Predictors and impact of survivorship care plans and survivorship care visits

For people treated for cancer, the provision of care at the end of curative cancer therapy has been a focus for quality improvement since the 2006 publication of the seminal report, From Cancer Patient to Cancer Survivor: Lost in Transition, from the National Academies of Science, Engineering and Medicine [4]. It served as a wake-up call to the oncology and primary care communities and was the impetus for the survivorship care plan: a document that provided cancer survivors with a treatment summary, delineation of cancer-related follow-up, and information on late and long-term effects of cancer treatment. In 2015, the Commission on Cancer made provision of an SCP a quality benchmark, despite the lack of evidence of its impact on the quality of care post-treatment [5, 6]. A 2020 systematic review and meta-analysis reported no significant differences between SCP recipients and controls on cancer-related knowledge, physical function, satisfaction, or self-efficacy at 6 months, with no differences in anxiety, cancer-specific distress, and depression of satisfaction with how they were being followed at 12 months [7]. Interestingly, most of the data evaluates the implementation of SCPs and outcomes but less so on the impact of the SCV among those who receive an SCP.

At LCI, we aimed to provide all people completing cancer treatment with an SCP and provided them with the option to review it at a formal SCV or to have it mailed to them directly. Our overall rate of SCP completion is 37.7%, which reflects the barriers to implementation we have experienced, particularly time and reimbursement. A national survey of cancer care providers noted that clinicians were only willing to dedicate about 20 min of their time toward developing a SCP, which can take up to 1.5 h for development [8]. Although Medicare funding is available for documenting SCP development, no funding is available for reimbursing providers for this service [8].

Among those receiving an SCP, we found significant differences among those who were seen in an SCV around gender, age, and cancer type. In the provision of SCPs and SCVs, women, age under 60 years, and diagnosis of breast cancer were significantly associated with both. While these factors reflect the general demographics of the population studied, it may also reflect differences in disease-specific specialists as it relates to their uptake and hence referral for survivorship care services. In one study that applied machine learning using the Oncolink database, breast cancer survivors were reported as much more likely to receive an SCP with melanoma survivors far less likely to report getting an SCP [9].

Of perhaps greater interest is our finding that having an SCV was associated with higher rates of subsequent referrals among those receiving an SCP. Compared to patients who only received an SCP, those who received a SCV had a significantly increased referral rate to psychological support, PT/lymphedema, nutrition, and sexual health services. This correlates with a prior survivorship study involving patients with ovarian cancer who favored an in-person visit over a mailed document alone after completion of treatment to discuss the need for further referrals [10]. This finding suggests that the SCP may provide value by pointing survivors towards specialty services and that an SCV can increase the identification of issues which would necessitate more referrals.

In our health system, predictive factors of receipt of both SCP and SCV include age, gender, and cancer type. This correlates with a prior study involving breast cancer survivors which reported that the top five variables associated with obtaining an SCP were cancer type, the setting in which care was rendered (e.g., university versus community-based), the type of clinician managing their cancer care, the receipt of a treatment summary, and geographic location [9]. The reason for cancer type being predictive of SCP and SCV referrals is likely in part provider dependent. During our data collection, we noted our oncologists managing patients with breast and colorectal cancers, for example, were found to initiate more survivorship care planning than those managing lung and prostate cancers. One reason could be that oncologists in the former category likely had more frequent follow-up visits scheduled with their patients and thus more opportunity to initiate survivorship care discussion.

Patients with particular cancers may desire different mechanism and timing of delivery of survivorship information. One study that looked at unmet needs and barriers to use SCP breast cancer survivors reported that patients found it difficult to keep up with several follow-up preventative care appointments occurring at varying intervals as well as lack of understanding and need to self-manage treatment-related symptoms without discussing with a provider [11]. On the other hand, one study reported that GI cancer survivors tend to seek out nutritional and activity recommendations from their oncologists sooner than other cancer survivors as they present with more nutritional complications and more gastrointestinal symptoms following completion of their treatment modalities [12].

There are ongoing studies assessing how risk-stratified survivorship care can be delivered to cancer patients. Patients with low risk of recurrence or low likelihood of treatment side effects may benefit from self-management, whereas those with medium risk of recurrence could benefit from a SCP alone with regular follow-up primarily with their primary care team [13]. For those patients with a high risk of recurrence, significant medical or psychosocial co-morbidities, or late or significant treatment adverse effects, a SCV including follow-up with specialized clinical nurses, scheduled screening for recurrence, and referrals to rehabilitation, psychological, or nutritional support services as needed would be more beneficial than a SCP alone [13]. However, barriers such as limited upfront risk-stratifying methods and limited coordination among care providers have prevented risk-stratified survivorship care from being widely adopted to standard practice [14].

Patient preferences likely also play a role in whether or not a SCV occurs. Some patients in our institution were given preferences for their SCP to be delivered over the phone or mailed, but reasons for those preferences had not been recorded. Some reasons could likely be time or financial constraints (including copays for visits) or restrictions with travel.

Despite the Commission on Cancer removing the SCP mandates, our data show that patients who received either SCP, SCV, or both were more likely to receive specialty referrals than those who received neither and that patients with higher mean distress scores at presentation had a higher referral to psychiatric/psychological services following completion of cancer care. Thus, there continues to be a demonstrable benefit to both SCP and SCV despite institutional barriers such as lack of time and resources. One strategy for successful implementation of SCPs can be assigning the duty to other employees such as NPs or nurse navigators, which has been occurring at our institution [8, 15]. Other strategies can be updating EMR documentation to include accurate cancer diagnostic and treatment history and follow-up as well as possibly automating SCPs to the EMR [13, 16].

One future area of research would be to determine why oncologists may or may not choose to offer SCPs and why patients prefer to receive a SCP alone versus a SCV. Especially considering the current COVID-19 pandemic, it would also be interesting to examine if a plan delivered via video conferencing has similar efficacy to one delivered via an in-person visit. Barriers such as limited access to technology, lack of policies for reimbursement of telehealth, and safety/privacy concerns have limited adoption of telehealth for survivorship care across institutions in addition to patient perceptions that only an in-person visit would be effective to discuss symptoms and questions with care [17]. In the context of social distancing, cancer survivors may not be adherent to cancer surveillance and may not fully report any symptoms or concerns with their care due to the fear that an in-person visit would expose them to infection [18].

Finally, we note that there is a reconsideration afoot on how we should deliver and how patients should access these care plans. Given the increasing survival rates across multiple cancers with advances in immunotherapies and precision therapies, it is paramount that services extend to all these long-term survivors, defined from the point of their initial diagnosis through the balance of their treatment. Patients who live long term with distant disease or other immune and precision therapies should be included in survivorship services. As such, we have re-envisioned our survivorship program to encompass all patients following from the time of their diagnosis in our cancer center. Our Oncology Wellness, Lifestyles, and Survivorship (OWLS) program ensures that all our patients have access to quality care following a cancer diagnosis.

One strength of our institutional study included our large sample size of patients with several different malignancies. Another is the fact that it is one of the first to distinguish patterns of specialty referrals between SCPs and SCVs. Limitations of this study include that this data is from a single institution. We do not have more information on why patients did not opt for a SCP or SCV and whether patients completed their referrals to specialists; we only know whether referrals were made or not. We did not specifically assess satisfaction among patients who did or did not receive a SCP or SCV. We also do not know why there is a difference in referral patterns among oncologists in different subspecialties.

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