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Health Care Crisis:
CHICAGO, IL -- A new health literacy study, which specifically measured the ability of patients to read and understand medical instructions and health care information, concluded that 33% of patients did not understand instructions for common procedures written at the 4th grade level. The study used a test called TOFHLA (Test of Functional Health Literacy in Adults) and was reported in the December Journal of the American Medical Association (JAMA).
This health literacy study measured the ability of patients to perform such tasks as reading labels on prescription bottles, instructions about how often to take medication, notices about when is the next doctor's appointment, informed consent forms, instructions about diagnostic tests, and how to complete insurance forms. The researchers concluded that a high percentage of patients simply can't read well enough to function in our health care system.
This was the first study ever made to test literacy using words combined with numbers that are in common use in health care. It was a cross-sectional research project conducted at two urban hospitals, one in Georgia, the other in California.
People with inadequate literacy skills are unable to read a thermometer, write down instructions by telephone, or read common medical terms such as "orally," "teaspoon," and "hours." They can't access useful messages from newspaper and magazine articles, educational materials, posters in supermarkets, or billboards about the importance of screening procedures or flu shots.
Health care standards require hospitals to provide patients with understandable health instructions, but do not require that the instructions be understood. Hospitals assume they are complying if they give patients a readable document, but that assumes that the patients can read.
Patients who can't read informed consent forms present doctors and hospitals with what the researchers call "a troubling ethical issue." Even if an effort is made to simplify the forms to the 6th grade level, that still will not reach the many who are functionally illiterate.
According to the JAMA article, this health literacy project turned up other new and useful information not hitherto unearthed by previous literacy surveys made by educational institutions.
Neither appearance nor years of schooling adequately predicts illiteracy. This means that illiteracy is not just a problem for minority dropouts or recent immigrants, but is a handicap suffered by all races and classes of people even when they have no visible signs of disability and have spent many years in school.
Many illiterates do not realize that they have a problem. They are like myopic children who don't know that they are simply not seeing details that others see. The predicament of illiterates is similar. Never having been able to communicate with the printed word, they have no comprehension of the vast world from which they are excluded.
Even more prevalent, according to the JAMA report, is the pervasive problem of shame. People with limited literacy skills try to hide their inability to read. The large majority of illiterates describe themselves as reading and writing "well" or "very well."
The health literacy study showed that, among patients with low literacy skills, 67.2% have never told their spouse, 53.4% have never told their own children, and 19% have never told anyone at all.
Patients' noncompliance with their medical instructions has been generally assumed by physicians and hospitals to be caused by poor motivation or different personal values. The researchers call for a reevaluation of patients who have been labelled "uncooperative"; the study showed it is more likely that doctors and hospital personnel, to whom reading is as natural as breathing, never imagined that the patients just couldn't read their instructions.
The JAMA article presents the challenge that, although our health care system requires that patients be able to read, illiteracy is not a disease and its solution cannot be medicalized. Someone other than doctors and hospitals will have to provide the solution.