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      Readability of state-sponsored advance directive forms in the United States: a cross sectional study

      1 , 1 , , 2

      BMC Medical Ethics

      BioMed Central

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          State governments provide preprinted advance directive forms to the general public. However, many adults in the United States (US) lack the skills necessary to read and comprehend health care-related materials. In this study, we sought to determine the readability of state government-sponsored advance directive forms.


          A cross sectional study design was used. The readability of advance directive forms available online from all 50 US states and the District of Columbia was determined using 6 validated readability scales.


          Overall, 62 advance directive forms were obtained. For 47 states, forms were available by way of government-sponsored Web sites. The average (SD) readability (with the Flesch-Kincaid score) of all forms was grade level 11.9 (2.6). Similar results were obtained with the other readability scales. No form had a readability score at the 5th grade level or lower, the level recommended by the National Work Group on Literacy and Health. The readability of the forms exceeded this level by an average of 6.9 grade levels (95% confidence interval, 6.3-7.6; P < .001). Only 5 of the forms had a readability score at 8th grade level or lower, the average reading skill level of US adults. The readability of the forms exceeded this level by an average of 3.9 grade levels (95% confidence interval, 3.3-4.6; P < .001).


          The readability of US state government-sponsored advance directive forms exceeds the readability level recommended by the National Work Group on Literacy and Health and the average reading skill level of most US adults. Such forms may inhibit advance care planning and therefore patient autonomy.

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          Most cited references 12

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          Readability standards for informed-consent forms as compared with actual readability.

          Institutional review boards (IRBs) are charged with safeguarding potential research subjects with limited literacy but may have an inadvertent role in promulgating unreadable consent forms. We hypothesized that text provided by IRBs in informed-consent forms falls short of the IRBs' own readability standards and that readability is influenced by the level of research activity, local literacy rates, and federal oversight. To test these hypotheses, we conducted a cross-sectional study linking data from several public-use sources. A total of 114 Web sites of U.S. medical schools were surveyed for IRB readability standards and informed-consent-form templates. Actual readability was measured with the Flesch-Kincaid scale, which assigns a score on the basis of the minimal grade level required to read and understand English text (range, 0 to 12). Data on the level of research activity, local literacy rates, and federal oversight were obtained from organizational Web sites. The average readability score for text provided by IRBs was 10.6 (95 percent confidence interval, 10.3 to 10.8) on the Flesch-Kincaid scale. Specific readability standards, found on 61 Web sites (54 percent), ranged from a 5th-grade reading level to a 10th-grade reading level. The mean Flesch-Kincaid scores for the readability of sample text provided by IRBs exceeded the stated standard by 2.8 grade levels (95 percent confidence interval, 2.4 to 3.2; P<0.001). Readability was not associated with either the level of research funding (P=0.89) or local rates of literacy (P=0.92). However, the 52 schools that had been made subject to oversight by the Office for Human Research Protections (46 percent) had lower Flesch-Kincaid scores than the other schools (10.2 vs. 10.9, P=0.005). IRBs commonly provide text for informed-consent forms that falls short of their own readability standards. Federal oversight is associated with better readability. Copyright 2003 Massachusetts Medical Society
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            Health literacy: report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association.

            Patients with the greatest health care needs may have the least ability to read and comprehend information needed to function successfully as patients. To examine the scope and consequences of poor health literacy in the United States, characterize its implications for patients and physicians, and identify policy and research issues. The 12 members of the Ad Hoc Committee on Health Literacy, American Medical Association Council on Scientific Affairs, were selected by a key informant process as experts in the field of health literacy from a variety of backgrounds in clinical medicine, medical and health services research, medical education, psychology, adult literacy, nursing, and health education. Literature review using the MEDLINE database for January 1966 through October 1, 1996, searching Medical Subject Heading (MeSH) reading combined with text words health or literacy in the title, abstract, or MeSH. A subsequent search using reading as a search term identified articles published between 1993 and August 1998. Authors of relevant published abstracts were asked to provide manuscripts. Experts in health services research, health education, and medical law identified proprietary and other unpublished references. Consensus among committee members was reached through review of 216 published articles and additional unpublished manuscripts and telephone and Internet conferencing. All committee members approved the final report. Patients with inadequate health literacy have a complex array of communications difficulties, which may interact to influence health outcome. These patients report worse health status and have less understanding about their medical conditions and treatment. Preliminary studies indicate inadequate health literacy may increase the risk of hospitalization. Professional and public awareness of the health literacy issue must be increased, beginning with education of medical students and physicians and improved patient-physician communication skills. Future research should focus on optimal methods of screening patients to identify those with poor health literacy, effective health education techniques, outcomes and costs associated with poor health literacy, and the causal pathway of how poor health literacy influences health.
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              How health care systems can begin to address the challenge of limited literacy.


                Author and article information

                BMC Med Ethics
                BMC Medical Ethics
                BioMed Central
                25 April 2010
                : 11
                : 6
                [1 ]Department of Dental Specialties, Mayo Clinic, Rochester, Minnesota, USA
                [2 ]Division of General Internal Medicine, Mayo Clinic, 200 First Street SW, Rochester, Minnesota, USA 55905
                Copyright ©2010 Mueller et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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