Adherence to Refills and Medications Scale
Improving Adherence Through Health Literacy
Going to the doctor’s office might seem like a walk in the park for many, but nearly 25% of Americans have trouble understanding and acting on health information. Health literacy is critical to patients’ ability to navigate the healthcare system, share their medical information and history with medical providers, and manage the treatment of chronic and acute illnesses, yet it is rarely discussed in mainstream conversations about improving access to health care.
Sunil Kripalanim, MD is looking to change that through the development of an Adherence to Refills and Medications Scale (ARMS) designed specifically for patients with low levels of health literacy. Kripalani, now a professor of medicine at Vanderbilt University Medical Center, formerly on faculty at Emory, first became interested in health literacy while he was in college, working for a physician practice in Chattanooga during the summer. The clinic, concerned that the healthcare materials they were receiving from their professional society were too complex for their patients to fully comprehend, asked Kripalani to develop simpler patient materials.
“Through that work for a period of three months, I got introduced to the concept of literacy in healthcare and I just really appreciated the importance of it,” said Kripalani. “Patients’ challenges in navigating the health system are widespread, but at that time it was relatively unrecognized just how great these difficulties were and what effects they had.”
Aware of the importance of further research on health literacy, Kripalani pursued a residency at Emory, where he spent about half his time at Grady Memorial Hospital, where there was active academic work being conducted on health literacy. “When I decided to pursue a research career, health literacy was a natural area to be my focus.”
While taking a class on scale development, Kripalani decided to create a scale measuring medication adherence in patients with low literacy levels, born out of a need for more accurate measures of adherence. “In spite of knowing that only half of patients take their medications as prescribed, and knowing that medication non-adherence has a lot of consequences for patients’ health and health care utilization... we still don’t have robust systems for measuring and addressing medication non-adherence in healthcare systems.” According to co-developer, Terry Jacobson, MD of professor in medicine at Emory University, most practitioners do not appreciate the pervasiveness of low literacy in the population or the magnitude and impact of medication nonadherence on health outcomes.
Kripalani developed a set of items using simple language and short, straightforward questions to measure patients’ adherence to their prescribed medications. After reviewing with colleagues, speaking with patients, and eliminating redundant items, they tested the initial instrument in a broad group of patients. Then, psychometric analyses were utilized to determine which set of questions performed best and should go into the measure. The responses from the measure were validated through a comparison with other instruments used to measure adherence. Finally, they deliberately tested the questionnaire with different patient literacy level groups separately to ensure the accuracy of the scale across all levels of literacy.
Today, the Adherence to Refills and Medications Scale, known also as the ARMS, consists of 12 questions administered either verbally by healthcare professionals or via written questionnaire. Verbal use of the scale is preferred to address low levels of health literacy and other barriers to comprehension. “Usually when questionnaires are given on paper, or through the internet, or through a mobile device, we’re not necessarily thinking about people’s reading ability, or their eyesight, or ability to scroll around the page. Even though the use of digital technology is growing across age groups and across socioeconomic groups, there are still a lot of individuals who don’t navigate information as well as others,” said Kripalani.
“Many people aren’t aware of the prevalence of medication non-adherence, and how damaging it is to patient outcomes,” noted John Nicosia, the licensing associate at Emory OTT managing this case. “The ARMS provides an elegant tool to study this problem, especially in vulnerable communities that are often overlooked by the medical establishment.”
Today, ARMS has been translated into at least 19 different languages and is used across the globe--which has led to its own set of challenges. “As it’s being adopted around the world, there may be differences in healthcare settings that make some of the items less relevant. For example, I’ve been contacted by researchers from countries in Europe and Asia who say ‘well in our health system people don’t pay for their medications and so asking about medication costs isn’t relevant.’ Or if they only get their medicines in a doctor’s office versus a pharmacy, there’s no concept of medication refills. In that setting, we’ve actually had to adapt the measure to the cultural context more so than just adapting it to the language through translation.”
Still, Kripalani and Jacobson are gratified by the global interest in the ARMS scale and its use by researchers as well as practitioners working in community health clinics and hospital settings who can now actually tailor their patients’ care through the results of the questionnaire.
“One of the things that excited me was developing something specifically for patients with limited literacy skills,” said Kripalani. “My ultimate goal is that ARMS will continue to be widely used in research and practice as a measure of adherence, and I would be thrilled if it is viewed as one of the primary tools that people go to when they’re looking to assess adherence, especially across diverse populations.”
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