Emotional AEs Remain a Blindspot in Oncology Care

OncologyLive, Vol. 21/No. 19, Volume 21, Issue 19

Patients with cancer continue to find their health care providers “more helpful” in managing physical adverse effects resulting from cancer therapy compared with emotional or mental health AEs.

Patients with cancer continue to find their health care providers “more helpful” in managing physical adverse effects (AEs) resulting from cancer therapy compared with emotional or mental health AEs, according to new data in the 2020 State of Cancer Survivorship Survey from the National Coalition for Cancer Survivorship (NCCS).1

Findings from the latest evaluation build on the 2018-2019 State of Cancer Survivorship Survey, which fielded responses from 1380 patients with cancer who completed treatment or were receiving therapy for an initial diagnosis or disease recurrence, had metastatic cancer, or were being treated with immunotherapy. Responses from the earlier survey indicated that providers were more helpful in addressing nausea and vomiting, for instance, but “less helpful” in managing mental health–related AEs such as fatigue, anxiety, and depression.2 Although patient ratings of provider helpfulness with mental health AEs increased from 2018-2019 to 2020, this nevertheless remained the prevailing sentiment in the 2020 analysis.1

In contrast with the 2018-2019 survey, which presented data on whether patients felt their providers were “very helpful” or “somewhat helpful,” the 2020 survey specifically focused on the AEs for which patients said their provider was “very helpful.” Less than half of the 840 patients with cancer and survivors who participated nationwide between April 15 and May 1, 2020, said their provider was helpful in addressing specific AEs, many of which were emotional in nature (Table1,2). Although 49% of participants reported feeling overly tired, just 35% said their provider was “very helpful” in managing fatigue. Feeling overly tired was the most frequently experienced mental health AE among patients (49%), followed by depression and/or anxiety, which affected 30%. Thirty-four percent of respondents classified their provider as very helpful in managing this AE.1 “Fatigue, anxiety, and depression are some of patients’ key concerns and are also the concerns that patients feel like they’re getting the least help with. This was definitely consistent between the 2 surveys. To me, the biggest takeaway [from the report] is that we’ve done a pretty good job of dealing with most of the physical issues, but more work is to be done when it comes to managing the emotional issues,” Shelley Fuld Nasso, MPP, who is CEO of NCCS, said in an interview with OncologyLive®.

The third most prevalent mental health AE in the 2020 analysis was uncertainty about the cancer status, which affected 24% of patients. The top 3 physical AEs were loss of appetite/taste (28%), muscle/joint pain (27%), and nausea/vomiting or diarrhea (27%).

The 2020 survey included patients and survivors who had received a diagnosis of cancer within the past 2 years. Participants presented with a variety of malignancies at different stages. NCCS set subgroup quotas to ensure that the national sample was representative of the cancer population in the United States regarding age, gender, race/ethnicity, and region.1

In the 2018-2019 assessment, feeling overly tired, anxiety, and depression were also the 3 most common mental health AEs, affecting 67%, 58%, and 44% of participants during and after treatment, respectively. Forty-one percent of patients who experienced fatigue still felt overly tired at the time of the survey, treatment-related anxiety endured in 40%, and 28% percent of patients had ongoing depression. Regarding patient satisfaction with the care received, 24% of patients reported that their provider was very helpful in addressing feeling overly tired, whereas 39% indicated that the provider was “somewhat helpful.” Of note, feeling overly tired was one of the most severe AEs experienced across all participating patient subgroups, such as patients with metastatic disease and those receiving immunotherapy.2

The percentages of 2018-2019 respondents who perceived their provider as very helpful and somewhat helpful in mitigating anxiety were similar to this year’s, at 25% and 40%, respectively. Twenty-four percent of patients called the care they received for their depression very helpful, whereas 41% said it was somewhat helpful.

Although fatigue and mental health issues are the most prevalent AEs reported by patients and survivors alike, the 2020 survey data affirm what was apparent in the 2018-2019 responses: Patients feel they are not receiving adequate care for these pervasive emotional AEs. This sentiment is illustrated in the fact that less than one-third of patients discuss fatigue and anxiety/depression with their provider. Specifically, just 28% and 29%, respectively, of 638 patients from the national sample indicated that these elements of functional status were addressed in a conversation with their provider.1

The 2020 responses at large “show that we continue to focus on the physical aspects of cancer and cancer treatment and not as much on all the other ways that cancer [affect] someone’s life, and that’s where people really need support,” Shelley said.

Responses Reveal Greater Satisfaction Over Physical AEs

In both the 2020 and 2018-2019 State of Cancer Survivorship Surveys, patient perception of provider helpfulness was markedly higher in reviews of physical versus emotional AE management. For example, 54% of 2020 survey respondents reported that their provider was very helpful in addressing nausea/vomiting or diarrhea, which affected 27% of patients and was the fifth most common AE of any kind. In addition, 54% of participants stated that their health care team was very helpful in instances of skin irritation and other dermatologic problems, the 10th most frequent AE observed in this group of patients.1

Patient satisfaction with their care for physical concerns was similarly high in the 2018-2019 survey, with 51% of participants identifying their health care team as very helpful in instances of nausea/vomiting or diarrhea. Forty-one percent of patients classified their provider as very helpful with dermatologic problems.2 Notably, 61% of patients receiving immunotherapy (n = 262) said providers were very helpful in addressing dermatologic problems. The top 3 physical AEs to affect patients during/after therapy in the 2018-2019 survey were nausea/vomiting or diarrhea (49%), muscle/joint pain (45%), and neuropathy (38%).

Overall, excluding memory loss/cognitive issues, most respondents of the earlier survey said their care team was somewhat helpful at addressing their symptoms, with far fewer indicating that the physician attention was very helpful. However, the AEs assessed by this portion of the 2018-2019 survey were mainly physical: muscle/joint pain; fever/chills; and bone, joint, and soft tissue issues, among 8 other physical complaints. In contrast, just 4 mental health AEs—anxiety, depression, feeling overly tired, and memory loss/cognitive issues—were evaluated.

The persisting trends relative to patient satisfaction—contentment with management of their physical AEs and discontent with the oversight of emotional and mental health toxicities—are likely due in part to the large volume of patients seen in an oncology practice.

“These practices have a huge number of patients, and the amount of time [clinicians] have for patients is limited,” Shelley said.

These patterns can also be attributed to payment models’ focus on reducing hospitalizations and emergency department visits. For example, the Centers for Medicare & Medicaid Services’ Oncology Care Model rewarded participating practices that cut hospitalization and emergency department visits.3

“I think that’s why care teams have done a good job of triaging the kinds of [AEs] that might cause a patient to end up in the emergency department or hospital, and that’s important for patients, but then you have to go a little bit deeper into the other issues that cause quality-of-life or functional status issues for patients. These problems might not necessarily land patients in the ER but do affect their ability to [achieve] a strong quality-of-life and functional status,” Shelley said.

Participation Affects Outcome

The degree to which patients self-advocate during treatment can positively influence the level of care received for specific emotional and mental health AEs such as fatigue, anxiety, and depression, according to Shelley: “[Some patients] are just not being asked about these adverse events and are not as willing to bring them up on their own; therefore, they’re not being directed to resources to help them.”

Among the national sample of patients with cancer/survivors in the 2020 survey, “doctor knows best” was the default mentality. Respondents were more likely to rely on their doctor to select the best treatment option than to be involved in the research and decision-making process by almost a 3:1 margin (61% vs 22%), whereas 18% of patients were “somewhere in the middle.” Data from the national sample additionally showed that patients’ active participation in treatment selection translated to a higher sense of post-treatment preparation and a greater likelihood that patients would perceive the post-therapy medical care received as “excellent” compared with those who relied on their doctor (55% vs 50% and 59% vs 50%, respectively). However, just 53% of patients took advantage of any resource that their health care team offered to aid the treatment experience.1

Decision-making behavior differed between the national sample and patients who opted in to communication with NCCS (n = 479). Responses from this subgroup indicated that 35% of patients depended on their doctor, 35% took an active role, and 30% remained somewhere in the middle.

These data led NCCS to surmise that patients affiliated with an advocacy group such as NCCS have higher expectations of their providers and care and are more likely to seek out resources that can aid decision-making and self-advocacy. For example, 25% of NCCS-connected patients saw a psychologist or psychiatrist versus 8% of the national sample. This subpopulation was also more likely to obtain a post-treatment survivorship plan compared with nonaffiliated respondents (28% vs 17%).

The findings from the 2020 comparison of NCCS-connected patients and the national sample attest to the value of patient advocacy groups, Shelley said. Further, by stratifying the individuals who self-advocate and those who are reluctant to become involved, choosing instead to rely on their provider, the report also affirms that work must be done to improve the patient/survivor experience and must include patient-physician conversations about specific, often unaddressed AEs. “We need to build a system that provides the right resources for patients, even if they are not going to be the ones who research all the available treatments or how to address an adverse event or long-term effect that no one told them about,” Shelley said. “We and other patient advocacy groups educate patients and try to empower them to be their best advocate, and that’s incredibly important, but we have to also focus on the system, as well, to ensure that it still works for the people who can’t self-advocate.”


1. Cancer Survivorship Study. National Coalition for Cancer Survivorship. Published August 2020. Accessed September 4, 2020. https://www.canceradvocacy.org/wp-content/uploads/2020/08/NCCS-2020-State-of-Survivorship-Presentation.pdf

2. Cancer Survivorship Study. National Coalition for Cancer Survivorship. Published January 2019. Accessed September 4, 2020. https://www.canceradvocacy.org/wp-content/uploads/ 2019/09/NCCS-Survivorship-Survey-Final-Report.pdf

3. Oncology Care First model: informal request for information. Centers for Medicare & Medicaid Services. Accessed September 5, 2020. https://innovation.cms.gov/files/x/ocf-informalrfi.pdf