APF survey reveals breakthrough cancer pain causes medical and financial hardships for cancer patients

Jan 29 2010

Pain is one of the most common, yet misunderstood and feared symptoms of cancer.  A new survey released today by the American Pain Foundation (APF) reveals that breakthrough cancer pain — sudden, temporary flares of severe pain that occur even when pain medication is used — is one of the most challenging aspects of having cancer, according to three out of four (75 percent) U.S. adults who have ever been diagnosed with cancer and experience this type of pain. The survey also found that breakthrough cancer pain negatively impacts quality of life, contributes to additional financial hardships, and can interfere with one's ability to cope with other aspects of cancer treatment.

"We're not talking about minor aches and pains," said Will Rowe, APF's Chief Executive Officer. "These severe flares of pain often strike without warning, leaving many people fearful of the next crippling episode and unduly burdening patients and their families. Effective pain management is critical to restoring the quality of life these individuals so rightfully deserve."

More than half of those surveyed (53 percent) rated their pain an eight, nine, or 10 out of 10, with 10 being the worst pain imaginable. While 44 percent said their pain is not adequately controlled, a vast majority (91 percent) believe their quality of life would "greatly improve" if they could get their breakthrough cancer pain under control.

The survey, commissioned by APF and conducted online by Harris Interactive®, is the first to explore the impact breakthrough cancer pain has on a patient's quality of life, medical treatment and finances among adults who have been diagnosed with cancer, are currently living with cancer-related pain, are taking medication to manage the pain, and experience sudden, temporary pain flares.

Breakthrough Cancer Pain Profoundly Impacts Quality of Life, Including Sleep

For a majority of cancer patients and survivors, breakthrough cancer pain disrupts sleep, negatively affects relationships with family members, limits one's ability to perform household chores, and lessens their desire to participate in activities they would normally enjoy. According to the survey:

• Nearly three in four (73 percent) said breakthrough cancer pain wakes them from a deep sleep at least once a month
• 76 percent reported that breakthrough pain affects their ability to perform everyday household chores
• 83 percent indicated that breakthrough cancer pain affects their desire to participate in certain activities

"Breakthrough cancer pain doesn't discriminate," said Rachel Lozano, age 26 from St. Louis, Missouri, who recently celebrated five years of being cancer free.  "It still affects my entire body, causing excruciating pain in my back, arms, legs, neck and intestines when I'm at school and even when I'm sleeping. The severity of pain often prevents me from sitting in my chair in class and disrupts my sleep — I never feel well rested."  

Breakthrough Cancer Pain Causes Medical and Financial Hardships

Breakthrough cancer pain also affects medical treatment and causes financial hardships.  Approximately 66 percent are taking more medication as a result of their pain, with half (51 percent) visiting their healthcare provider more often. A majority (73 percent) also reported that breakthrough cancer pain has increased their daily medical expenses; sixty-seven percent said they have experienced medical-related financial issues as a result of their breakthrough cancer pain; and more than one in three (37 percent) have increased medical care-related debt.

Breakthrough Cancer Pain Needs More Attention

The vast majority (95 percent) of those who currently see a healthcare provider for their cancer or cancer pain have discussed breakthrough cancer pain with their healthcare provider at some point. Incidentally, more than half (52 percent) said their healthcare provider has described breakthrough cancer pain as a normal side effect of cancer or its treatment.

"The phenomenon of breakthrough cancer pain presents a challenge for patients and their healthcare providers because it occurs even when a patient is taking the right dose of medication on a regular basis," said Russell K. Portenoy, MD, Chairman of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center and member of the board of directors for APF.  "Providers and patients should not accept breakthrough cancer pain as a normal side effect of cancer. More studies are needed to determine the most effective treatments to alleviate this pain."  

About Breakthrough Cancer Pain

Research suggests that up to two-thirds of people with cancer-related pain also experience episodes of breakthrough pain.(1)      

Breakthrough cancer pain is different from ongoing, persistent pain. Unlike persistent pain (sometimes called background pain) that develops gradually and lasts at least 12 hours a day, breakthrough cancer pain strikes suddenly — often without warning — and lasts for an average of 30 minutes. These intense flares of pain are often:

• Triggered by a specific activity or movement; for example, walking, dressing, changing positions, or even something as simple as coughing or sneezing
• Spontaneously occurring without warning

APF Unveils New Educational Initiative to Raise Awareness about Cancer Pain

To increase awareness of breakthrough cancer pain among patients and caregivers, APF is launching the following new resources:  

• An online toolkit to provide information about the basics of breakthrough pain, tips for ensuring pain management is an integral part of cancer care, treatment options, answers to commonly asked questions and much more
• A dedicated online chat and interactive webinar, When Cancer Pain Breaks Through, will offer more insight on breakthrough cancer pain for patients and providers
• APF's quarterly newsletter, Pain Community News, will feature articles on breakthrough cancer pain, as well as Top 10 Tips for Coping with Cancer Pain
• A roundtable discussion with leading oncology and professional medical allies to help renew dialogue on this important issue