The number of survivors of cancer in the United States is increasing and expected to exceed 20 million by 2026.¹ In addition to the fear of recurrence, many survivors of cancer experience residual symptoms and other long-term effects of the cancer and its treatment, such as fatigue and distress.^1,2 Survivors of cancer also face a higher risk than the general public of new, biologically distinct cancers.^3,4 Given the complex physical, psychosocial, social, and spiritual needs of this population, the increasing number of survivors of cancer underscores the growing need to address the information and care gaps faced by survivors, such as those highlighted in the Institute of Medicine’s 2006 report, From Cancer Patient to Cancer Survivor: Lost in Transition.⁵ The seminal report recommended survivorship care planning to facilitate care coordination among survivors, cancer specialists, and primary care providers (PCPs) in addressing late or long-term adverse effects, emotional and social needs, and healthy lifestyles. The report also suggested patients receive a written and communicated survivorship care plan (SCP) that summarizes their diagnosis and treatment, describes possible late effects, and delineates a follow-up care plan that incorporates available evidence-based standards of care.⁶ The SCP was envisioned as a tool to deliver patient-centered care by facilitating patient–provider communication.

Patient–provider communication is central to the delivery of high-quality, patient-centered care, which has been associated with improved adherence, satisfaction, and self-management,⁷ and aligns with the core principals of medical ethics.⁸ In a nationally representative survey of survivors of cancer conducted in 2011, nearly one half of patients reported that they had never had a detailed discussion with any provider about late or long-term adverse effects, emotional and social needs, or lifestyle recommendations, and more than one quarter of patients reported not having a detailed discussion about follow-up care.⁹ Since that time, several guidelines have been issued and policies instituted aimed at improving the quality of survivorship care planning. Of note, the National Comprehensive Cancer Network, American Cancer Society, and ASCO have issued guidelines for survivorship care.^10–22 Resources for developing SCPs also have been developed by individual medical centers and organizations, such as LIVESTRONG and the National Coalition for Cancer Survivorship,^17,23 and the implementation of SCPs has attracted much research.^24–26 In 2012, the American College of Surgeons’ Commission on Cancer (CoC) —a leading accreditation body that establishes standards to ensure quality, multidisciplinary, and comprehensive cancer care delivery in health care settings—developed multiple standards aimed at improving survivorship care and mandated the use of SCPs in organizations seeking accreditation (standard 3.3).²⁷ To maintain accreditation, CoC required cancer programs to offer SCPs to 25% of eligible patients by the end of 2016, with a goal by the end of 2018 of 50% (lowered from the original goal of 75%).^27–29

In this descriptive study, we use data from both the 2011 and 2016 Medical Expenditures Panel Survey (MEPS) Experiences with Cancer survey to assess whether the quality of patient–provider communications regarding key elements of survivorship care has improved over time.

Descriptive statistics are listed in Table 1. The majority of respondents were female, non-Hispanic white, and married. There were only minor differences in the distributions of respondent characteristics between 2011 and 2016.

Distributions of responses to questions about key elements of survivorship care were similar in 2011 and 2016 (Fig 1). Proportions of respondents who did not receive detailed discussions—that is, received brief or no discussion—about key elements of survivorship care were statistically similar across the years of the survey. Specifically, the proportions of respondents who did not report detailed discussions about follow-up care were 35.1% in 2011 (95% CI, 31.9% to 38.4%) and 35.4% in 2016 (95% CI, 31.9% to 37.8%). In 2011, the proportion of patients who did not have detailed discussions about late or long-term adverse effects of treatment was 54.2% (95% CI, 50.7% to 57.6%) and healthy lifestyle or behavior change recommendations 58.9% (95% CI, 55.3% to 62.5%). Similar proportions were observed for 2016 at 55.5% (95% CI, 51.7% to 59.3%) and 57.8% (95% CI, 54.2% to 61.2%), respectively. The proportions of those who reported not having detailed conversations about emotional or social needs related to cancer or its treatment were 69.2% (95% CI, 65.9% to 72.3%) in 2011 and 68.2% (95% CI, 64.3% to 71.8%) in 2016. Of patients, 24.4% (95% CI, 21.6% to 27.4%) and 21.9% (95% CI, 18.9% to 25.2%) had detailed discussions about all four content areas in 2011 and 2016, respectively. In each year, follow-up care was discussed in detail most frequently, whereas detailed conversations about emotional and social needs were least frequent. Proportions of respondents who did not report any discussion about the four content areas also were statistically similar in 2011 and 2016 (Table 2).

These distributions of responses changed marginally when samples were restricted to survivors of cancer who were treated within the past 3 years (416 and 366 respondents in 2011 and 2016, respectively), but remained similar across survey years (Fig 2 and Table 2).

In the 2016 survey, 47.6% (95% CI, 43.8% to 51.4%) of the sample did not have detailed discussions about a summary of their cancer treatments.

We found that the frequency of patient–provider discussions about key elements of survivorship care did not change considerably between 2011 and 2016, with only one quarter of survivors reporting detailed discussions on all four topics—follow-up care, late and long-term effects, emotional/social needs, and healthy lifestyle. In addition, in 2016, approximately one half of respondents did not have detailed discussions with their providers about a treatment summary, corroborating concerns about survivorship care delivery and the dissemination of treatment summaries that were raised in a previous analysis of the Health Information National Trends Survey fielded between October 2012 and January 2013.³¹

These findings fall short of our expectations, given the national efforts and organizations promoting survivorship care planning, which highlights the need for improved quality of survivorship care delivery, including the 2012 CoC mandate on SCPs as a standard for accreditation and several guidelines on survivorship care issued by National Comprehensive Cancer Network, American Cancer Society, and ASCO between 2011 and 2015.^{11–16,18,19,27} More research is required to validate our findings and identify best practices for patient–provider communication, both at the population level and at point of care.

The multimodal nature of cancer therapy requires that many patients with cancer see multiple providers. Thus, concomitant medical needs that involve other, noncancer generalists and specialists may make coordination of care across the cancer control continuum particularly challenging. Inadequate flow of information among providers, in turn, may impede the quality of patient–provider communication and may help to explain the suboptimal communication identified in the current study. Gaps in communication may become pronounced when a survivor’s care management and oversight passes to the PCP.³² It has been reported that many PCPs do not consider survivors of cancer as a distinct patient population, have difficulties identifying them through electronic health record (EHR), or receive limited information regarding their guideline-consistent follow-up.³³

Our findings provide preliminary insights into the effects of policy changes, including the CoC mandate on SCPs, as they pertain to patient–provider communication about key areas of survivorship care. The SCP is intended to facilitate communication and coordination between the oncology team, other specialists, PCPs, and the patient; however, implementing SCPs in practice has had challenges. Crucial issues regarding the implementation of SCPs include a lack of standardized models of survivorship care, uncertainty about the timing and mode of plan delivery, and lack of clarity regarding how to integrate treatment plans and summaries into the care workflow and EHRs.^34,35 Other challenges include clinician time required to create SCPs, lack of reimbursement for this time, and the lack of evidence that SCPs improve outcomes.^19,34,36,37 Concerns also have been raised about an overemphasis on the means—the documentation and distribution of SCPs—but an insufficient focus on the ends: streamlining care and improving communication about sequelae of cancer, its treatment, and other vital aspects of follow-up.³⁷

Providers and policymakers could address these challenges systematically to support care coordination and the delivery of comprehensive survivorship care. Of note, there is limited guidance on the optimal ways with which to identify and address survivors’ late or long-term adverse effects, emotional and social needs, and issues engaging in healthy lifestyle behaviors throughout treatment and follow-up care across diverse cancer types, treatments, provider types, and demographic and sociocultural settings. Given these diversities, a one-size-fits-all approach may not be feasible. Instead, communication strategies should be tailored to the specific context in which survivorship care is delivered. To achieve this, greater emphasis should be placed on communication skills training for providers oriented toward cancer survivorship care planning as well as the development and dissemination of decision aids for clinicians to facilitate patient-centered communication. With a growing number of survivors of cancer being moved to primary care, there is a need to extend these training opportunities to PCPs.³⁸ In general, PCPs should be better integrated with the survivorship care paradigm to facilitate care coordination and the flow of information during and after the transition of care via electronic consultations or agreements between PCPs and oncologists.

The SCP is a potentially important tool for promoting communication about survivorship issues. Yet focusing exclusively on the documentation and dissemination of SCPs may not be productive.³⁷ More attention is needed on how to implement the vision behind the SCP. Optimal uses of health information technology may need to be explored in this regard. EHRs could play a key role in survivorship care by being continuously updated to reflect survivors’ evolving communication needs.³⁹ Health information technology could be used in multiple other ways to streamline the collection and dissemination of information while minimizing the burden on providers’ time. The functionality of EHRs could be enhanced to issue communication prompts during visits and capture the contents of communication within visit notes which could be shared with survivors. Dropdown lists and other attributes within survivors’ EHR portals could serve as important resources of information about sequelae of cancer, its treatment, and other vital aspects of follow-up. Looking ahead, research could strengthen the evidence base for best practices in communication with survivors of cancer targeted toward better implementation of these services and informing their appropriate reimbursement.

This study has some limitations. First, the data were self-reported, and with most respondents being long-term survivors of cancer, there is a potential for recall bias. However, our findings were consistent when restricted to more recently treated survivors of cancer, and questions pertained to any provider at any time since diagnosis. This comprehensive view of patient–provider communication is pertinent, given that survivors face increased risk of chronic health conditions and additional cancers across their care continuum.^40–42 Second, our ability to assess the effects of more recent efforts to improve survivorship care was limited. These efforts include the policy mandating increased dissemination of SCPs for CoC accreditation of cancer programs by the end of 2018, and the Centers for Medicare & Medicaid Services’ implementation of the Oncology Care Model, which provides incentives for furnishing services that are aimed at improving the care experience for patients undergoing systemic treatment of cancer (the 5-year performance period for the model began in July 2016).^29,43–45 Indeed, some responses even among recently treated survivors from the 2016 survey may pertain to discussions that took place before the implementation of policies and guidelines issued between 2011 and 2015.

These limitations notwithstanding, to our knowledge, this is the first descriptive analysis of trends in patient perception of the quality of communication about key aspects of survivorship care in a nationally representative sample of survivors of cancer. Our results suggest that continued efforts are needed to improve communication between survivors of cancer and providers, including the implementation and evaluation of targeted interventions in key survivorship care areas. Future research should assess patient- and provider-level barriers to communication about cancer survivorship through both prospective and retrospective evaluations and examine potential differences in communication by race/ethnicity, cancer type, and stage.