents’ cancer programs participated in professional societies including the American Hospital Association (13.6%), Association of Community Cancer Centers (68.2%), and Commission on Cancer (95.5%).

This study’s objective was to describe the prevalence and barriers to the use of SCPs, an instrument intended to educate survivors and patients regarding survivors’ transition from cancer treatment to follow-up care, and to assess relationships between SCP use and (1) barriers and (2) cancer program characteristics. Results indicate that most cancer programs have adopted SCPs, but in most cancer programs less than a quarter of providers have ever used an SCP. This is consistent with previous estimates of SCP use, which range from 14 to 43 percent [9-11].

Also consistent with previous studies, we found that when SCPs are developed, they are often not delivered to survivors or PCPs [10, 18]. There are several possible explanations for this finding. First, respondents may not have known how frequently SCPs were delivered to survivors or PCPs. This explanation is unlikely, however, because no respondent selected the “Don’t know” response option (Table 1). And if respondents were reluctant to admit not knowing how frequently SCPs were delivered to survivors or PCPs, social desirability bias would likely have inflated estimates; our low estimates of SCP delivery suggest that this was not the case. Second, our findings reflect a single point in time, relatively soon after professional societies began to require SCP use. At the time of our survey, respondents’ cancer programs may not have implemented plans to deliver SCPs. A survey at a later date might have found more widespread SCP delivery.

Third, cancer programs may develop SCPs to meet minimum standards for compliance with professional societies’ SCP use requirements. Cancer programs using SCPs for the sole purpose of complying with professional societies’ requirements may be disinclined to make the organizational changes required to deliver SCPs to survivors and PCPs. Indeed, our results suggest that professional societies’ requirements compel cancer programs to use SCPs; insufficient organizational resources and systems are barriers to SCP use. These results are consistent with other studies of barriers to SCP use. Dulko and colleagues (2012) found that a substantial barrier to SCP use was the time necessary to obtain the information required to create an SCP [12]. Chubak and colleagues (2012) found that lack of staff impeded SCP use. Others have cited as barriers lack of templates, time to complete SCP, training and reimbursement for SCP use [10, 11, 19, 20].

Patterns in SCP use suggest that some cancer programs may be more susceptible to barriers to SCP use. Each of the cancer programs reporting no SCP use was a teaching hospital. Teaching hospitals may have fewer resources available to commit to using SCPs than other cancer program types [21]. None of these programs was a member of the American Hospital Association. As such, they did not participate in the American Hospital Association’s initiatives to improve hospital quality and organizational performance; these initiatives may have promoted SCP use [22].

Our study has several limitations. First, survey items were not validated. This measurement bias emphasizes the need for the development of measures in dissemination and implementation research [23]. Validated measures will promote strong research in a rapidly developing field. Second, social desirability bias may have caused respondents to over-report SCP use. Third, the majority of respondents were registered nurses and administrators. Their perspectives on SCP use may differ from the perspectives of other cancer program employees, such as medical directors, physicians, and other providers. Fourth, our sample size limited our ability to draw conclusions regarding relationships between SCP use and (1) barriers and (2) cancer program characteristics. Future studies should use larger samples. Fifth, our study results have limited generalizability. Respondents who agreed to participate in the study may have been more likely to respond if their cancer programs used SCPs. Further, responding cancer programs were not representative of other South Atlantic US cancer programs in terms of annual incident cancers, some program types, and membership in some professional societies; ostensibly, responding cancer programs were not representative of US cancer programs. Future studies should use a nationally representative sample of cancer programs.

Despite these limitations, our findings have implications for educating survivors and providers about survivors’ transition from cancer treatment to follow-up care. Professional societies’ efforts to educate providers regarding the use of SCPs may have a stronger influence when complemented by efforts to address barriers to SCP use. For example, professional societies may consider publicizing methods of SCP use that minimize the burden on organizational resources and maximize the use of organizational systems to facilitate SCP use. In particular, these efforts should target cancer programs that are susceptible to barriers to SCP use, such as those in under-resourced teaching hospitals.

Additional research is needed to better understand patterns of SCP use across professional societies, SCP templates (e.g., Journey Forward), and tumor groups. For example, if SCPs have been used most widely with breast cancer survivors, efforts to educate providers regarding SCP use may be most successful if they are focused on breast cancer care providers. Before this research is conducted, however, several methodological concerns must be addressed. First, the definition of “SCP” must be clarified. Currently, several, often conflicting, definitions exist. Second, reliable and valid measures of SCP use and its determinants must be developed. For example, is including SCPs in health records sufficient to educate survivors and providers regarding survivors’ transition from cancer treatment to follow-up care, or must SCPs be delivered to survivors during a clinical visit and sent to providers to qualify as effective SCP use? Third, optimal survey respondents should be identified. Do medical directors have intimate enough knowledge of SCP use, or are perhaps nurse managers more appropriate respondents? Addressing these methodological concerns will bring us closer to understanding patterns of SCP use; understanding patterns of SCP use will help to target efforts to educate providers regarding SCP use and, in turn, the potential for survivors to benefit from SCPs as intended.