Survey reveals low awareness of postherpetic neuralgia amongst Americans

May 7 2010

The American Pain Foundation (APF) announced today at the American Pain Society (APS) Annual Meeting the results of a national survey that showed postherpetic neuralgia (PHN), also known as after-shingles pain, continues to be a condition with low awareness amongst Americans, demonstrating a need for health care provider (HCP) intervention. Shingles is caused by a reawakening of the chickenpox virus and anyone who has ever had chickenpox is at risk for shingles. The condition affects approximately 1 million people in the United States every year, and one in five of those who suffer may go on to develop PHN, which results from nerve damage caused by the shingles rash. For some, the PHN pain can become so severe that it significantly impacts quality of life. PHN is one of the most common causes of pain-related suicide in older Americans.

The online survey found that while 60 percent of respondents said their HCP mentioned burning, aching, sharp or itching pain in relation to their shingles outbreak, only one-third reported being told by a HCP about the possibility of developing PHN, suggesting that individuals are not being warned about the condition early enough or at all.  

"The results of this new survey demonstrate the lack of knowledge about PHN among people who have had shingles," said Will Rowe, chief executive officer of APF. "The reported delay in diagnosis and treatment of PHN underscores the need for education, which is why the American Pain Foundation is partnering with the Patchwork of Hope Network, an educational campaign designed to raise awareness of this debilitating condition."

The Patchwork of Hope Network is raising awareness of PHN around the country through live educational events, training programs for aging and health care professionals and an interactive website, www.AfterShingles.com, where visitors can learn more about the condition and available treatment options.

Key findings from the 414 people surveyed who have had shingles include:

A Lack of Education and Communication about PHN

• While nearly 60 percent of respondents said their physician mentioned  burning, aching, sharp or itching pain in relation to their shingles outbreak, only one-third reported being told by an HCP about the possibility of developing PHN
• Of the survey respondents who first experienced after-shingles pain, almost half (42 percent) did not think that it was related to their shingles rash in any way

The Prevalence of PHN

• Fifty-one percent of survey respondents reported experiencing pain, shortly after or within months, after their shingles rash went away
• Among respondents who experienced PHN, 16 percent reported that after-shingles pain lasted for 15 weeks or more
• More than half of respondents said the pain they experienced after having shingles was more frustrating than actually having shingles

Treatment Option Preferences

• More than 70 percent of respondents were interested in using a topical treatment, alone or in combination, to relieve after-shingles pain

Survey Design

In April 2009, 414 Americans who have had shingles were surveyed using an Internet-based survey questionnaire. In keeping with ethical standards dictated by the Electronic Communications Privacy Act, and those upheld by the Council of American Survey Research Organizations, the survey was disseminated electronically to e-mail addresses obtained from respondents who have self-opted to participate in research surveys. Kelton Research, a full service global insights firm, conducted the survey. This survey was made possible with support from Endo Pharmaceuticals.