Despite Advances, Education Tools Still Needed for Immunotherapy Treatment

Brielle Urciuoli

While immunotherapy is vastly improving clinical outcomes for many cancer types, they often come with some severe side effects. As these agents continue to become more prevalent in the treatment of different malignancies, it is imperative that patients, caregivers and providers have access to self-care resources and educational tools.

Recently, the Cancer Support Community (CSC) conducted a survey to better grasp the challenges that patients, caregivers and clinical staff members face regarding immunotherapy. The goal is to ultimately use that information to craft an empowerment program that will improve the patient experience.

“As cancer treatment becomes more personalized, and the use of immunotherapy continues to expand, we believe it is important that patients and caregivers have access to educational and self-care management tools and community resources to make informed decisions, reduce cancer-related distress and receive optimal benefit across the continuum of care,” Maxwell Mulcahy, senior director, Strategic Initiatives at Cancer Support Community, said in an interview with CURE.

The researchers conducted three needs assessments using paper and online surveys among 95 patients undergoing immunotherapy treatment, 45 caregivers and 122 health care providers – such as oncologists, nurses and social workers – that focused on experiences related to treatment.

More than half (52.4 percent) of patients and 39.3 percent of caregivers reported that understanding how immunotherapy works, as well as managing its side effects, was “quite a bit” or “very much” of a problem during treatment. Similarly, about 40 percent of health care professionals reported this to be “quite a bit” challenging for their patients receiving immunotherapy.

Caregivers tended to face more difficulty finding information about immunotherapy and its side effects. And despite potential challenges of finding the relevant information, 42.9 percent of patients and 71.9 percent of caregivers said that learning about immunotherapy treatment was “quite a bit” or “very much” important to them.

“Understanding cancer treatments is complicated enough for patients exploring conventional chemotherapy and radiation.  With new technology, it is becoming increasingly difficult for patients to understand how immunotherapy works and whether it is the right option for them.” Mulcahy said. “A newer generation of immunotherapies also present new efficacy and safety profiles that have outpaced many of the resources currently offered by healthcare professionals, treatment centers and patient advocacy organizations.”

Even more patients and caregivers, 55 percent and 85 percent, respectively, reported that understanding how to cope with the symptoms and side effects of these drugs is “quite a bit” or “very much” important to them.

Nearly all (95 percent) of health care professionals said that it is “quite a bit” or “very much” important to them to understand immunotherapy treatment, how to cope with side effects as well as routine health and wellness management for their patients who are on immunotherapy.

When it comes to finding support for their patients receiving immunotherapy, 48.7 percent of health care professionals said that it was “quite a bit” challenging to do so.

These findings serve as the needs assessment for the CSC’s “Immunotherapy and Me” (IO&Me) program, which, through a multi-faceted initiative, provides critical care coordination and communication tools to support patients, caregivers and health care providers.

Other resources designed for the program include the Cancer Support Hotline; Frankly Speaking About Cancer, which provides educational materials for patients and caregivers; and My Tracker, a secure online platform that not only provides resources and information on immunotherapy and other general cancer topics, but also allows patients to track their immunotherapy-related side effects.

Despite all the progress that has been made, there is still much that needs to be done in this field. “As the results of the study suggest, education is still needed for patients and health care professionals,” Mulcahy said.
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