For the past 20 years, I have immersed myself in the research field involving young people with arthritis and their families. I am also a patient myself, living with asthma since I was born. When I decided to write this blog post, I wondered what would be most interesting and valuable for young people with arthritis and their families. I came up with one thing that I find the most important both as a patient and a researcher trained in occupational therapy and epidemiology -- shared decision making.
There are a few different definitions in terms of shared decision making, but here is how I think of it in pediatric rheumatology. To me, it means that young people and their families make decisions alongside their health care providers. To make the best treatment decisions possible, they need evidence-based information on the benefits, risks and other important practical aspects of available treatment options. This means that the information comes from high quality and up-to-date scientific studies. Young people also need to understand which types of treatments they prefer and what they value the most when choosing treatments, and to talk about this with their health care providers. This will help young people make informed decisions that match their personal preferences.
As a patient, I wanted to get more information about treatments that I could take for my asthma. In addition, I wanted everyday tips to help control my symptoms and help ensure that I would be healthy for years to come. I wanted treatments that were effective in controlling my symptoms, without too many side effects. I have always had trouble managing my condition, but I realized that this was due to my lack of knowledge about treatment options. From then on, I slowly came to discover what I valued in terms of treatments. Since my health care providers didn’t always share my beliefs, I often had to advocate for my treatment preferences; it hasn’t been easy. As a patient, I often feel powerless. However, I know that I have expertise that cannot be denied. I know myself better than anybody else.
In my research with young people with arthritis and their parents, I often heard the same concerns. In our research, parents and young people told us that they wished to have more information on various ways to manage their arthritis and its symptoms (1). They wanted to know more about physical activity, diets, manual treatments such as massage, and self-management and mind-body approaches. They also wished to avoid side effects of drugs and the impact that arthritis can have on young people in the short and long term. Families also mentioned that they don’t always have a discussion with their health care providers about these treatments and they don’t always feel they can discuss their treatment preferences. There just isn’t much time to spend on discussing all these treatments for symptoms like pain and fatigue, as well as feeling down or anxious. Many health care providers also agreed, and aimed to do better.
We can facilitate shared decision making in many ways, including developing patient decision aids, decision coaching, and training of health care providers. Patient decision aids are tools that provide information on treatment options, help people clarify their preferences, and help people make decisions that are informed and consistent with their preferences. They can be used along with decision coaching from a health care provider to further help people make decisions that match their preferences. Evidence shows that these interventions can improve patient knowledge, the match between the chosen treatments and patient values, and can help the undecided make decisions (2,3). Here is a website with information and examples of these tools: https://decisionaid.ohri.ca/.
Our work to date engaged patients, health care providers and researchers to develop an interactive web-based patient decision aid for pain management for young people with juvenile arthritis and their families, called the JIA Option Map (4). We then improved the app to make sure it was easy for young people and their families to understand and to use. In the future, we will combine it with decision coaching and training for health care providers, and will evaluate how it can improve decision making and health outcomes. We are also working with a team to expand the app to other symptoms experienced by young people with arthritis, such as fatigue, and feeling down and anxious.
As some have mentioned, there are many myths around applying shared decision making in practice (5). People will say they already use shared decision making, that it is not feasible, or that families don’t want it. That is simply the easy way out. We need to overcome these barriers to engage young people directly in decision making and in managing their condition, and thus truly empower them to manage their health optimally.
Please refer to our website and Youtube channel for more information on our work:
References:
(1) Toupin-April K. Stinson J, Huber AM, Duffy, CM, Gaboury I, Morgan EM, et al. Exploring Decision Making Needs about Pain Management Among Adolescents with Juvenile Idiopathic Arthritis and Their Families: Preliminary Results from Interviews. Arthritis Rheumatol. 2018; 70 (suppl 10).
(2) Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2017;1:CD001431.
(3) Stacey D, Kryworuchko J, Bennett C, Murray MA, Mullan S, Légaré F. Decision coaching to prepare patients for making health decisions: a systematic review of decision coaching in trials of patient decision AIDS. Medical Decision Making. 2012;32:E22-33.
(4) Toupin-April K, Huber AM, Duffy CM, Proulx L, Morgan EM, Cohen JS, et al. Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map. Patient - Patient-Centered Outcomes Res. 2020;13(6):719–28.
(5) Légaré F, Thompson-Leduc P. Twelve myths about shared decision making. Patient education and counseling 2014 Sep 30;96:281-6.
Comments