Only 17% of lung cancer patients were aware whether they had tested positive for a genetic mutation, according to a recent survey conducted by Health Union. The results help to illustrate that the general patient population is still largely unaware of the fact that therapies currently exist that can attack certain mutations such as EGFR, KRAS, and ALK.
“Many patients don’t know treatment types available to them beyond ‘chemotherapy,’” explains Tim Armand, President and Co-founder of Health Union. “They don’t understand how targeted therapies and immunotherapies are different. Knowing tumor mutations and biomarkers are crucial for many new therapies, so awareness levels among both patients and physicians of testing options need to be increased. These mutations and biomarkers are the identity of a cancer. Pharma companies should help patients understand what they need to know, what questions to ask, and what tests to request in order to get the right treatments for their cancers.”
Health Union hosts online patient communities for 12 different therapeutic areas. Each year, the company also conducts “In America” surveys for each of the groups it serves that provide an in-depth look into the entire patient journey of people diagnosed with these diseases. The Lung Cancer in America 2017 survey was conducted between late 2016 and January 2017 to gather insights from more than 800 individuals with lung cancer. Of the respondents, 67% had non-small cell lung cancer (NSCLC), 13% had small cell lung cancer (SCLC), 20% had another form of lung cancer, and 2% of respondents were still in the process of reaching a final diagnosis. About one-third of respondents had been diagnosed for at least three years, with 45% having no evidence of disease (NED) at the time of the survey.
No matter what the status of their disease, patients expressed higher-than-average levels of stress: 55% of patients who were NED said their stress level was either “very high” or “high” while 71% of patient who were not NED expressed a similar sentiment.
“Our survey demonstrates that for NED patients the uncertainty of lung cancer is ever-present,” says Leslie Beth “LB” Herbert, PhD, Health Union’s Senior Director of Insights & Clinical Programs. “There is always a chance that lung cancer can return, even after one, three, or five plus years. The data show this is a source of anxiety and stress for patients, even after achieving NED. Each scan, each check-up—they worry about results. This data underscores the need for emotional support continues even after treatment has been successful.”
That is one reason why the majority of respondents (63%) say they have a caregiver who is actively involved in the management of their lung cancer. Overwhelmingly, these caregivers provide emotional support (87%), but they also help with transportation to and from appointments (74%), managing daily life tasks and activities (52%), managing medications (32%), among other things.
“Even with the support of friends and family, lung cancer patients need emotional support and connections with others to help them through their journey,” says Sara Hayes, MPH, Director, Community Development of Health Union’s LungCancer.net. “Sixty percent of lung cancer patients agree or strongly agree that ‘others do not understand what I’m going through with my lung cancer,’ 45% agree/strongly agree that ‘I feel like a burden when I share my concerns or feelings with others,’ and 32% agree/strongly agree that ‘I feel alone.’ Clearly, our data demonstrates an unmet need for improved support for lung cancer patients.”
Patients Want More Info at Time of Diagnosis
Another thing that could help ease patients’ stress level is more information. About 92% of respondents wished they knew more about the impact of lung cancer and its prognosis at the time of their diagnosis. That includes information on many things that pharma companies could help provide, including questions they should ask their doctor (39%), different types of lung cancer treatments and how they work (35%), and financial assistance for treatment costs (26%).
However, Armand adds that pharma companies should keep in mind that lung cancer patients are not typically in the best state of mind to receive information when they receive their diagnosis.
“Fear and distress impact people’s ability to comprehend information,” Armand explains. “Reading levels decline, even among highly intelligent, highly educated people. Patients can’t hear what a doctor is saying, when their heads are spinning and hearts are pounding. Clear, simple, straightforward messages are important. And, offer hope—balanced with reality of course. Pharma companies should reinforce that there are advancements in treatment—that new therapies offer options that weren’t available years ago.”
Perhaps pharma companies could learn from how healthcare professionals (HCPs) interact with their patients, because respondents were overwhelmingly satisfied (86%) with the thoroughness of their HCP. In particular, patients are satisfied with their HCPs’ ability to:
- Include family and friends in discussions (80%)
- Explain what will happen during testing (79%)
- Provide easy-to-understand test results (77%)
- Listen to fears and concerns about having lung cancer (74%)
- Explain potential side effects of treatment (73%)
“These satisfaction rates are much higher than observed across our other conditions (Multiple Sclerosis – 51% very satisfied; Rheumatoid Arthritis – 44% very satisfied; Type 2 Diabetes – 42% very satisfied), and the timeframes from experiencing symptoms to scheduling appointments and ultimately to diagnosis and treatment are much shorter, compared to other conditions we serve,” Dr. Herbert says. “It was refreshing to see our data demonstrate that lung cancer patients are getting timely care.”
One area that scored low marks in the patient-HCP relationship, however, is their doctor’s ability to assist with managing financial challenges or recommending patient assistance programs. The majority (56%) of patients said their HCP’s thoroughness in this area was only “adequate” or worse.
Cost of Treatment and Need for More Resources
About one-fourth of respondents have spent more than $5,000 annually on lung cancer treatments, with only 27% using a manufacturer-sponsored financial support program. Close to half (45%) of respondents were unaware that these types of programs even existed for lung cancer treatments. However, 31% felt they didn’t need any kind of assistance with another 10% saying they didn’t use one of these programs because their treatment was covered by Medicare/their insurance or because they were in a clinical trial.
“Costs of cancer care is a common concern/challenge, but patients are generally unaware of resources available to them,” Armand says. “Only 29% of respondents have used any kind of patient resources (financial or non-financial). Helping patients access resources available to them is one thing pharma companies can do to relieve one source of stress and anxiety for patients and caregivers.”
Right now, respondents aren’t turning to pharma manufacturers for information as only 11% use treatment or manufacturer websites to learn more about lung cancer or how to manage it. The vast majority of respondents (70%) rely on their doctor/HCP for information. Other popular resources include lung cancer-specific websites (45%), social media outlets (31%), and lung cancer patient or advocacy websites (29%).
How Patients Make Treatment Decisions
The number one topic patients desire more information about is new lung cancer treatments with 42% of respondents expressing interest in this topic. Pharma companies hoping that advertising will help patients choose a new treatment, however, are out of luck. Without question, patients say that advertising does not affect treatment decisions—87% feel it is “not at all influential.”
Unsurprisingly, patients rely most on their HCP’s recommendation, with 77% saying their input is “extremely influential.” Other important factors include the treatment’s impact on lung cancer, the long-term outlook, and whether insurance covers treatment.
“Overall, this data underscore the importance of listening to and understanding the experiences of real patients,” Armand offers. “Too often, pharma companies rely on key physician leaders to represent patient perspectives or leverage qualitative insights from small numbers of patients to guide efforts. Large-scale patient surveys, like Lung Cancer in America, provide important information and insights about patient experiences, behaviors, and needs across geographies, socio-economics, and other factors.”