Social determinants of health linked to lower likelihood of survivorship care plan receipt

With cancer becoming less of a “death sentence” and more of a chronic illness, patients with cancer are increasingly making the transition from active treatment to long-term survivorship.

Survivorship care plans are a tool to help patients return to their normal lives after undergoing successful treatment. However, a study published in Supportive Care in Cancer showed that these plans are not being provided to vulnerable populations that may have a particular need for them.

“A set of needs related to cancer survivorship has emerged over the past decade or more involving patients returning to their new normal, participating in ongoing surveillance to detect cancer recurrence early, and monitoring for side effects related to the initial treatment that may emerge over time,” researcher David Haggstrom, MD, MAS, director of Regenstrief Center for Health Sciences Research, associate professor of medicine at Indiana University School of Medicine, and a member of Indiana University Melvin and Bren Simon Comprehensive Cancer Center, told Healio. “Over the past decade, we have been in a dissemination phase of encouraging providers to develop these care plans to help their patients transition.”

Haggstrom and colleagues from Indiana University School of Medicine, Regenstrief Institute and The Ohio State University evaluated data extracted from the 2016 Behavioral Risk Factor Surveillance System’s Survivorship modules. The researchers sought to determine the role social determinants of health played in the distribution of survivorship care plans.

Haggstrom spoke with Healio about discrepancies in the provision of survivorship care plans, the potential reasons for these gaps, and how survivorship care plans might be distributed more equitably.

Healio: Why did you conduct this study?

Haggstrom: Increasingly, we’ve been aware that cancer survivors may have special needs that deserve attention. These include needs related to the cancer itself, as well as noncancer needs, such as healthy lifestyle, general medical issues and managing chronic comorbidities such as high blood pressure or diabetes. To meet these needs, the Institute of Medicine initially championed survivorship plans, releasing an impactful report recommending them. Many other professional organizations have also supported these plans, including ASCO and American College of Surgeons, which does accreditations for cancer centers. Our study asked the question, “Who are these survivorship plans reaching?”

Healio: How did you conduct the study?

Haggstrom: We used nationally represented data from the Behavioral Risk Factor Surveillance System survey, which included some special modules related to survivorship. We explored what patient populations had been more likely to receive these survivorship care plans. We found some vulnerable populations, such as those with low educational achievement and uninsured individuals, were less likely to receive these plans. Younger patients were more likely to receive care plans than those over age 65 years. Patients with a separated/divorced marital status had a lower rate of survivorship care plan receipt.

Healio: Do you know why these vulnerable populations did not receive survivorship care plans?

Haggstrom: One of the limitations of a survey study is that we are not able to follow up or speak directly to participants about the reasons for this. However, given what we know about health care delivery, one reasonable explanation may be that more vulnerable populations — those with lower levels of education and certainly the uninsured — have less access to health care in general. So, since survivorship care plans are the communication and transition-of-care document within the delivery of health care, those with reduced access are less likely to receive these planning tools.

Healio: What do you think needs to be done to improve the distribution of survivorship care plans?

Haggstrom: One recommendation we have is providing adequate reimbursement for survivorship care plans and their preparation in the health care system. Obviously, providers are busy with the many needs and health care demands of their patients. So, providing incentives to support the development of these tools would certainly be helpful in dissemination. I think there is potential for accreditation organizations to place greater emphasis on the delivery of survivorship care plans. Although these organizations advise the use of these plans, I think more could be done to encourage adherence to or delivery of these tools.

I also think not much has been done to make survivorship care plans culturally or linguistically appropriate, as well as tailor them to special populations. So, presenting this medical or clinical information in ways that patients are more ready and able to understand would be helpful.

Empowering patients can also be helpful in the provider/patient relationship. Having active, engaged patients is a very important component of health care delivery. We can empower patients to expect or advocate for the receipt of information about their treatment, and survivorship care plans can help.

The last recommendation I would make — and this has probably only become more important than when we reported our findings — is the use of telehealth in delivering survivorship care plans. We do so much more in the way of virtual care. So, we would recommend incorporating these virtual care challenges into survivorship care plans.

Healio: What are the potential repercussions of survivors not receiving survivorship care plans?

Haggstrom: The delivery of these care plans is consistent with general principles of care delivery. Some elements of the survivorship care plan include a summary of the treatment the survivor has received and recommendations for future tests or surveillance. So, on some level, these are already accepted components of standard medical practice.

In terms of outcomes, the study evidence is mixed. Some trends in the literature suggest survivorship care plans increase communication between primary care providers and subspecialists. This is one of the goals of survivorship care planning. We want to recognize that these patients are seeing multiple providers and, as they progress in survivorship, they are increasingly seeing their primary care providers. So, these tools can serve as a facilitator to increasing communications among the patient care team.

There is also some evidence that survivorship care plans increase adherence to certain guidelines. For example, prostate cancer survivors should periodically receive a PSA test to detect recurrence. A trial suggested that prostate cancer surveillance improves with delivery of these care plans. Exploring these questions has become an area of active research. We are starting a trial this year to look at the impact of survivorship care plans delivered online to improve surveillance and symptoms in colorectal cancer survivorship. I think there is certainly more to learn.

Healio: What is next in terms of evaluating survivorship care plans?

Haggstrom: Survivorship care plans are one component of a comprehensive approach to delivering survivorship care over time. In addition to the care plans, the field of survivorship care has increasingly focused on what models of care delivery can best be designed in the health care system to support the needs of cancer survivors.

One model of care delivery may involve greater involvement with primary care clinicians in delivering and addressing survivorship care among patients. There may be other models, as well, including special clinics at both academic and community cancer centers, which will increasingly involve nurse practitioners or other providers who are especially trained in survivorship. Survivorship care plans are an important component in our overall effort to develop effective models of care delivery for cancer survivorship.

For more information:

David Haggstrom, MD, MAS, can be reached at 1481 W. 10th St. 11H, Indianapolis, IN 46202; email: [email protected].