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How Much Do Older Americans Know About Shingles?
Introduction
Herpes zoster (shingles) is a common disease among older adults that can cause considerable suffering from acute and chronic pain, or postherpetic neuralgia (PHN). The incidence of herpes zoster in persons over age 65 years is more than 11 per 1000 person-years, with an estimated several hundred thousand cases occurring in older adults each year in the United States.1,2 Older adults with herpes zoster are at much higher risk than younger individuals for developing PHN.
The main goal of the treatment of herpes zoster in older adults is the reduction or elimination of acute pain and the prevention of PHN. Antiviral therapy with acyclovir, famciclovir, or valacyclovir reduces acute pain and the duration of chronic pain in older patients with herpes zoster who are treated within 72 hours of rash onset.3 The benefits of treating patients with herpes zoster who present more than 72 hours after rash onset are unknown. Acute herpes zoster pain management requires the use of standardized pain measures, scheduled analgesia, and consistent follow-up to adjust therapy.3,4 Patients with mild pain may be managed with acetaminophen or nonsteroidal agents. Patients with moderate-to-severe pain usually require treatment with a strong opioid analgesic (eg, oxycodone). A recent randomized clinical trial in 87 older adults with herpes zoster compared antiviral treatment with famciclovir in combination with 28 days of treatment with either oxycodone, gabapentin, or placebo. Oxycodone, but not gabapentin, significantly reduced acute shingles pain.5 If antiviral and analgesic therapy does not adequately control the patient’s pain, then the clinician can consider the addition of corticosteroids, a tricyclic antidepressant (TCA), or a neural blockade.3 None of these approaches have been shown to prevent PHN, but they may be useful in reducing acute pain.
The frequency with which herpes zoster and PHN occur in elderly persons implies that many older adults who have not had herpes zoster would likely know someone who experienced this condition. The more familiar lay term for herpes zoster is shingles. Health education efforts, such as the National Institute on Aging’s “Age Page” on shingles,6 may familiarize older adults with the disease and its painful consequences. These phenomena suggest that older adults may be knowledgeable about shingles, but there is no information about shingles knowledge in older adults.
Knowledge and attitudes regarding shingles in older adults may influence health behaviors. Investigations of other common conditions in older adults indicate that disease knowledge positively affects health behaviors and health outcomes.7,8 With the availability of treatment in the form of early antiviral therapy and prevention in the form of the zoster vaccine, shingles knowledge is important for older adults.3,9 Similarly, ascertaining the amount and type of knowledge of shingles among older adults is important for determining the level and content of public education efforts regarding this disease. We collected information to determine the level of knowledge of shingles among older adults in a nationwide, random sample of older adults who have not had shingles.
Shingles Survey
The information was collected as a telephone survey among a national probability sample of English-speaking adults age 50 years and older between August 16, 2005 and September 20, 2005, using random digit-dialing (RDD) sampling.10 The survey had quotas of 400 completed interviews with persons age 50-59 years; 400 completed interviews with those age 60-69 years; 300 completed interviews with those age 70-79 years; and 100 completed interviews with those age 80 years and older. The national telephone survey, data collection, and analysis were conducted by Schulman, Ronca & Bucuvalas, Inc. (Silver Spring, MD), under the direction of Dr. John Boyle. The study was supported by Merck & Co., Inc.
Shingles Survey Questionnaire
No validated, standard questionnaires appropriate for a national telephone survey on shingles existed prior to this survey. In order to collect accurate, relevant information, survey research experts worked with shingles experts and external lay advisors to determine the main questions to be answered by the survey. The team then assembled a working draft of the questionnaire by examining: (1) the shingles literature; (2) clinical and research experience with shingles; (3) questions used to study other similar diseases in other comparable surveys; and (4) existing relevant questions (such as pain scores) from accepted health surveys. Using all of these sources, a draft questionnaire was constructed. Once a draft questionnaire for the national survey was completed, a panel of shingles experts reviewed it, making changes and suggestions. Multiple iterations of review and revisions resulted in the final national questionnaire, which contained 19 questions.
Survey Results
The total sample frame was 42,419 households with in-service residential numbers, of which 1465 individuals were eligible and proceeded with the interview. The final sample number was 1064 persons who had not been diagnosed with shingles and who completed the full interview. The percentage of individuals by age distribution was 50-59, 35.6%; 60-69, 33.4%; 70-79, 22.6%; and 80 and over, 8.5%. The demographic characteristics of the sample are similar to national populations statistics for persons age 50 years and over (54.8% female; 84.1% white; 9.1% black; 2.8% Asian; 6.2% Hispanic).11
Amount of knowledge about shingles is shown in Table I. Only 315 (34.8%) of individuals were aware that chronic pain can develop after shingles. Of the 905 participants who had heard of shingles, the results of questions about cause (Table II), predisposing factors (Table III), and perceived risk (Table IV) are shown in the tables.
Regarding shingles transmission, 212 (23.5%) participants agreed somewhat or strongly that they could get shingles from someone who had shingles as compared to 449 (49.7%) participants who disagreed somewhat or strongly and 242 (26.7%) who were not sure. When asked if they thought they could get shingles from someone who had chickenpox, 230 (25.4%) participants agreed somewhat or strongly as compared to 355 (39.2%) who disagreed somewhat or strongly and 317 (35.0%) who were not sure.
Commentary
The majority of older adults in the United States had heard of shingles. Some older adults knew that pain and rash were the main symptoms. However, the depth of shingles knowledge beyond these findings was low. Surprisingly, only one-third of participants were aware that chronic pain could occur after shingles. Not surprisingly, most did not know the medical names for shingles or chronic shingles pain. Only one-third knew that shingles was caused by a virus, and very few individuals named aging or poor immune function as predisposing factors. Misconceptions about the transmission of shingles were not uncommon, with about one-quarter of individuals believing that one could get shingles from someone else who had shingles or chickenpox. We were unable to find another survey of shingles knowledge among individuals who had not experienced shingles for comparison.
Implications for Practice
What are the implications of this survey for clinical practice and public education efforts?
Although many older Americans are aware of shingles in general, long-term care patients and community-dwelling populations need to know more about the threat of chronic pain after shingles, the importance of a unilateral rash and pain as the symptoms of shingles, that the disease is caused by a virus, and the importance of aging and poor immune function as predisposing factors. They also need to learn the importance of seeking help immediately when the symptoms first occur in order to receive early antiviral therapy.
Increased level of knowledge about other medical conditions in older adults has been shown to positively influence health behaviors. Increasing level of knowledge about heart failure correlated with better self-care in patients with heart failure,7 and increasing level of knowledge about diabetes mellitus improved glycemic control. Furthermore, one study evaluated the benefit of educating patients with lymphoma in early self-diagnosis of shingles and subsequent self-referral for prompt treatment.12 When patients (n = 337) first presented with lymphoma in an outpatient clinic, the authors of one study gave the patients an explanatory leaflet and photograph about shingles. One to two years following the completion of therapy for lymphoma, the investigators used a questionnaire survey and medical record review to find that 56 (16.6%) of the study population developed shingles following the diagnosis of lymphoma. Patients who remembered having received the shingles education leaflets were more likely to have made self-referral to the hospital for prompt treatment (P < 0.001) and less likely to have developed PHN as compared to those treated in the community. The authors concluded that education of patients with lymphoma regarding awareness of early features of shingles was beneficial.
As with all surveys, this survey is subject to volunteer bias. The persons who agreed to participate may have had a different level of shingles knowledge than those who declined participation. Black, Hispanic, and Asian individuals were somewhat underrepresented in the sample as compared to the general older U.S. population. However, the sample was geographically stratified, national, and random. The questionnaire was not validated against a gold standard, but no such gold standard exists for shingles knowledge among the general public. However, the respondents easily understood the questions, the item nonresponse rate was very low, and the questions probed basic, well-known areas of shingles knowledge as put together by experts in different areas of shingles and survey research. These factors suggest that the questionnaire had reasonable face and content validity. Furthermore, it is possible that public knowledge about shingles has improved since the shingles vaccine became available four years ago. Whether direct-to-consumer advertising about the shingles vaccine has actually increased shingles knowledge significantly is not known. For future research, the survey should be repeated with additional questions about the vaccine.
Conclusion
While many older adults in the United States are aware of shingles, they know only modest amounts about the basic details of the disease. Educational efforts should target the cause, predisposing factors, symptoms, risk, and transmission of the disease, as well as the availability of effective antiviral treatment and vaccine prevention.
Dr. Schmader has received grant and consultant support from Merck & Co., Inc. Dr. Boyle has received grant support from Merck & Co., Inc. Dr. Boyle’s employer, Abt SRBI, was commissioned by Ogilvy Public Relations to develop, conduct, and report survey findings for the National Survey of Shingles and Older Americans in 2004. Dr. Schmader is at the GRECC, Veterans Affairs Medical Center, Durham, NC, and at the Department of Medicine, Division of Geriatrics, and the Center for the Study of Aging and Human Development, Duke University Medical Center, Durham, NC; and Dr. Boyle is at Abt SRBI, a global research and strategy organization in Silver Spring, MD.
Acknowledgments
Dr. Schmader was supported by the Durham VAMC GRECC and Grant K24-AI-51324 from the National Institute of Allergy and Infectious Diseases (NIAID).
References
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