Adaptation of the health literacy universal precautions toolkit for rheumatology and cardiology – Applications for pharmacy professionals to improve self-management and outcomes in patients with chronic disease

Abstract

Over a decade of research in health literacy has provided evidence of strong links between literacy skills of patients and health outcomes. At the same time, numerous studies have yielded insight into efficacious action that health providers can take to mitigate the negative effects of limited literacy. This small study focuses on the adaptation, review and use of two new health literacy toolkits for health professionals who work with patients with two of the most prevalent chronic conditions, arthritis and cardiovascular disease. Pharmacists have a key role in communicating with patients and caregivers about various aspects of disease self-management, which frequently includes appropriate use of medications. Participating pharmacists and staff offered suggestions that helped shape revisions and reported positive experiences with brown bag events, suggestions for approaches with patients managing chronic diseases, and with concrete examples related to several medicines [such as Warfarin^©] as well as to common problems [such as inability to afford needed medicine]. Although not yet tested in community pharmacy sites, these publically available toolkits can inform professionals and staff and offer insights for communication improvement.

Introduction

Research has demonstrated links between health literacy skills of patients and health outcomes.1, 2 Consequently, health literacy is increasingly considered in health policy development. The National Action Plan to Improve Health Literacy (NAPHL) articulates seven goals and priorities for a wide swath of stakeholders (including organizations, professionals, policy makers, and communities) in order to create a more health-literate environment.³ The plan is based on two principles: that everyone has the right to health information and that health services should be delivered in ways that are understandable and beneficial. This emphasis on accurate and actionable health information is a result of findings from over a decade of health literacy studies. Research indicates a profound mismatch between the structure and content of health information (delivered in writing or in talk) and the average skills of high school graduates.4, 5, 6, 7 Indeed, as adult literacy surveys and health literacy studies indicate, a majority of US adults have difficulty using everyday materials with accuracy and consistency as they try to accomplish mundane tasks.8, 9, 10 Unfortunately, it is not always clear who is struggling to understand and use health information.11, 12 As a result, a clear action plan for health improvement is a call for literacy-related universal precautions: treating everyone as though they have difficulty accessing and understanding health information.¹³

The mismatch between average literacy skills of US adults and complex health information is of particular concern for all health professionals who work with patients with chronic health conditions, such as arthritis, asthma, diabetes, and cardiovascular disease.10, 14 A recent project studying the domains of communication between patients with heart disease and their physicians showed that physicians were unaware of medication adherence barriers in 38 out of 57 visits (65%) and of psychosocial barriers in 61 out of 88 visits (69%).¹⁵ Low health literacy is related to mortality and hospitalization among patients with heart failure, and its affects may be mutable by practicing appropriate interventions including “appropriate teaching methods, reinforcement of education over time and checking for understanding.”¹⁶ Furthermore, limited health literacy has been found among patients in many rheumatology clinics and proved to be predictive of disease severity.¹⁷

A number of efforts are underway to mitigate the effects of low health literacy on patient health outcomes. Some programs aim to enhance patient education materials to make them more understandable,18, 19 using well designed, easy-to-read materials focused on treatment, medications, and general information about particular diseases. In one case, a program included a patient educator to review information with patients. These efforts have been shown to improve clinical outcomes and disease-specific knowledge for patients.²⁰ Other initiatives have focused on the role of the practitioner in overcoming barriers associated with low health literacy through the development of manuals and protocols to improve clinical interactions and practice re-design. The tools for training health care workers differ from program to program, with some offering educational manuals for clinicians, others providing instructional toolkits for teams to implement in clinics, and still others offering one-time in-person training seminars.²¹

There are several substantial specific efforts to address the concerns of low health literacy that are targeted to pharmacy professionals in both the academic and community settings. The Accreditation Council for Pharmacy Education (ACPE) recognizes communication as an essential professional responsibility of pharmacists by requiring that all schools of pharmacy adequately prepare and document competency in communication with patients for pharmacy graduates.²² Furthermore, the Agency for Healthcare Research and Quality (AHRQ) acknowledges that pharmacists play a key role in “making sure that patients obtain the maximum positive health outcomes from their medications,” and offers the Pharmacy Health Literacy Center. This online site offers free tools, curriculum modules and resources to promote health literacy for pharmacists in the academic and community setting.²³ One such resource available to address health literacy universal precautions in a comprehensive way is the health literacy universal precautions toolkit for primary care practices that was commissioned by AHRQ (HLUPTK-PC) and released in 2010.24, 25 The toolkit provides a structured approach for all clinic practitioners and staff, including pharmacy professionals, to improve care for all patients regardless of their literacy level. The toolkit includes 20 tools with practical guidance for conducting a health literacy assessment of the practice, improving written and verbal communication as well as improving self-management and supportive services.

This small study is focused on the adaptation, testing, and refinement of two new subspecialty health literacy toolkits and their application for related medical specialists and in pharmacy practice. These toolkits, focused on issues related to rheumatology (HLUPT-R) and cardiology (HLUPT-C) practices, were adapted from the health literacy universal precautions toolkit for primary care practices (HLUPT-PC).24, 25 Heart disease and arthritis are two of the most prevalent chronic conditions and often require patients to adhere to complicated medication regimens.²⁶ Our toolkit adaptation team included health educators, a dietitian, pharmacist, internist, rheumatologist, cardiologist, and social scientists. The HLUPT-PC was reviewed to identify possible opportunities for specialty customization. An environmental scan of health literacy literature for rheumatology and cardiology was conducted. Experts associated with rheumatology and cardiology practices and individuals at the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and voluntary health agencies such as the Arthritis Foundation and American Heart Association were contacted for their advice and input. Gaps in rheumatology and cardiology specific materials were identified and relevant resources, materials, references, and examples were selected.

Based on the results of the scans and input from experts, two new toolkits were drafted for testing. HLUPT-R additions included references to health literacy in rheumatology, a video using the teach-back method in a patient with rheumatoid arthritis, a rheumatology specific plain language guide, medication aids and handouts for rheumatic disease therapies, and links and examples of easy to understand arthritis and rheumatic disease patient education materials. HLUPT-C additions included cardiology-specific health literacy studies, a teach-back video with hypertension and heart failure examples, medication aids for cardiac disease therapies, and links to cardiology patient education materials that are appropriate for patients with all levels of health literacy. An additional tool was added to each subspecialty toolkit, “communicating care with other physicians,” which provides guidance for a subspecialty provider to communicate with the patient's primary care physician.

Pharmacists have a key role in communicating with patients and caregivers about various aspects of disease self-management, which frequently includes the appropriate use of medications. Health literacy studies indicate that, regardless of literacy levels, patients have particular difficulty with medication dosing when more than five medications are taken.²⁷ Patients with chronic disease and especially those with multiple chronic conditions, such as those followed in rheumatology and cardiology practices, frequently take five or more medications, and a recent study identified that patients with low health literacy and coronary heart disease were less likely to identify all of their medications.²⁸ Therefore, the subspecialty toolkits were examined for applications for pharmacists and other health care professionals.