Helping Cancer Patients and Caregivers Navigate Immunotherapy Treatment
Claire Saxton, MBA; Joanne Buzaglo, PhD; Sue Rochman, MA; and Alexandra Zaleta, PhD
Immunotherapy is one of the fastest growing areas of cancer research. The Cancer Moonshot 2020 Program calls for the creation of a Cancer Immunotherapy Translational Science Network to develop and implement immune-based approaches for preventing and treating adult and pediatric cancers.1 There are more than 500 open immunotherapy trials listed on ClinicalTrials.gov,2 and the list of immunotherapy drugs, as well as the cancers that are approved to treat, keeps growing.3
Currently, not all cancer patients are aware that immunotherapy, either through a clinical trial or as a prescribed treatment, might be one of their options. Those who do, may not be fully aware of how immunotherapy works or of the short- and long-term side effects they may experience. Additionally, as with other oncology treatments, patients may not be aware of the total cost of these new treatments or the patient-assistance programs that can help to offset those costs.
Methods Used to Gather Patient Insights on Immunotherapy
Quantitative data were obtained from an online survey and analysis of 367 evaluations of in-person immunotherapy workshops. Qualitative data and insights were gathered from a 2-day Immunotherapy Patient & Caregiver Summit.
The Cancer Support Community (CSC) is the largest professionally led nonprofit network of cancer support worldwide, reaching more than a million people annually. CSC is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. These aims are met through direct service delivery, research, and advocacy. CSC’s educational programs, which incorporate and reflect research and advocacy, are designed to help cancer patients make treatment decisions that align with their goals and values (Table).
CSC’s Frankly Speaking About Cancer (FSAC) series provides an in-depth coverage of topics relevant to those affected by cancer that are not otherwise available in a comprehensive format.4 The series—delivered through in-person workshops, print publications, online content, webinars, and a radio show—addresses topics such as cancer treatments and side effects and coping with the cost of care. Series topics are based on identified areas of need.
An online survey that CSC conducted, in 2014, found that 34.8% of cancer survivors knew the term immuno-oncology and 64.9% had heard of immunotherapy. The survey also showed that 84% of respondents were interested in learning more about these topics. In response, CSC developed FSAC: Your Immune System and Cancer Treatment for cancer patients and their caregivers. Thus far, FSAC has developed educational content on immunotherapy as a cancer treatment and immunotherapy options by cancer type, which is accessible on the CSC website (www.CancerSupportCommunity.org/immunotherapy); 4 print/downloadable booklets; 3 webinars; 22 in-person workshops; and a 2-day immunotherapy patient and caregiver summit.
Data From in-Person Workshop Evaluations
FSAC: Your Immune System and Cancer Treatment workshops provide an opportunity for patients and caregivers to obtain comprehensive information about immunotherapy, as well as learn how to communicate with their healthcare team about immunotherapy treatment options. In 2014-2015, local CSC/Gilda’s Clubs across the United States hosted 532 attendees at 11 in-person immunotherapy workshops. Of these 532 attendees, 367 completed evaluations that included personal demographics and self-reported pre- and postworkshop comparisons—72.5% of respondents were individuals with cancer, 20.5% were caregivers, and 5.8% were healthcare professionals. After the workshop, most respondents felt better equipped to discuss potential side effects (86.8%), have a conversation with their healthcare provider on treatment options (91.5%), and make treatment decisions in tandem with their doctors (87.9%). These findings were presented at the 2016 American Psychosocial Oncology Society Annual Conference.5
Strikingly, even though many workshop attendees described themselves as “partners” with their healthcare team when making decisions, many had no idea whether immunotherapy was an option for them. These and other findings reaffirmed the need for cancer patients to receive clear, relevant, and comprehensive information about immunotherapy. The findings also underscored the importance of promoting proactive communication between patients and their healthcare team about whether or not immunotherapy is, or might soon be, a treatment option.
Insights From Patient and Caregiver Summit
In November 2016, CSC held a 2-day Immunotherapy Patient & Caregiver Summit specifically for cancer patients and caregivers who have received immunotherapy treatments. The summit provided a unique opportunity for immunotherapy patients to share their experiences and for CSC to identify specific needs and concerns of patients who are on these treatments. The summit was attended by 30 individuals—18 patients and 12 caregivers from throughout the United States who had been selected through an online application process. Eight of the patients had blood cancers, 10 had solid tumors. Even after receiving treatment, patients and caregivers remain confused about what is immunotherapy and whether they have received immunotherapy or other novel therapies.
Tellingly, over half of the patients and caregivers who applied to participate in CSC’s immunotherapy summit did not understand that they were ineligible for the summit because they or their loved one had not been treated with an immunotherapy. CSC gained insight into how cancer patients and caregivers perceive the challenges, and hope, unique to immunotherapy from summit participants by through focus groups, written comments, and discussions in workshops on topics such as side effects, self-advocacy, and storytelling. The insights gathered also helped to identify gaps in immunotherapy patient education. Before arriving at the summit, the 30 participants were asked to review several of CSC’s FSAC immunotherapy materials. Utilizing a focus group format, participants also provided specific feedback on these materials.
Many of the participants had received or were receiving immunotherapy through clinical trials. Most knew very little, and some knew nothing, about immunotherapy before starting treatment. Discussions revealed that some patients and caregivers were not initially aware that immunotherapy differed from, and was not a type of, chemotherapy, while others didn’t know they would be receiving an infusion. For some, treatment also entailed learning to navigate the multiple campuses and buildings that comprise many large cancer centers. Patient experience was also complicated by the fact that many accessed these new treatments through clinical trials, which made it difficult for them to learn from other people’s experiences on treatments and side effects.
Side effects alone posed a unique concern. Some participants feared that telling their healthcare team about the side effects they were experiencing would result in their having to withdraw from an immunotherapy trial that was their only treatment option. This concern appeared to be compounded by the fact that patients and caregivers expected immunotherapy to be easier to tolerate than chemotherapy and to result in fewer side effects. This left them unprepared for the severe flu-like symptoms, overwhelming exhaustion, diarrhea, sleep disturbances, and endocrine problems many experienced. It also left them concerned about what these more severe side effects might portend.
After receiving immunotherapy, most patients and their caregivers understood the need for managing side effects quickly. Throughout the summit, patients and caregivers expressed a need for more detailed educational content on side effects and which symptoms they should immediately report to their healthcare team. Patients reported that the drug information they did receive was hard to understand and did not make a distinction between symptoms of their disease and symptoms that may be side effects of their treatment.
Patients and caregivers reported high levels of distress associated with balancing their life, an advanced-stage disease, and treatment. Only a few patients and caregivers reported being offered psychosocial resources to mitigate their distress. Patients also reported anxiety about living with uncertainty, as well as some cognitive distress because they did not “look sick” on immunotherapy while they were often very fatigued and medically fragile.
Another important theme that emerged from the summit was the need for patients and caregivers to have more clarity on how immunotherapy might impact other aspects of routine care from a primary care provider, another specialist, or in an emergency room setting. For example, it surprised patients that their other health providers might not know that they had to avoid live vaccines. To address this need, patient and provider educational materials and communication tools must be developed that guide patient and provider communication on what drugs, vaccines, or treatments can and cannot be used by cancer patients on immunotherapy.
Cost of Care
No discussion of immunotherapy would be complete without mentioning the total cost of new cancer treatments. The summit underscored the high degree of distress patients experience around the cost of cancer in general, and immunotherapy treatments, in particular, even within the context of a clinical trial. As many have previously noted, the total annual cost of care for immunotherapy and other novel treatments can exceed $100,000.6 The patient burden, through co-payments and co-insurance, can be tens of thousands of dollars. When patients do not have access to or do not know how to access patient assistance programs, these costs can quickly contribute to what is now widely referred to as the financial toxicity of cancer care.7
CSC’s Support Services for Patients and Caregivers
In June 2016, CSC launched its Frankly Speaking About Cancer Clinical Trials program (www.CancerSupportCommunity.org/ClinicalTrials). This landmark education series aims to build awareness among patients and caregivers about the importance of clinical trials as a viable treatment option. This program will be especially important for patients as the number of new, experimental immunotherapy treatments increases.
CSC provides services that can help patients and caregivers understand and manage their treatment, mitigate distress, and get help assessing and managing cancer costs. These include:
Table. Education Programs and Information Created for Cancer Patients and Caregivers (see PDF at the end of the article).
Analysis of survey data and immunotherapy workshop evaluations, along with insights from CSC’s Immunotherapy Summit demonstrate that patients, caregivers, and even primary care and emergency healthcare providers need education on immunotherapy treatment. This education needs to be bolstered with patient–provider communication support and tools to ensure that patients, caregivers, and all healthcare team members are working together to improve patient health. Finally, patients and caregivers need referrals to psychosocial support and educational resources, like those available from Cancer Support Community, to help them understand their disease and treatment, reduce distress, manage the total cost of care, and improve quality of life.
Over the next few years, findings from clinical trials that are now underway will shed light on the increased impact of immunotherapy on cancer—from prevention through treatment. In preparation for potential advances as well as inevitable setbacks and disappointments, new content needs to be developed to help cancer patients and caregivers navigate immunotherapy treatments. CSC is very close to releasing immunotherapy content for 3 additional tumor types, material in Spanish, and video testimonials from patients and caregivers who have experienced immunotherapy treatment. Our quantitative data and qualitative insights reinforce the need for more content to be distributed to additional patients and caregivers, as well as the need for continued improvement of this content over time.
CSC is also engaging in conversations with policy makers and other patient advocacy organizations on the impact of the total cost of these treatments on patients as our healthcare system braces for changes. This is a time in cancer care where high hopes meet unknowns. As we move forward, it will be critical to include the voices of cancer patients and caregivers in the development of new immunotherapy educational programs, as well as in finding solutions to the impact of systemic changes.