Publications
APS Bulletin • Volume 8, Number 4, 1998
Patient Advocacy Groups
Robert J. Gatchel, PhD, Department Editor
Living with Chronic Headache Pain: The Invisible Handicap
Suzanne E. Simons, MSMC BS
Chronic headache is one of the leading causes of illness and disability in the United States today. According to recent polls, more than 45 million Americans endure headache on a recurrent basis. It is not surprising that headache is one of the most frequent disorders encountered by physicians in outpatient settings. Each year, Americans make 80 million visits to doctors' offices because of this disability.
Quality-of-life studies have revealed that chronic headache disorders cause significantly more morbidity and functional impairment than was previously thought. This, in turn, costs employers $50 billion per year in worker absenteeism, medical expenses, and lost productivity.
Chronic headache is a complex health problem, often frustrating to diagnose and treat. The National Headache Foundation (NHF) provides information and referral to headache sufferers who may encounter disbelief, apathy, and disdain from healthcare providers in their search for relief. Commonly, headache sufferers bounce from doctor to doctor seeking a sympathetic practitioner, a consensus regarding diagnosis, and treatment expertise.
The role of the physician
The physician-patient relationship is critical in the management of those with chronic disease. Through a physician's guidance, a patient can assume responsibility for implementing and monitoring the therapeutic regimen and make needed changes to gain control over his or her disease. In addition to diagnosing and treating the patient's medical condition, the physician is also pivotal in providing education, communicating effectively, and offering reassurance and hope to the patient. Klassen and Berman (1991) surveyed headache sufferers to generate their expectations prior to physician visits. The majority (90%) sought pain relief from their physicians, 66% sought medication and related advice, 43% looked for attentive listening, and an almost equal number needed reassurance about the absence of serious disease.
The role of education
Patients' reluctance to complain about pain is another barrier to effective relief. Frequently, patients are embarrassed to share details that could cast them in an unfavorable light. For example, they don't talk about the number of over-the-counter products or natural remedies they are taking or about the overuse of prescription products. In addition, patients are afraid to ask "stupid" questions or ask the physician for clarification if they are given complicated information. Patients need education about preventable causes of headache as well as strategies for their participation in treatment, for example, by providing a good medical history and feedback about treatment efficacy. Headache sufferers learn how to reduce the frequency, severity, and duration of their headaches. In addition, it is helpful to teach patients about headache's impact on their quality of life.
Education from physicians about the treatment of headache is equally important. Effective diagnosis and treatment can reduce the number of office visits. Other ways to minimize expenses include eliminating unnecessary tests, prescribing appropriate medications, and recognizing when to refer to a headache specialist and when care in an inpatient hospital setting is medically indicated.
Role of the National Headache Foundation (NHF)
Founded in 1970 by a group of physicians, the NHF currently has 20,000 members—1,000 of whom are healthcare providers. Funding comes from membership dues, donations, and grants. The NHF is dedicated to three important goals:
- to serve as an information resource to headache sufferers, their families, the physicians, and other healthcare professionals who treat them
- to promote research into potential headache causes and treatments
- to teach the public that headaches are a legitimate health problem
One of the NHF's most important initiatives was the development of the Standards of Care for Headache Diagnosis and Treatment. This document establishes a set of standards for the healthcare provider to ensure comprehensive and consistent delivery of medical care for headache sufferers. The standards set forth criteria for diagnosis, treatment, and hospitalization when these measures are medically indicated.
Another important publication is the Therapeutic Guide for the Treatment of Headache. This guide aids in prescribing approved pharmaceuticals, as well as drugs approved for other uses, that can prove helpful abortively and prophylactically to headache sufferers.
With the recent approval of several new medications for headache and with other products in the pipeline, the NHF will update these publications every 6 months to provide the most current information. A consumer version of the Standards of Care is due out later this year.
NHF offers an extensive list of services to headache sufferers, including award-winning resources such as the quarterly newsletter, NHF Head Lines, and a Web site at www.headaches.org. Its toll-free line assists nearly 50,000 callers annually, and its support group program is operating in more than 30 cities across the country. Educational brochures and audio- and videotapes are available. Upon request, callers can obtain a state list of NHF physician members. In addition, NHF funds research, sends representatives to professional association meetings, and awards the Seymour Diamond Clinical Fellowship in Headache Education.
National Headache Awareness Week was held June 7-13, 1998. This was an important vehicle for attracting nationwide attention to the problem of headache. The theme was "Making Headway in Headache Relief."
Conclusion
Headaches dramatically affect lives. The good news is that a strong patient-physician partnership can control 95% of all headaches. Using the resources of the National Headache Foundation can improve the quality of life for the 45 million Americans who live with the invisible handicap of headache.
We appreciate this opportunity to communicate with the members of APS and look forward to collaborating on joint projects of mutual interest in the future.
References
Klassen, A.C., & Berman, M.E. (1991). Medical care for headaches: A consumer survey. Cephalgia, 11 (Suppl. 11), 85-86.Suzanne E. Simons is executive director of the National Headache Foundation.