Patients With Cancer Share Mixed Experiences With Immunotherapy


Patients with cancer were reported to have mixed expectations with immunotherapy as part of their oncology treatment.

Maryellen Potts, PhD

Maryellen Potts, PhD

Patients with cancer are divided on their expectations with checkpoint inhibitors, according to findings from a patient survey that were presented during the 47th Annual Oncology Nursing Society Congress.

The findings revealed that 27% of patients believe that their immunotherapy treatment will “help [them] live longer,” while 19% believe the therapy will “cure the cancer,” and 15% believe it will “improve [their] life quality.”

Over one-quarter of patients expressed conviction that this treatment strategy would be “effective” against their disease, while another 25% felt it would be “very effective.” Fifteen percent were unsure if it would be effective, 14% percent thought it would be somewhat effective, and 11% had no expectations.

Other patients responded that they believed the treatment would allow them “to have less side effects than chemotherapy,” “to stop the tumor from growing,” and “to delay the need for stronger chemotherapy.”

In terms of symptoms, tiredness was found to be the most commonly adverse event (AE). For those who experience an AE, calling the oncologists was the most common response (21%). However, 15% of patients responded by calling their oncology nurse, 10% discussed the AE with their family, and 9% chose to manage the AE by themselves. Eight percent of patients reported that they ignored their symptoms.

“We believe that the findings of this study well help improve the management of immunotherapy side effects and inform immunotherapy patient education and side effect reporting,” Maryellen Potts, PhD, University of Kansas School of Nursing, explained in a poster presentation of the findings.

Potts said that since the advent of immunotherapy, many studies have been designed to assess the efficacy of the agents. However, there is insufficient research documenting the patient experience while undergoing this treatment.

While checkpoint inhibitors have been reported to extend survival outcomes for patients with cancer, immune-related AEs have been known to compromise quality of life and it is necessary to understand patient expectations of treatment and of AEs in order to better communicate with patients, Potts said.

Therefore, investigators launched a cross-sectional survey querying patients about their knowledge regarding treatment, their expectations, their side effect experience and response, and information-seeking strategies. The free text responses were analyses with a content analysis.

A total of 294 patients responded to the survey. Among these, 31.1% had a lung cancer diagnosis, 17.2% had melanoma, and 14.4% had renal cancer. Of note, 34% were receiving pembrolizumab (Keytruda).

A component of the survey assesses how AEs were interfering with patients’ daily activities of living, which showed that 64% of participants experienced AEs. Nineteen percent of patients had tiredness, 10% had shortness of breath, 8.7% had feelings of sickness, 7% had pain, 7% had diarrhea, and 7% had other.

More than half of patients experienced AEs that did not immediately clear up and lasted for months. Among those experiencing debilitating AEs, 67.2% relied on their spouse or partner for support, but 13.6% reported that they did not have anyone to rely on.

In terms of education, 74% of patients learned about immunotherapy from their oncologist, while, among those who learned about immunotherapy from media, 66.7% percent reported that they found the information useful. Four percent of patients learned about immunotherapy from their oncology nurse, 3% from a physician assistant, 3% from media, 3% from the Internet, 3% from a nurse practitioner, 2% from a primary care doctor, and 2% from a primary care physician. Over half of patients described the conversation regarding immunotherapy with their health care provider as “very helpful.”

“Because these were predominantly older adults who were educated and had access to an National Cancer Institute–designated cancer center for treatment, exploring how these questions might be answered by those who are younger, not as educated, or without a regular access to a cancer center may be helpful,” Potts concluded.

Moving forwards, investigators hope to expand their research across a wider demographic and involve other institutions.


Potts M, Fleer R, Dionisi L, Wulff E, et al. Immunotherapy patient experience: a cross-sectional survey of patient knowledge, expectations, and information seeking strategies. Presented at: 47th Annual Oncology Nursing Society Congress; April 27-May 1, 2022; Anaheim, CA. Abstract P312.

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