Now researchers at Ohio State University have developed a series of easy-to-read booklets that can help explain medication-related issues for people with developmental disabilities, children, the elderly, and people who read English as a second language.
The booklets were designed specifically for people with developmental disabilities and focus on the medicines they are most likely to take, specifically behavioral and anticonvulsant medicines.
But Michael Aman, one of the co-authors of the booklets, hopes they reach an even wider audience of people who need help understanding their medications, as well as understanding their rights and responsibilities in dealing with doctors.
"It's difficult to give patients informed choices about their medications if they have cognitive or language limitations," said Aman, who is professor of psychology and psychiatry at Ohio State's Nisonger Center for Mental Retardation and Developmental Disabilities.
"We think these bookletss will help patients work with their doctors and give the patients a voice in their treatment."
Aman wrote the booklets with Betsey Benson and Kenneth Campbell, both faculty coordinators at the Nisonger Center, as part of Project MED (Medication EDucation).
Project MED, funded by a grant from the U.S. Administration on Developmental Disabilities, involves eight booklets. One is called "Patients' Rights and Responsibilities," and gives an overview of how patients should work with medical professionals to design their treatment. The other seven booklets each discuss a class of medicines, such as stimulants, antidepressants and antianxiety drugs.
The booklets discuss the reasons the medicines are given, the most common medicines in each group, frequently experienced side effects, interactions with other drugs and foods, and a discussion of how long such medicines are usually given.
"These booklets are different from most drug information given to consumers because they are written in simple words, with lots of illustrations," Benson said. "We explain difficult terms and give pronunciations for irregular or lengthy words."
Much of the material in the booklets is based on a book co-edited by Aman called "Psychotropic medications and developmental disabilities: The international consensus handbook." The book came from presentations made by experts at an international conference held at Ohio State in 1998, and updated by five consensus committees after the conference.
Translating the work of these experts into practical information that consumers could use presented a major challenge, Aman said. The booklets had to pass the review of both consumer focus groups and a professional advisory panel to insure that the information was accurate.
"We had to balance the desire for simplicity with the need to be factual," Campbell said. "It is extraordinarily difficult to meet the needs of everyone involved."
But early indications suggest the Project MED booklets have been successful. So far, several hundred users of the booklets have returned questionnaires asking about their reactions. About 78 percent of those who returned surveys had some type of developmental disability. About three-quarters said the booklets were easy to understand and only 8 percent said they were not easy. About 70 percent said the booklet they read was helpful.
Booklets have been sent around the country, as well as Canada, Aman said. Most of the booklets have been distributed by county boards and other agencies that serve people with developmental disabilities. However, anyone can order the booklets directly from the Project MED website at http://www.projectmed.org. Each booklet costs $1.50. The Project MED booklets are also available on audio tapes for people who have trouble seeing or who cannot read.
Contact: Michael Aman, (614) 688-4196; Aman.1@osu.edu Betsey Benson, (614) 688-3214; Benson.3@osu.edu Kenneth Campbell, (614) 688-3155; Campbell.208@osu.edu
Written by Jeff Grabmeier, (614) 292-8457; Grabmeier.1@osu.edu
EDITOR'S NOTE: Reporters who want sample copies of the booklets should contact Heidi Griswold-Rhymer at (614) 688-8214 or prog.med@osu.edu