Latest Health Union Survey Finds Lung Cancer Patients Stressed and Scared but Hopeful
“Lung Cancer In America” Participants Say Relationships Matter for Lung Cancer Care
March 1, 2017
By Editorial Team
Lung Cancer In America 2017, a newly released national survey by Health Union conducted with more than 800 individuals diagnosed with lung cancer, reveals high levels of stress and anxiety, even among those declared as having no evidence of disease (NED). The survey finds patients are satisfied with their health care professionals (HCPs), and see them as thorough and understanding.
The survey was released in conjunction with the launch of a new Health Union online community, LungCancer.net.
Lung cancer is the leading cause of cancer-related deaths in the United States. More people die each year from lung cancer than colon, breast, and prostate cancers combined. The American Cancer Society estimates that in 2016, 224,390 were diagnosed with lung cancer, with about 158,080 deaths. Statistics reveal some good news, however, with new cases of lung cancer falling on average 1.8 percent each year over the last 10 years. Death rates are also declining and survival rates increasing. Death rates fell on average 2.2 percent each year between 2004 and 2013.
Both symptoms and treatment can exhaust people experiencing lung cancer, according to Lung Cancer in America respondents. The most common reported symptoms were fatigue (80 percent), shortness of breath (67 percent), trouble breathing (47 percent), cough (45 percent), and pain or discomfort (43 percent). Of the symptoms experienced, those rated as the most severe were unexplained weight loss (37 percent), recurring infections (34 percent), pain or discomfort (32 percent), and fatigue (31 percent).
The survey also found dealing with cancer and the accompanying treatment requires multiple sources of support. Family, friends, and health care professionals have a large impact on a patients’ quality of life. Sixty-three percent of survey participants report having a caregiver actively involved in their lung cancer management. Caregivers provide emotional support (87 percent), transportation to and from appointments (74 percent), and help with daily life tasks (52 percent). On top of logistics, patients need help dealing with the high levels of stress and anxiety. Sixty-four percent say talking with family or friends is one of the most common coping strategies.
The support of the health care team cannot be overstated, according to respondents. Top areas of satisfaction with HCPs center on communications and support. The aspects of care where HCPs frequently meet patient needs are: including family and friends in discussions (80 percent), explaining what will happen during testing (79 percent), providing easy-to-understand test results (77 percent), and listening to fears and concerns about having lung cancer (74 percent).
Even with this high level of satisfaction with HCPs (86 percent), there appears to be a gap in information. The cost of cancer care is a common concern cited in other studies, but patients are generally unaware of resources available to help. Sixty-two percent of respondents spent more than $1,000 out-of-pocket on lung cancer-related treatments and therapies. Only 29 percent of respondents have used any kind of patient resource, with the primary reason cited as “I was unaware.”
“The fact that these [financial and patient support] resources are available, but individuals are unaware they exist illustrates the need for a site like LungCancer.net,” said Tim Armand, President and co-founder of Health Union. “It is a place where people with lung cancer can come together to exchange information and learn from each other.”
Additionally, survey results found that, after HCPs, lung cancer-specific websites were the second most popular resource to learn about or manage lung cancer at 45 percent.
On top of experiencing the difficulties of the symptoms and treatment, survey respondents said the uncertainty of lung cancer is ever-present, even after achieving NED, and there is always the chance that lung cancer may return. Survey data shows this to be a continuing source of anxiety and stress and underscores how the need for emotional support continues, even after successful treatment.
Even with the support of friends and family, lung cancer patients reported they need emotional support and connections with others to help them through their journey. Sixty percent of respondents agree or strongly agree that “others do not understand what I’m going through with my lung cancer.” Forty-five percent agree/strongly agree that “I feel like a burden when I share my concerns or feelings with others.”
“Clearly, the data demonstrate an unmet need for improved support for lung cancer patients,” added Armand. “This survey underscores the need for a platform like LungCancer.net to offer a source of support, validation, or comfort that patients and caregivers may not receive elsewhere.”
“It was very important for me to connect with other lung cancer patients,” says LungCancer.net patient advocate Dusty Donaldson. “Not only do patients encourage and empower each other, they learn from each other’s experiences.”
A summary infographic of the survey results is also available.
The Lung Cancer in America 2017 survey was conducted online between September, 2016 and January 2017. More details about the survey are available upon request; email Insights@health-union.com.