There is a growing population of young adult cancer survivors who require long-term follow-up care to assess for both medical and psychosocial late effects of cancer treatment [4
]. This national survey of young adult cancer survivors of both pediatric and adult malignancies describes patterns of post-treatment health care utilization, frequency of receipt of survivorship care planning documents, role expectations of providers, and the relationship between sociodemographic, self-rated health status and post-treatment care patterns with self-reported confidence in cancer survivorship care planning. Through the LIVESTRONG™
Survivorship Center of Excellence Network, we obtained a diverse sample of young adult cancer survivors cared for within a wide variety of tertiary health care settings with different models for delivering survivorship care [33
There were several notable findings. This sample of young adult cancer survivors had high levels of education, income, and health insurance, along with access to care at an NCI-designated Comprehensive Cancer Center. Nonetheless, a significant proportion of survivors were lacking important documents that could facilitate post-treatment care, specifically, not having copies of cancer treatment medical records, a treatment summary, and a survivorship care plan. Only 26% of survey respondents reported possessing all three survivorship care planning documents which are considered indicative of good quality survivorship care [3
]. These findings, however, likely over-represent the proportion of young adult survivors having these survivorship care planning documents, since the majority of young adult survivors do not utilize cancer centers for follow-up and infrequently receive recommended late effects screening based on their previous cancer treatment [42
The high percentage of survivors not reporting receipt of a survivorship care plan (55%) is particularly concerning. The factors that may account for the lack of receipt of a survivorship care plan include outpatient infrastructure barriers and a focus on screening for cancer recurrence in the outpatient oncology setting rather than on health promotion and disease prevention for survivors [44
]. The outpatient infrastructure barriers may include having insufficient time within clinics to prepare for survivorship care discussions. There also may not be the incentive in the outpatient oncology setting to invest the time in developing a survivorship care plan due to lack of adequate insurance reimbursement. Additionally, survivors may not recall receiving a survivorship care plan as this study is using self-reported data, which highlights the complex nature of delivering cancer-related follow-up between the survivor and providers of survivorship care. Deficits in any one area, for example having a survivor who is neither well-informed nor participatory in their survivorship care planning, can ultimately impact on their long-term health outcomes [45
]. Research evaluating the most effective communication strategies for delivery of survivorship care plans is an important area of future investigation.
Even though post-treatment survivorship care is a recognized distinct phase of oncology care, providing survivorship care plans appears to be a work-in-progress in the oncology setting based on our findings. In addition to considering provider roles, efforts to increase cancer survivorship care planning should also examine patient-related barriers. These barriers may include cancer stigma, avoidance and lack of awareness of the need for late effects discussions and survivorship visits [6
]. Young adults may not want to have survivorship discussions with their oncologists or other providers of care as they seek to return to “a normal life” and integrate with their peers [24
]. Future research should explore the impact psychosocial issues may have on the discussions and receipt of survivorship care planning in young adult survivors.
This is the first study to our knowledge to identify the positive effect that survivorship care plans can have on young adults in preparing them to be confident consumers of survivorship care. The finding that the lack of a survivorship care plan is associated with higher odds of being in a low confidence group of survivors adds to the growing body of literature within medical oncology discussing how survivorship care plans can promote optimal care by functioning as an efficient communication method among providers [25
]. Survivorship care plans seem to prepare survivors to be more self-assured in being their own health advocates. There have been several national efforts to improve the dissemination of survivorship care plans in the medical oncology setting, including the development of survivorship care plan templates for use by providers or survivors [52
]. Future research should explore the use of different strategies for delivering survivorship care plans and whether they improve confidence and health promotion actions in young adult survivors.
There is an evolving area of research seeking to understand how survivorship care plans are used by survivors and health care providers to coordinate and improve survivorship care. While survivors in this study report that oncologists have the primary role for cancer-related care and symptom management, prior research has demonstrated that the majority of survivors are seen in the community medical setting during the young adult years [42
]. Given the multiple settings in which young adult survivors can receive care, survivorship care plans should delineate and clarify providers’ responsibilities in survivorship care management [10
]. It is difficult, however, to implement effective communication technologies when providers are practicing within different health care settings, including the primary care office, community-based oncology office, academic center, and/or cancer center [56
]. As a result of this fragmentation of care and poorly coordinated health care system, young adult survivors are often left responsible for coordinating their own care, from active cancer treatment to off-therapy, between their different providers of care. Our findings suggest that these survivors do not endorse the “shared-care model” with involvement of both the oncologist and primary care physicians in managing their health care needs. Instead they rely on their oncologist for symptom management and testing and treatment decisions [6
]. The lack of transition by young adult survivors in this study from the oncology to the primary care setting may originate from the lack of awareness that survivors have non-cancer related health needs [57
] and/or a strong therapeutic relationship with the oncology team.
Also noteworthy are the health care factors that did not predict low confidence in managing survivorship care, including whether the survivor is currently visiting an oncology or survivorship clinic or other models of care delivery including the “shared-care model” or PCP only. Age at diagnosis and current age were also not statistically significant predictors in either the bivariate or multivariate models. Given these findings, there is no single model of care that conveys advantages in promoting cancer survivor self-confidence, as long as survivorship care plans are prepared and shared with survivors.
Lastly, an important significant finding is that ethnic minorities were a high-risk group for low confidence in managing their survivorship care. This result reinforces previous research demonstrating significant disparities by race/ethnicity and language in cancer survivors’ views of quality of care [58
]. In colon cancer survivors, problems with coordination of care and access to care have been found to be significantly more common for African-Americans, Asian/Pacific Islanders and non-English speaking whites. Other exploratory studies have found limited understanding and misperceptions of cancer risks in minority populations. In African-American men, participants recommended community-based health education or word-of mouth education from their peers to improve their cancer risk knowledge [59
]. Qualitative research in minority breast cancer survivors has found that survivorship care plans have the potential to serve as a health-enhancing tool by decreasing anxiety following the completion of treatment, increasing the use of late effects screenings, and increasing confidence in discussing health concerns with their PCP [60
]. Given our findings, future research exploring interventions to improve the awareness of the need for survivorship care planning within diverse populations of young adults is an important area of investigation.
There are study limitations that should be considered in the interpretation of these results. A convenience sample was obtained from NCI-designated Comprehensive Cancer Centers across the U.S. and we cannot be certain of the generalizability of our findings. Sampling bias, as a result of the challenges of tracing lost-to follow-up young adult cancer survivors, is a recognized challenge in young adult survivorship research as this population is very mobile due to their life transitions [61
]. The sample also included a significant percentage of survivors with higher socioeconomic resources. This may lead to overestimation of the rates of reported survivorship confidence as these participants had access to cancer centers, which specialize in survivorship care. Taken together, these study limitations could restrict the generalizability of the findings, which may yield overestimates of survivor self-confidence in managing their survivorship care. Conversely, there is also the limitation of using self-reported data for the measurement of receiving late effects counseling. The oncology literature has shown disagreement between self-reported information and medical record information concerning knowledge of cancer diagnosis with a significant proportion not adequately recalling even their cancer diagnosis [63
]. However, given that the young adult survivor is the center of the patient-clinician relationship, it is important to have a clear understanding of what they report knowing about their cancer diagnosis and treatment. If discrepancies are identified, targeted educational interventions can be developed to improve the survivorship care that young adult survivors receive.
In conclusion, lacking survivorship care plans was associated with higher risk of reporting low self-confidence in managing cancer survivorship care. Non-white race/ethnicity is an independent risk factor for reporting low confidence in managing survivorship care. These findings suggest that interventions to increase provision of survivorship care plans for young adult cancer survivors should be tested to potentially improve confidence in managing survivorship care, particularly for ethnic minorities.