A randomized controlled trial of an intervention to reduce low literacy barriers in inflammatory arthritis management
Introduction
The U.S. Department of Education surveyed the literacy skills of adults in 1992 and 2003. Both surveys indicate that about half of U.S. adults have difficulty using print materials found in everyday life to accomplish mundane tasks, such as determining correct dosage by using a chart on the package of an over-the counter medicine [1], [2]. An analysis based on the 1992 National Adult Literacy Survey (NALS) indicated that a clear majority of adults had difficulty using health materials to accomplish health related tasks [3]. Unfortunately, the 2003 National Assessment of Adult Literacy (NAAL) indicated little or no improvement [4].
Health materials are complex and currently well over 800 peer-reviewed studies indicate a mismatch between the reading demands of these materials and the literacy skills of U.S. adults [5]. This mismatch between demands and skills has serious implications [6]. Poor literacy skills have been associated with unfavorable health outcomes for a number of chronic diseases such as diabetes, asthma, HIV, and heart disease [7]. Arthritis studies have contributed to this body of literature indicating, for example, that patients with rheumatoid arthritis who had not completed high school showed poorer clinical status than patients who had and that low formal education was a predictor of premature mortality for arthritis patients over a ten-year period [8], [9]. Patients with inflammatory arthritis need to be attentive to symptoms and subtle changes, engage in discussions with clinicians, differentiate among medicines, and follow recommended regimens. These activities require sophisticated literacy skills including reading, numeracy, oral presentation, and oral comprehension.
Despite the rich literature describing the burden and consequences of limited health literacy, few studies of interventions to reduce literacy related barriers to optimal care have been conducted. The Institute of Medicine Committee on Health Literacy strongly recommends that health care systems develop and support demonstration programs to establish the most effective approaches to reducing the negative effects of limited health literacy [10].
We report on a randomized controlled trial of an educational intervention, conducted among patients with inflammatory arthritis, to reduce the literacy demand and thereby enhance health outcomes. In the design of this study, health literacy was defined as the match between the literacy skills of individuals and the expectations and demands of health systems. This definition was later reflected in the reports of the Institute of Medicine [10] and the Department of Health and Human Services [11]. We hypothesized that patients randomly assigned to an intervention designed to reduce literacy related barriers would be more adept at following treatments, have greater self-efficacy, and increased satisfaction with care than would patients managed in a customary manner.
Section snippets
Methods
We conducted a randomized controlled single blind trial of an educational intervention. From 2003 to 2006, patients with rheumatoid arthritis, psoriatic arthritis and inflammatory polyarthritis (ICD-9 codes = 714.0, 696.0, 714.9) were recruited from an arthritis center in an urban teaching hospital. All participants had at least one visit with a rheumatologist who gave permission to recruit his/her patients and who also agreed to have study visits tape recorded if the patient consented to the
Recruitment
Detailed recruitment protocol and analysis of this multi-stage recruitment effort are published elsewhere [21]. As is illustrated in Fig. 1, of 1145 patients sent a recruitment letter, 679 were reached by phone for the initial screening. Of those contacted by phone, about a third (N = 271) were ineligible, the modal reason being too high a level of education, and another third (N = 193) refused to participate, many of whom stated they were not interested or didn’t give a reason. We found no
Discussion and conclusion
No differences between intervention groups were observed in the primary outcomes, including adherence to treatment and appointment keeping. However, the Individualized Care group did demonstrate greater improvement in mental health.
Conflict of interest
All authors declare that they have no actual or potential conflict of interest including any financial, personal or other relationship with other people or organizations within three years of beginning the work submitted that could inappropriately influence (bias).
Acknowledgements
We honor the memory of Dr. Lawren Daltroy who designed this study but did not live to see its completion. We are grateful to Simha Ravven, Marsha Lynch and Kaleena Scamman for their recruitment efforts, interview and data entry skills, and assistance with materials design. Role of funding: This work was supported in part by grants: NIH P60 AR 47782; NIH K24 AR 02123. The funding source had no involvement in data collection, analysis, or the preparation of this manuscript.
References (22)
- et al.
Compliance in rheumatoid arthritis and the role of formal patient education
Semin Arthritis Rheum
(1997) - et al.
Predictors of refusal during a multi-step recruitment process for a randomized controlled trial of arthritis education
Pat Educ Couns
(2008) - et al.
Adult literacy in America
(1993) - et al.
A first look at the literacy of America's adults in the 21st century (NCES 2006-470)
(2005) Health literacy skills of U.S. adults
J Health Behav
(2007)- et al.
The health literacy of America's adults: results from the 2003 national assessment of adult literacy (NCES 2006483)
(2006) - et al.
Health literacy: an update of public health and medical literature
“What did the doctor say?” Improving health literacy to protect patient safety
(2007)- Berkman N, DeWalt D, Pignone M, Sheridan S, Lohr K, Lux L, Sutton SF, Swinson T, Bonito AJ. Literacy and Health...
- et al.
Health literacy and arthritis research and practice
Curr Opin Rheumatol
(2007)