Lay Summary
Educating patients with chronic diseases about their condition and its treatment is a central component of a physician’s role. In order for patients to be able to follow doctors’ recommendations and instructions, it is essential that they remember and understand what they are told. However, patients often cannot remember much of the information that doctors provide. Further, studies show that only 12% of adults have proficient health literacy, while more than double that amount (36%) have basic or below basic health literacy. This stands in stark contrast to the half of US adults living with at least one major chronic health condition and one in four living with multiple chronic conditions according to the 2012 National Health Interview Survey.
Increasingly, people in the United States are accessing the Internet to obtain health related information (eHealth). However, many have difficulty finding, understanding, and remembering this information. Further, information often does not address the specific questions patients have. In addition, the content is often delivered in formats less likely to promote learning such as formal, complex, text. Finally, much of the content written for patient education is at a level that is higher than the average health literacy. Given the growth of eHealth and its potential shortcomings, there is a crucial gap in our understanding of how best to deliver health information to improve outcomes.
To address this gap, we are developing a novel, Internet based patient education tool called the Patient Activated Learning System (PALS). The long-term goal of PALS is to improve health outcomes through improved delivery of eHealth information. PALS uses best practices in adult education to improve patient education. The potential benefit of PALS is based on combining several core features: 1) information is delivered through audiovisual (as well as written) content in an engaging conversational style, 2) content is organized according to patient’s questions, 3) content is organized into concise, discrete segments that cover a learning objective, and 4) the writing is at a 6-7th grade reading level.
The goal of this grant is to test if the PALS approach to eHealth delivery improves patient learning over the current leading eHealth source, WebMD. We will test if patients who learn about hypertension medications with PALS have higher immediate and 1 week recall compared to patients who learn the same information via WebMD. We will also determine if patients rate the PALS system higher than WebMD on measures of user experience including usefulness, comprehensibility, adequacy of the information, as well as attractiveness of the site, level of engagement, and trustworthiness of the materials.
Project Protocol:
The Impact of the Patient Activated Learning System (PALS) on Knowledge Acquisition, Recall, and Decision Making about Antihypertensive Medication: A pilot Study
Aims:
1) Determine if 60 hypertensive patients who learn about hypertension medication with PALS (intervention) have higher immediate and 1 week knowledge assessment scores than 60 hypertensive patients randomized to learn the same information via WebMD (control).
2) Compare differences in patient’s responses to hypothetical questions about antihypertensive medicine-related decision making between those who viewed information via PALS and those who viewed information via WebMD.
3) Describe differences in patients’ user experience with PALS vs. WebMD. We will compare usefulness, comprehensibility, and adequacy of the information as well as attractiveness of the site, level of engagement, and trustworthiness of the materials between the two sites.
4) To determine which questions about antihypertensives patients consider most important and whether or not the 5 most highly rated questions are more likely to be addressed on PALS vs. WebMD.
Methods/Approach:
Patients with hypertension, who have been prescribed any antihypertensive medicine except chlorthalidone will be recruited from the Weill Cornell Internal Medicine Associates (WCIMA) practice. Eligible patients who agree to participate will be randomized to view information about the antihypertensive, chlorthalidone, via the PALS or WebMD. The study procedures will be identical for both the PALS and WebMD groups.
Chlorthalidone was chosen because, despite its efficacy, it is not prescribed as often as other antihypertensives. This will allow us to select a sample of patients who are less likely to have baseline knowledge of the information we are testing. In addition, it is one of the medicines for which we developed PALS content.
In order to assess knowledge acquisition and recall, patients will be shown up to 10 pre-specified webpages within their site of randomization that contain information that answers 10 discrete questions about chlorthalidone. We will measure knowledge acquisition by administering up to 10 corresponding assessment questions to be answered by the patient immediately after viewing the information. The knowledge score will be the percentage of correct responses to the 10 assessment questions. We will evaluate knowledge retention by asking the same 10 assessment questions over the phone one week later and measuring the percent correct. User experience, trust, and patient decision-making will be assessed through a patient survey and through a short semi structured patient interview administered immediately after viewing the educational material. We will also collect information on health literacy via the REALM-SF health literacy questionnaire as well as demographic information including age, level of education, race/ethnicity, prior Internet use, and access to the Internet through patient surveys.
In order to assess which questions patients prioritize and if these are available on PALS and WebMD, we will show patients a list of 20 questions about antihypertensive medicines and ask them to chose the 5 most important to them. We will then search for the answers to the 5 highest prioritized questions to determine whether or not they are available on each site.
Surveys and knowledge scores will be administered and collected using Qualtrics. Subjects will be compensated with a $25 ClinCard after completing the study visit.
Subject Identification/Recruitment:
We will identify eligible subjects through several mechanisms. A research assistant (RA) will review the electronic medical record (EMR) and appointment schedules to identify patients who have a diagnosis of hypertension and have any antihypertensive medicine other than chlorthalidone on their active medication list, and have an upcoming WCIMA appointment. Patients who, upon EMR review, are found to be non-English speaking, or have cognitive impairment or other medical condition that would preclude participation, will be excluded. This will be confirmed with the patient’s primary provider. The RA will then contact potentially eligible patients by phone prior to their scheduled WCIMA appointment to introduce the study. Those who agree will be scheduled for a study visit to coincide with their scheduled WCIMA visit. The RA will also approach potentially eligible patients that were not reachable by phone, in the waiting room at WCIMA. If subjects agree to participate in the study, the RA will arrange a time to participate that is convenient for the patient.
Inclusion Criteria:
• WCIMA patients with hypertension who have been prescribed any antihypertensive medicine except chlorthalidone.
Exclusion criteria:
• WCIMA patients without hypertension
• WCIMA patients with hypertension who have not been prescribed antihypertensive medicine
• Patients who are non-English speaking
• Patients with cognitive impairment or other medical condition that would preclude participation
Study Visit/Procedures:
1) Informed consent
2) Collection of demographic data: Data will be collected on demographic information that is not available in the EMR, including education level, race, ethnicity, and email address. We will also ask about prior Internet use for health information as well as their access to the Internet on their phone or at their home. We will also confirm contact information.
3) Randomization to PALS or WebMD: The RA will have numbered, sealed envelopes prepared by Dr. Jannat-Khah containing their randomly allocated treatment arm (PALS vs. WebMD).
4) Health Literacy Assessment: Patients will be given the REALM-SF health literacy questionnaire.
5) Knowledge assessment: Patients will be shown educational content about chlorthalidone on the site of randomization (PALS or WebMD) via a tablet or computer provided by the RA. A total of 10 items will be shown. Patients will answer assessment questions on each of the items they are shown.
6) User experience and decision making assessment: Patients will complete a survey and answer open-ended questions to provide feedback about the website they view. The survey will include Likert scale measures of usefulness, comprehensibility, and adequacy of the information for hypothetical medicine decision-making as well as attractiveness of the site, level of engagement, and trustworthiness of the materials.
7) Question priority assessment: Patients will be given a list of 20 potential questions about antihypertensive medicines and be asked to choose the 5 that are most important to them.
8) Recall assessment: Patients will be called at one week and asked the same assessment questions over the phone. Answers will be recorded.
Study Content Areas:
1) How does chlorthalidone work?
2) What are the side effects of chlorthalidone?
3) How much does chlorthalidone decrease the risk of heart disease and stroke?
4) What activities should I avoid while taking chlorthalidone?
5) Which over the counter medicines should I avoid while taking chlorthalidone?
