Report Highlights Struggle to Help Survivors Prepare for Life After Treatment

OncologyLive, Vol. 20/No. 14, Volume 20, Issue 14

A strong unmet need for survivorship care plans exists in the cancer treatment community and better follow-up is required for patients who have moved on from treatment and are experiencing its aftereffects.

Lee S. Schwartzberg, MD

Table. Study Demographics

A strong unmet need for survivorship care plans (SCPs) exists in the cancer treatment community and better follow-up is required for patients who have moved on from treatment and are experiencing its aftereffects. Those are among the conclusions of a report based on findings from separate surveys by the Association of Community Cancer Centers (ACCC) and the National Coalition for Cancer Survivorship (NCCS). Most institutions (83%) included in the ACCC survey require SCPs to meet their Commission on Cancer accreditation needs, but only 54% said they provide SCPs “very often” and 20%, for every patient. Moreover, fewer than half (45%) of patients included in the NCCS survey reported relying on aftercare information provided by their oncologist, and few patients regard the oncologist as the “go-to” resource for such information.

The SCP is defined as a treatment summary and follow-up care plan that may be developed at any point along the treatment path. The National Academy of Medicine has long supported the use of SCPs to manage long-term and late adverse effects of treatment and to facilitate coordination of treatment among the patient, oncology care team, and primary care team.

The number of cancer survivors is expected to grow to more than 20 million by 2026, up from 16 million adults and children with a history of cancer in 2016. The authors of the survey report concluded that there is a need not only for greater use of SCPs, but also training for oncology teams and greater integration and prescribing of nonpharmacologic supportive care services.

The findings “clearly illustrate the emotional and financial challenges that cancer survivors face, both during and long after their treatment. While survivors feel their physical needs are being addressed, they are not getting the help they need for some of the most frequent and severe side effects,” the authors wrote.

For its survey, the ACCC queried its membership of healthcare providers (HCPs); 93 participants responded, 69% of whom were nurses or nurse practitioners. The NCCS surveyed 1380 survivors treated at 9 member institutions (Table).

Twenty-seven percent of patient respondents received treatment with immuno-oncology (IO) agents. Lee S. Schwartzberg, MD, chief of the Division of Hematology/Oncology at the University of Tennessee Health Science Center and chair of the ACCC Immuno-Oncology Institute Executive Committee, told OncologyLive® that patients treated with IO agents represent a new class of survivorship because they don’t experience high levels of toxicity with therapy or their disease as many patients do. They also haven’t finished therapy and moved to observation.

“These patients fall somewhere in the middle,” he said. “They’re getting ongoing therapy, which has few acute toxicities but has the potential for serious, somewhat subtle, development of late toxicities.”

The report said that across the broad cohort of patients surveyed, 16% said they did not discuss aftercare with an HCP. Most (55%) rely on online sources, 39% depend on support groups, and 32% turn to patient advocacy organizations to find survivorship resources. Of patients who discussed aftercare with an HCP, 54% initiated the conversation.

Survivors had 5 primary concerns post treatment:

  • Getting/keeping health insurance (45%)
  • Having the financial support patients felt they needed (42%)
  • Managing ongoing adverse effects (42%)
  • Uncertainty about the future (41%)
  • Having enough energy to get through the day (39%)

Figure. Frequency that Key Topics Arise After Treatment

Survivors reported looking for information on topics such as managing long-term symptoms, alternative medicine, insurance coverage, and exercise. However, less than one-third of respondents described their HCP as “very helpful” in responding to their main concerns, particularly those relating to emotional, insurance, and financial issues. Only 42% of HCP respondents reported discussing referrals to other providers for management of posttreatment care or the availability of financial services and support. Although most programs provided nutrition programs or mental health support groups for survivors, only 43% provided information about returning to work, 38% discussed integrative medicine, and 27% offered programs for managing long-term symptoms.

Cancer survivors treated with IO agents were more satisfied with their aftercare than survivors treated with other modalities. Compared with other respondents, those survivors were more likely to say they felt prepared to transition to post treatment (85% vs 66%) and that their HCPs had been very helpful in responding to their financial (32% vs 15%) and emotional (32% vs 23%) concerns. They expressed many of the same financial and psychosocial concerns as other patients but were more likely to be concerned about having regular physician appointments (41% vs 28%) and starting a family or having children (25% vs 15%).

The authors of the report said that patients assigned to IO tend to be younger, wealthier, and better educated than other respondents. Schwartzberg said IO patients’ higher levels of contentment with posttreatment preparation appear to stem from the nature of IO treatment itself.

“The reason they do better is that the checkpoint inhibitors have very little acute toxicity outside of the autoimmune effects— the adverse effects of interest that occur as an on-target effect of stimulating the immune system,” he said. “Other than that, and some mild general constitutional effects like fatigue, as single agents, the IO agents tend to have little toxicity.”

Barriers to Aftercare Planning

Eighty-six percent of HCPs said their institutions adopted National Comprehensive Cancer Network guidelines to support survivorship care. Eighty percent of HCPs reported discussing possible long-term treatment effects with survivors, 76% reported discussing what to expect in posttreatment phase, and 71% reported discussing the availability of emotional or psychological support services. Just 56% discussed a posttreatment care plan or provided a nextstep summary to patients transitioning to posttreatment care.

Schwartzberg said that patients treated with IO agents require ongoing monitoring for toxicities. Nonetheless, the survey found that 16% of cancer programs do not follow patients post treatment to monitor for immune-related adverse events. Only 22% of programs have a formal follow-up procedure, while 34% depend on informal follow-up and 19% on patient self-reporting.

There is no doubt HCPs recognize the value of SCPs. Twenty-one percent of these respondents said targeted IO guidelines are key to survivorship care planning for patients who completed treatment, as well as for those who have responded to and continue to receive therapy.

Schwartzberg feels that the survey results underrepresent the physicians who have these conversations over time but generally don’t have an aftercare discussion with patients. “Having a formal session to talk about what was done and the long-term side effects remains elusive. It hasn’t flowed into the workflow of taking care of patients,” he said (Figure).

He added that drafting an SCP is time consuming, as such meetings can take up to an hour or more. “It’s difficult for an oncologist who’s seeing new patients who require active therapy to fit this into the schedule.”

He went on to say few, if any, oncologists or other providers receive formal training in survivorship, which explains the reluctance to engage in these conversations. Most programs are created ad-hoc at individual institutions.

Forty-eight percent of programs said that IO survivorship care planning is a significant challenge due to the lack of specialized recommendations and considerable variation in the number of patients who transition to posttreatment survivorship care. At 5% of institutions, most patients make that transition. In contrast, fewer than 10% of patients do so at 18% of institutions.

Schwartzberg recommends tackling the problem by creating survivorship/aftercare teams led by advanced care practitioners within the oncologist’s office to serve as a resource for patients.

“We’ve been struggling, and this report is another example, to quantify the difficulty of creating a formal mechanism for survivorship and for aftercare,” he said. “As a specialty, we have to pay attention to this. This report highlights the difficulties that are still seen probably a decade on from the recognition that survivorship planning and communication is important for patients.”

Association of Community Cancer Centers. Elevating survivorship: results from two national surveys. ACCC website. docs/Documents/oncology-issues/articles/mj19/mj19-elevating- survivorship. Published May-June 2019. Accessed June 7, 2019.