What Do Patients and Caregivers Know about Immunotherapy?

Inspire’s Immunotherapy Awareness and Perceptions Survey

According to a 2012 study, patient activation means “having the knowledge, skills, and confidence to manage one’s health.”  The study confirmed that better health outcomes are typically associated with greater patient knowledge and activation.1  As the field of oncology continues to embrace personalized medicine with immuno-oncology and immunotherapy, patient activation is essential.

Today, in a world with content flooding every single channel and device we own, consumers are either over-informed, or under-informed.  A wide range of information sources, ranging from news outlets to Internet websites of variable credibility, are discussing immunotherapy.  What do oncology patients and caregivers know?  Are they able to sort through the jumble of information out there?  Have they been provided with enough information to understand immunotherapy?  For example, genetics, the study of genes and their role in the creation and manipulation of proteins that perform the functions of cells, is needed for understanding how mutations in the genetic code cause cancers.  Do oncology patients understand that genes control signaling pathways?  What grasp do oncology patients have of the fundamentals of targeted personalized treatment?  Do they even know and understand words like “biomarker” and signaling pathways like PDL-1 expression and the CTLA-4 pathway?  Making choices in cancer treatment now depends on an understanding of genetics, gene expression and the immune system.

Unfortunately, our education system is not keeping up.  A review of current national educational standards for teaching genetics in elementary through high school do not cover mutations, gene expression or other important concepts in genetics.2  And those who are facing cancer now, both patients and their caregivers, are playing catch-up.  For example, cancer patients and their caregivers today face the challenge of understanding tumor testing and what the results mean as well as technical concepts like biomarkers and PD1 expression.  Access to information that explains these concepts without jargon is limited.

Knowledge and Understanding of Cancer Patients on Inspire

Inspire creates support communities for cancer patients and caregivers (over 275,000), in some cases partnering with cancer-focused nonprofit patient advocacy organizations (https://cancer.inspire.com).  In spring 2017, Inspire implemented a survey to explore what those affected by cancer know about immunotherapies in general, and with regards to the specific treatment options, treatment usage and clinical trials experiences.  Inspire communities invited to the survey include, Bladder Cancer Advocacy Network, Head and Neck Cancer Alliance, Kidney Cancer Association, American Lung Association, the Melanoma Community and Us TOO Prostate Cancer.

Survey respondents were either cancer patients or caregivers of someone with cancer and the survey took approximately 10 minutes to complete.  Eight hundred and twenty-three (823) patient and caregiver members completed the survey.**  Thirty-two percent (32%) of the respondents were affected by cancers of the bladder, 7% of the head and neck, 25% of the lungs, 4 % melanoma, 3% of the renal cells and 29% of the prostate.

Unaided recall of immunotherapy/immuno-oncology treatments

All respondents were asked an unaided question to assess their awareness of immunotherapy treatments.  The question specifically asked, “Please think of all the immunotherapy/immuno-oncology treatments that are currently available as prescription medications or in development that you are aware of.  Please list as many as you can recall (whether you use them or not).  Please be sure to include medications administered at infusion (IV) centers, as well as those obtained at pharmacies.”

Over 40% of the sample could not think of any immunotherapies/did not answer the question.  Of those who did respond, Opdivo, was most frequently reported while Keytruda was a close second.  Further, many respondents identified non-immunotherapy products as immunotherapies.  Next, we asked aided awareness questions (questions with cues or prompts) to assess respondents’ recognition of key immuno-oncology terms and approved immunotherapies.  We asked respondents to rate their level of knowledge about a number of terms such as “immunotherapy,” “PD-1 pathway,” “PD-L1 expression,” “T-cells,” “CTLA-4 pathway” and others.  In general, most respondents (95%) had at least heard of the term “immunotherapy,” most of whom have at least a base knowledge of what the term meant.

Respondents’ knowledge levels decreased as the terminology became more technical.  For example, smaller percentages had any knowledge of the terms t-cells (56%), targeted therapy (55%), biomarkers (54%) and immuno-oncology (54%).  As the concepts became more specialized, involving concepts related to genes, proteins and pathways, respondents were less knowledgeable, only 25% had heard of, and had some knowledge, of the term PD-1 pathway, 22% for PD-L1 expression and only 9% had some or thorough knowledge of the term CTLA-4 pathway.

If patients and caregivers had never heard of immunotherapy or had heard of it but didn’t understand it, they wouldn’t ask their doctor about immunotherapy.  Of those who had never heard of immunotherapy or had heard of it but didn’t understand what it was, 76% were not likely to ask their doctor about using immunotherapy.

Moreover, the lack of knowledge seems to affect patient and caregivers discussing treatment through clinical trials.  Only 18% have done so with their physician.  Our research confirms that 97% of those who had spoken to their physician about immunotherapy clinical trials had at least some knowledge of immunotherapies.

These figures indicate a significant need to address awareness and increase knowledge around the basics of immuno-oncology and immunotherapies.

What can be done?

At an conference on health literacy at the US Department of Health and Human Services, Howard Koh, MD, former HHS Assistant Secretary asked the question, “What does it take to have the capacity to process and understand health information in order to make appropriate health decisions?”  One answer:  “Stop assuming that people understand health information, but instead, assume that people are at risk for not understanding….” 3  Our data indicates that the health information and words used to explain immunotherapies and the science behind immuno-oncology are not well understood.

How do patients and caregivers catch up?  Recently published research suggests that patients’ connections to nonprofits may benefit and educate them as compared to unconnected patients and caregivers.  In the research, patients with multiple myeloma who were connected to the nonprofit, the Multiple Myeloma Research Foundation, were compared to multiple myeloma patients who were not connected.  Researchers found that those connected with the Foundation were better informed about their disease than those not connected.  In fact, connected patients had knowledge of treatment options, of diagnostic testing and an understanding of genetics.  These positive self-reported responses were significantly different from those of patients who were not associated with the Foundation.  The researchers surmised that early learning on the part of connected patients had been critical since diagnostic tests can impact treatment options, prognosis and the assurance of having pre-treatment cancer/tumor samples (increasing the likelihood of access to further treatment options). 4

Why is this important?

Deficits in genetic knowledge, gene expression and understanding of the immune system and immunotherapy may interfere with informed consent and patients’ willingness to utilize immunotherapy.

Our survey indicates that these deficits also interfere with asking physicians for immunotherapy treatment and with interest in clinical trials using immunotherapy.  Addressing knowledge gaps may make a difference in health outcomes and patient activation in oncology.  Patients who are educated about the landscape of their cancer feel more empowered as they make decisions about their treatment options and typically have better outcomes.  Bridging this knowledge gap requires work from patient organizations, life science corporations and healthcare providers.

Read more and access our infographic Inspire’s Immunotherapy Awareness and Perceptions Survey here.

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1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326094/)

2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001739/

3 https://www.nap.edu/read/21714/chapter/3

4 http://www.gotoper.com/publications/ajho/2017/2017mar/understanding-differences-in-critical-decisions-in-the-multiple-myeloma-patient-journey-in-the-era-of-precision-medicine