Animated, Self-serve, Web-based Research tool (ANSWER): A decision aid for people with early rheumatoid arthritis.
Linda Li PT, PhD
Associate Professor and Harold Robinson/Arthritis Society Chair in Arthritic Diseases,
University of British Columbia (UBC) Department of Physical Therapy,
Senior Research Scientist, Arthritis Research Centre of Canada
Why do this 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.
What was found?
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.
How was the study conducted?
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.
Our consumer collaborators include: Mr. Otto Kamensek (ARC Consumer Advisory Board), Ms. Cheryl Koehn (Joint Health), and Ms. Colleen Maloney (Canadian Arthritis Patient Alliance). During the stages of development of the ANSWER, focus groups were held with the collaborators and other people with arthritis to ensure that the tool is comprehensive and user-friendly.
This project was funded by a two-year grant from the Canadian Institutes of Health Research (CIHR) through the Knowledge-to-Action competition.
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.
Paul Adam (Decision-Maker Co-Principal Applicant) is Rheumatology Liaison & Outreach Services Coordinator and a social worker at the Mary Pack Arthritis Centre. His research interests include patient-physician communication and patient behaviour change. Both Dr. Li and Mr. Adam form the core management team that will oversee the day-today management of the project and lead the KT activities.
Gwen Ellert is a nurse and has a Masters in Education. She is also a Health Education Consultant at Trelle Entreprises Inc. She is a co-author of two multidiscipline health education books. She provided expert consultation on the content of the ANSWER tool.
Anne Townsend is a medical sociologist and post-doctoral fellow at UBC. Her research centers on moral and ethical dimensions of patient experiences of chronic illnesses including: medication use, patient-practitioner relationships, consulting behaviour, and self-management.
Susan Cox is a medical sociologist and applied ethicist at UBC. Her research focuses on two areas: research ethics and social, ethical, clinical and health policy implications of risk and genetic testing for conditions such as arthritis.
Catherine Backman is a health services researcher. Her work focuses on measuring occupational performance/ participation in life roles, and intervention studies in rehabilitation.
Diane Lacaille is a clinical epidemiologist at UBC and a rheumatologist. As a recipient of The Arthritis Society Investigator Award, Dianne's research focuses on evaluating quality of arthritis care. She provides the clinician's perspective on RA treatment use and will assist in recruiting rheumatologists for the ANSWER prototype testing
Peter Tugwell is Tier II Research Chair in Health Equity, University of Ottawa, and Coordinating Editor of Cochrane Musculoskeletal Group.
Jessie McGowan is an information scientist and has extensive experience with Cochrane systematic reviews. Both Dr. Tugwell and Ms. McGowan are experts in the concept of effective consumer and will ensure that the ANSWER accurately reflects the effective consumer attributes.
Dawn Stacey is a health services researcher from the School of Nursing, University of Ottawa, and an expert in the shared decision-making concept. Dawn is a member of the International Patient Decision Aid Standards Collaboration, and has participated in the development of a number of decision aids on arthritis treatments.
Kendall Ho is a knowledge translation expert and an associate professor in the UBC Department of Surgery. His academic work centers on the use of information technology for KT by health care providers. Dr. Ho is the executive director of a MSFHR-funded Research Unit, entitled Technology-Enabled Knowledge Translation Investigative Centre (TEKTIC). He also has extensive connection with the BC Chinese community. One of his KT activities is the ICON project (Information for Chinese Online Network), which disseminates high quality, evidence-based health information to the Chinese speaking population. In addition to providing input for the ASNWER development and evaluation, he will also facilitate the future adaptation of the product into Chinese language.
Gerri Sinclair is the Executive Director of the Masters of Digital Media Program and CEO of the Centre for Digital Media (CDM). Her cross-domain career includes more than 20 years' experience in the fields of internet and new media technology, entrepreneurial business, academic research, and government policy. Dr. Sinclair will supervise a team of students at the Master of Digital Media program to develop the ANSWER. The student group will consist of individuals with skills in narrative script development, animation, graphic design, and multi-media project management. The collaboration with CDM will also allow us to access their facility and technical support for the evaluation of the tool.
Conrad Chan is a Master student at CDM who has completed his BSc with a major in Chemistry from the University of British Columbia. With his background in science and his specialty in digital art, Mr. Chan has the relevant interest and experience to work on this project. Conrad is currently an intern at the Arthritis Research Center where he is working on the preproduction and development of the ANSWER tool, and he will lead the student group at CDM in the fall.