There are currently over 18 million cancer survivors in the US; breast cancer survivors account for almost a quarter of this population at 4.1 million¹. Over 20 years ago, the National Academy of Medicine released its report, From Cancer Patient to Cancer Survivor: Lost in Transition², calling for improving care and quality of life for cancer survivors. Yet, even today, receipt of high-quality survivorship care remains elusive; in part due to an aging patient population, many of whom have ongoing treatment-related issues (e.g., pain, fatigue) and unmet physical and psychosocial needs (e.g., recurrence worry, issues related to finances and employment) that persist during survivorship^3–5.

National organizations have called for more primary care provider (PCP) involvement to meet the challenges of survivorship care delivery, especially for survivors with low risk of cancer recurrence^{6, 7}. There is strong evidence that suggests that survivorship care primarily delivered by PCPs as compared to oncologists results in increased receipt of preventive care services, higher patient satisfaction, and reduced costs, all without compromising cancer-specific outcomes (recurrence, quality of life)^{8, 9}. Despite this, implementation of primary care-led models of survivorship care delivery has lagged. Challenges include uncertainty around PCP knowledge about survivorship care, lack of clarity around provider roles in survivorship care delivery, and poor communication and coordination of survivorship care between primary and oncology care teams^10–12. Prior research has primarily focused on the immediate phase after completing definitive treatment for cancer or has solely characterized utilization in the survivorship period.¹³ Very little is known at the population level about primary care involvement later into the survivorship period, particularly beyond the initial five years post-treatment when transitioning to primary care is recommended for many survivors.^{7, 14}

To address this gap, we surveyed early-stage breast cancer survivors who were >5 years out from having completed their initial cancer treatment. We aimed to describe primary care involvement in the delivery of survivorship care and the management of common survivorship-related issues and examine variation in primary care involvement by survivor characteristics. We hypothesized that primary care involvement in survivorship care may be greatest in vulnerable populations of survivors at risk of poor outcomes, where continuity between primary care providers and patients may help mitigate disparities in receipt of high-quality survivorship care^15–17.

A total of 1,412 out of 2,361 eligible women completed the follow-up survey (follow-up response rate 60%). Compared to responders, non-responders were older (31% 70+ years vs. 23.3%; p<0.01), Black or Latina (19.4% Black and 24.5% Latina vs. 17.9% and 17.6% respectively; p<0.01), with Medicaid or Medicare insurance (14.4% Medicaid and 17.7% Medicare vs. 9.0% and 12.7% respectively; p<0.01), had 2+ comorbidities (51.9% vs 43.0%; p<0.01) and a subsequent cancer diagnosis (6.8% vs. 3.8%; p<0.01) (Supplemental Table 4). Table 1 describes our cohort characteristics. On average, women were 59.5 years, were diagnosed with stage I (56.8%) or II (24.0%) breast cancer, were treated initially with breast conserving surgery (64.4%), radiation therapy (64.0%), and endocrine therapy (74.6%), and were over 6 years into their survivorship (mean 6.90, SD 0.35). At follow-up, 27.3% were currently on endocrine therapy. The majority had at least 2+ comorbidities (58.3%). The cohort included a diverse population of white (51.2%), Black (18.7%), Asian (9.7%) and Latina (18.5%) women with varying levels of education (26.3% high school graduate or less, 29.0% some college/technical school, 25.0% college graduate, and 19.7% graduate degree or more). The majority of patients reported seeing their current PCP for > 5 years (53.3%) and seeing their PCP at least 3 times over the past 2 years (38.0% 3–5 times/2 years, 18.1% 6+ times/2 years). The majority also reported being very/extremely confident (64.7%) in their PCP’s ability to manage survivorship care.

In this population-based study of early-stage breast cancer survivors >5 years out from initial treatment, we found that primary care involvement in survivorship care delivery remains low and PCP management of common survivorship issues was only moderate. The majority of women reported their oncologist was still largely responsible for survivorship care delivery. This is despite nearly two-thirds of patients reporting high confidence in the ability of their PCP to manage survivorship care. While national organizations recommend transitioning survivorship care to primary care for many of these patients after the 5-year mark, our results show primary care involvement remains low, and little variation was seen across survivor sociodemographic or clinical characteristics.

Prior studies to date assessing survivorship care delivery have mainly focused on the immediate period after treatment. Extensive data has shown which providers patients see for their survivorship care in the early phase after completing cancer treatment^{20, 22, 27}. Recent findings from Birken et al found that most survivors being followed at a single cancer center were lost to PCP follow-up 5–7 years post-diagnosis.¹³ Our findings build upon these by characterizing provider involvement in survivorship care delivery more than 5 years out from treatment and across diverse care delivery settings, including community practices. Taken together, the results from Birken et al and our study suggest that transitioning survivorship care to PCPs for lower risk survivors at the 5-year mark is not routinely happening. Thus, transitioning patients to primary care for survivorship requires concerted efforts at a policy/system level. While there have been consensus statements encouraging risk-stratified survivorship care pathways (i.e., patients at low risk of cancer recurrence can be followed by primary care), there are no clear guidelines that recommend transitioning survivors to primary care for continued survivorship care. ^{7, 14} This likely contributes to the lack of systematic implementation of care pathways, i.e., transitioning the appropriate patients to primary care for survivorship. This is also despite prior literature showing PCPs’ willingness to participate in survivorship care.^{22, 28–31} Failing to transition appropriate patients to primary care has real-world practice implications as it exacerbates well known current capacity constraints within oncology. Indeed, Sussman et al. showed that ~25% of breast cancer survivors who were > 5 years post diagnosis continue to see a cancer specialist.³² An important next step to improving the efficiency in survivorship care delivery in the US is determining how to best operationalize and implement risk-stratified care models clinically.

Women in this cohort reported varying levels of PCP management of common survivorship issues. Not surprisingly, more frequent PCP management was reported for issues routinely managed in primary care (e.g., medications, chronic diseases). But very few patients reported often or always discussing more typical cancer-related issues such as symptoms related to recurrence or managing physical side effects of treatment or emotional issues; this was true even for those who reported PCP-led survivorship care delivery (data not shown). As national organizations recommend transitioning low-risk survivors to primary care during survivorship, we need to ensure that all essential components of high-quality survivorship care—which includes managing long-term and late effects from treatment and psychosocial needs—are effectively addressed. To achieve this, it will be important to ensure PCPs are knowledgeable about survivorship and confident in managing survivorship-related issues, both commonly reported barriers to primary care involvement^{33, 34}. Indeed, survivorship care guidelines have been shown to improve PCP confidence in providing care³⁵. Developing guidelines that are primary care focused and targeted to a primary care audience is an important next step.

Women who reported confidence in PCP ability to manage survivorship care were more likely to report both PCP-led survivorship care delivery and PCP management of survivorship issues. While two thirds of women reported being very/extremely confident in their PCP’s ability to manage survivorship care, primary care involvement still was low. This suggests a need to translate patient confidence about the ability of PCPs to provide survivorship care to clinically operationalizing PCP-led survivorship care delivery. Despite rich data showing primary care involvement in survivorship leads to improved patient-reported outcomes and decreased costs without compromising detection of cancer recurrence, some cancer specialists and patients remain hesitant about transitioning survivorship to primary care. For example, the majority of oncologists²² do not perceive that PCPs have the skills to provide survivorship follow-up. Patients also have reported lack of confidence in PCP knowledge around their cancer-related issues²³. Especially for women who remain on endocrine therapy for their breast cancer beyond the initial 5 years, they may view this as continued cancer treatment and thus, prefer to still see oncology. Cancer specialists should discuss with their patients their changing role as well as the increasing role of primary care during survivorship. This will be helped by encouraging patients to continue seeing their PCP throughout their cancer care as well as communicating with PCPs to keep them informed about their patient’s care, including issues that the PCP should follow. This will help facilitate setting expectations for both patients and PCPs transitioning to primary care when appropriate. Indeed, our prior work in this cohort showed that women who reported high PCP engagement in their cancer care during treatment were less likely to prefer oncology-led survivorship care after initial treatment¹⁹.

There are potential limitations to acknowledge. Our results summarize patient report of provider involvement in survivorship care delivery. It may be that patient perception differs from actual care delivery, but our study builds upon those focused on utilization by elucidating patient perceptions about provider involvement in survivorship care.^{13, 32} Additionally, the measure of provider involvement was not specifically anchored on the timing of the expected transition to primary care at year 5, and thus, respondents may have considered a longer time frame in survivorship (from initial treatment until time of survey) and not just after the expected transition at year 5. While this cohort is comprised of a diverse sample of women who are cared for across different practice settings, the cohort was sampled from two geographic areas of the US. Thus, generalizability to other settings may be limited.

In conclusion, most women with a history of early-stage breast cancer reported their oncologist was primarily responsible for their survivorship care >5 years after completing initial treatment and PCP involvement in the management of common survivorship issues was only moderate. Our results underscore the importance of patient confidence in PCP ability to manage survivorship care as this was positively associated with greater PCP-led delivery and management of survivorship issues. With a growing population of cancer survivors who need ongoing care, efforts should focus on transitioning appropriate patients (e.g., early-stage disease, low risk for recurrence) to primary care for follow-up.