Survivor Views, an initiative launched by ACS CAN in January, established a national cohort of cancer patients and survivors to complete a series of six individual surveys focusing on a range of public policy issues important to the cancer patient and survivor community. The results of the first survey, which are being released today, focus on patient experiences treating the symptoms and side effects of their cancer and access to supportive or palliative care services.

The survey found patients and survivors experience a wide range of symptoms and side effects as a result of their cancer care. While effective treatments exist for several of these physical and psychological side effects, the survey results indicate many patients and survivors are not accessing them for a variety of reasons.  Fifty-five percent of respondents reported physical limitations or difficulties completing tasks as a result of their cancer care, but only 26 percent reported being referred to physical, occupational or speech therapy by their health care provider. Similarly, 51% of patients reported anxiety or depression as a result of their cancer while only 10% reported being referred to a mental health provider for additional therapy.

Many survivors also reported adverse symptoms or pain well after their active treatment concluded. Of survey respondents who reported pain or other symptoms during treatment, two-thirds noted the symptoms resulting from their cancer or treatment continued well after active treatment concluded.

“Too many cancer patients and survivors are not receiving the appropriate treatments and therapies that would alleviate the side effects of their cancer care,†said Lisa Lacasse, ACS CAN president. “At a time when our health care system is facing incredible pressure to evolve, it’s clear that our approach to health care must become more holistic and provide patients with better coordinated options to alleviate the physical and psychological side effects of a cancer diagnosis. This coordinated, patient-centered care must continue well into survivorship as patients continue to live with the lasting side effects of their cancer and its treatment.â€

Barriers to accessing prescription drug treatments to alleviate pain that often accompanies cancer treatment were also apparent in the survey results. Over half of cancer patients or survivors participating in the survey who have been prescribed opioids in the last 12 months voiced concern about their future ability to access appropriate pain medications. More than 40 percent of these respondents had already experienced barriers to accessing pain treatment.  Respondents reported these barriers had direct adverse impacts on their lives, including inability to work or participate in family or social events, setbacks in their ongoing cancer treatment, and the need for additional emergency care to treat uncontrolled pain.

“Survivor Views is providing ACS CAN with timely, firsthand information that will drive our advocacy efforts forward, giving cancer survivors a voice in the issues directly affecting their lives,†Lacasse said. “The release of the first survey results focusing on patient experiences with treating pain and other side effects associated with a cancer diagnosis provides valuable insight into the shortcomings patients face in trying to manage their symptoms on a day-to-day basis and highlights that symptoms can extend months and years after treatment concludes.â€

Never Give Up!!!