AHCPR Explains How Its Clinical Practice Guidelines Are Developed and Distributed

January 1, 1996
Volume 5, Issue 1

BALTIMORE--"Clinical practice guidelines link science and the bedside, helping the doctor and patient to make the best possible decisions," said Mary L. Grady, a technical writer-editor with the Agency for Health Care Policy and Research (AHCPR).

BALTIMORE--"Clinical practice guidelines link science andthe bedside, helping the doctor and patient to make the best possibledecisions," said Mary L. Grady, a technical writer-editorwith the Agency for Health Care Policy and Research (AHCPR).

Speaking at a panel at the American Medical Writers meeting, alongwith other staffers from AHCPR's Center for Health InformationDissemination, Ms. Grady said that her office has produced 17clinical practice guidelines in the last 6 years and has another"three or four" in development.

So far, only one--"Management of Cancer Pain"--concernsoncology. Others are under consideration, but Congressional budgetbattles make future plans uncertain, she said. "We are opento nominations for topics, but AHCPR chooses subjects that affectmany people and for which there are variations in treatment,"she said. "Also, since $6 million of the agency's budgetcomes from Medicare, we look carefully at any topic that affectsthe Medicare population."

The development process takes 18 to 24 months. Once a topic isselected, a multidisciplinary panel is picked, an analytic frameworkdeveloped, and literature reviewed.

"We try to put together a review panel of people who mayhave different views on treatment--like neurosurgeons and chiropractors,"said Christine Williams, acting director of the Center. The reviewpanel rates the strength of the evidence, thrashes out a finalanalysis, and offers its recommendations.

The approach, Ms. Grady said, "is explicitly scientific,based on a comprehensive literature search, and open to revisionduring the process. We also try to identify gaps in the knowledgefor future research."

Added editor Randie Siegel, "We try to present consistenthealth messages. Every concept must be scientifically efensible."

Four Versions

The guidelines are produced in four versions. The primary volumecomes as a paperback book, usually 60 to 120 pages long (the CancerPain Guideline is 256 pages). This version is intended as a referencework for physicians and other providers. The guidelines coverissues facing patients and doctors, and evaluate the evidenceavailable for diagnosis and treatment. The book also includessupporting documents and references.

For clinicians in a hurry, the guidelines are also distilled toa quick reference guide, 16 to 24 pages long. This can serve asa reminder for office use after the complete guideline has beenread.

Finally, there are two consumer versions, in English and Spanish.Both contain the same information, Ms. Siegel said, but the Spanishversion includes "culturally relevant graphics." Writtenat a sixth to eighth grade reading level, they are designed toinform patients or their caregivers and help them to make informeddecisions about their treatment.

The cancer pain patient booklets, for instance, explain the causesof pain and its treatment in lay terms. They define categoriesof drugs--like opioids, antidepressants, anticonvulsants--anddiscuss side effects. These booklets (at 16 to 24 pages) lay outthe benefits and risks of different treatments, suggest relaxationtechniques, and help the patient organize a pain control plan.

Once the panel produces a draft guideline, it takes about 12 weeksto polish the final manuscript, check references, typeset, andprint, Ms. Siegel said. Then they are distributed to clinicians,patients, families, policy makers and health-care organizationslike HMOs and PPOs.

The agency works with the private sector and medical groups toleverage the agency's distribution funds. "Since 1989,"Ms. Williams said, "we have gotten help from the privatesector for dissemination worth the equivalent of $13 million."

The YWCA, for example, printed and distributed the mammographybrochure to 10,000 women in 25 states. The Federal National MortgageAssociation (Fannie Mae) has handed out guidelines on mammography,BPH, and HIV to its employees. The American Academy of Pediatricssent 5,000 copies of the otitis media guideline to physiciansand 150,000 consumer brochures to parents. A mention of the depressionbrochure in Ann Landers' column deluged the agency with 69,000requests in the first week alone.

The guidelines process doesn't end when the booklets are liftedoff the loading dock. "We look for feedback from readers,"Ms. Williams said. "Doctors tell us that even the quick referenceguide is too long. They don't want to read through 25 pages whena patient is in the office. For the urinary incontinence update,we hope to produce new sections aimed at directors of nursingand nursing aides to get the word out to people at the bedside."

Practice Guidelines Available Electronically

The Agency for Health Care Policy and Research (AHCPR) is movingto make its practice guidelines available electronically, saidGerri Michael-Dyer, chief of the Publications and Scientific InformationBranch of the Agency's Center for Health Information Dissemination.

"A free electronic service is available that provides accessto the full text of the guidelines, either by dial-up or throughthe Internet, and we are beta testing an AHCPR World Wide Website that will be available by the end of January," Ms.

Michael-Dyer said. (Call 800-358-9295 and ask for "OnlineAccess for Clinical Practice Guidelines," Pub. No. 94-0075.)A prototype CD-ROM containing all versions of the first 15 guidelineshas been released to medical libraries, she added.

Sometimes new routes of distribution lead to useful insights.She said that at electronic kiosks placed in 1,800 Wal-Marts andother pharmacies, the most requested consumer guideline was forsickle-cell anemia in newborns, a subject that had not had muchdemand in print.