Research Completed

Animated, Self-serve, Web-based Research tool (ANSWER): A decision aid for people with early rheumatoid arthritis.

Scientific Study Title:

Animated, Self-serve, Web-based Research tool (ANSWER): A decision aid for people with early rheumatoid arthritis.

Research Category

Arthritis Care, Treatments and Medications

Why do this research?

Reason For Research

For people with rheumatoid arthritis (RA), disease-modifying anti-rheumatic drugs (DMARDs) should be used within the first three months of symptoms in order to prevent permanent joint damage. However, recent studies show that there is a long delay in DMARD use in Canada. While studies exist that are designed to improve family physician’s ability to refer to a rheumatologist and prescribe treatments, there has been little done to improve the delivery of trustworthy and user-friendly information for people to make informed decisions about their treatment.

This project is based on our recent study, Early Rheumatoid Arthritis Help-Seeking Experience, which aimed to understand the process of patients seeking care after being diagnosed with RA. Our analysis found two common themes

Lack of useful information for symptom management while patients wait for a specialist appointment
Lack of credible, relevant, and user-friendly information for making decisions about treatments after the initial diagnosis

In this project, we have developed and tested an online tool called ANSWER. This tool helps people who are recently diagnosed with RA make informed, timely decisions about using Methotrexate, a disease-modifying anti-rheumatic drug used to treat RA.

We envision that ANSWER will accelerate the dissemination of necessary knowledge and skills for people who have been recently diagnosed with RA enabling them to make informed, timely decisions about the use of Methotrexate. The latest in animation and web-based tools will ensure ANSWER fills a knowledge translation gap, focusing on the next generation of people living with RA.

Methodology

Execution of Research

ANSWER was developed using the following steps:

Based on the best evidence on the use of DMARDs and other management options, and the factors found in ERAHSE to affect a patient’s decision to use a treatment, a storyline and scripts were created.
The ANSWER prototype was designed
Health professionals and patients conducted user function tests to evaluate the content and the program’s ease of use.
The ANSWER tool was refined and uploaded on The Arthritis Society website
A pilot study was conducted to measure the degree to which ANSWER improves users’ abilities to make informed decisions about taking Methotrexate, their knowledge about RA, and their ability to be effective healthcare consumers.

The evaluation of ANSWER was completed in 2 phases

Phase I: The user function test determined how comprehensive the content is and how usable the tool is for a person with RA. The feedback was used to refine the ANSWER prototype. We asked questions including:
- What do you like or dislike about the ANSWER?
- What do you think about the content and the presentation of ANSWER?
- What do you think about the story sequence and progression?
- What do you think about the user interface, including the use of keyboard and mouse?
Phase II: The pilot study measured the degree to which ANSWER improves users’ abilities to make an informed decision about taking Methotrexate, improves their knowledge about RA, and improves their ability to be effective healthcare consumers. Participants were asked to use the ANSWER tool at their own pace, and fill out a few questionnaires. At the end of the program, ANSWER produces a one-page summary which will include the participant’s health information, treatment options, and initial treatment decisions and concerns. The participant can discuss this summary with their rheumatologist or family physician and then make a decision about Methotrexate.

Findings & Next Steps

30 participants were recruited to test whether the tool helped their decision making. Led by Dr. Linda Li, researchers measured how perceptions of uncertainty and feelings of being unclear about personal values changed after using ANSWER. Results showed that levels of uncertainty declined, with the percentage of participants who were likely to follow through with their choice of treatment rising from 13.3% to 70% after using ANSWER.

Researchers also wanted to learn more about participants’ experiences of using the new online tool. Of the 11 participants interviewed in depth by researchers, several felt that ANSWER had helped them to reach a treatment decision driven by what was most important for them. Some participants also commented that they felt more comfortable in asking questions during doctors’ visits after using ANSWER. Interestingly, participants’ view of ANSWER and the information it offers was commonly influenced by their past histories of living with the disease and their prior knowledge. As participants’ prior knowledge on treatment was sometimes inaccurate, this highlights a need for future decision aids to tackle myths about RA.

Related Publications

Li, L; Adam, P; Townsend, A; Backman, C; and the ANSWER team. “ANSWER: an Animated Self-serve Web-based Research tool for Improving Shared Decision Making in Early Rheumatoid Arthritis”. 15th Annual Qualitative Health Research Conference, Coast Plaza Hotel and Suites. Vancouver, British Columbia. October 4-6, 2009.

Li LC, Adam PM, Townsend AF, Lacaille D, Yousefi C, Stacey D, Gromala D, Shaw CD, Tugwell P, Backman CL. Usability testing of ANSWER: a web-based methotrexate decision aid for patients with rheumatoid arthritis. BMC Medical Informatics and Decision Making. (DOI: 10.1186/1472-6947-13-131) 13:131, 2013.

Li LC, Adam PM, Backman CL, Lineker S, Jones CA, Lacaille D, Townsend AF, Yacyshyn E, Yousefi C, Tugwell P, Leese J, Stacey D. A proof-of-concept study of ANSWER, a web-based methotrexate decision aid for patients with rheumatoid arthritis. Arthritis Care & Research. DOI: 10.1002/acr.22319). (66(10):1472-1481, 2014. To access publication, click here.

Web Link

ANSWER Project Website