Beacon: Decision Aid for COPD Patients
Chronic Obstructive Pulmonary Disease (COPD), commonly known as emphysema, limits the ability of a person’s lungs to retain oxygen. People with COPD have severe issues with breathing. Many individuals describe their difficult experience as “breathing through a coffee straw”. This significantly decreases their quality of life. While there is no cure for COPD, there are two approaches to alleviate the condition: medical treatments (oxygen, bronchodilators, steroids, pulmonary rehabilitation) and a lung transplant. The process of choosing between these two options can be confusing.
In collaboration with University of Pittsburgh Medical Center (UPMC), we worked with Dr. Cynthis Gries to design a decision aid that helps patients choose a treatment that best fits their needs and values.
As the research lead of the team, I, with my team, interviewed stakeholders, doctors, social workers and caregivers, in the early stage. We also talked to pre- and post-transplant patients to understand their worries and concerns. In the design phase, I lead the team to conduct think-alouds and interviews to test our prototypes.
To better help the patients, we started off by reading existing literatures on COPD and its treatment. As there was no decision aid for COPD patients, we conducted a competitive analysis on existing decision aids for other diseases. This was followed by multiple visits to the UPMC hospital to observe COPD information sessions and consulting sessions. We collected a copy of information packet that the hospital handed out to patients. The packet contained all the information the patients needed to know, regarding to the disease, insurance, lung transplant surgery, and after-surgery care. Last but not least, we interviewed with stakeholders who were involved in patients’ decision making process. Those stakeholders were, but not limited to, caregivers, social workers, surgeons and pulmonologists. From the stakeholders, we wanted to understand what people need to and want to know the most to make an informed decision on treatment.
We gathered a large amount of information from literature review, observations and interviews. To consolidate these information and pull out critical findings, we went through 7 hours of affinity diagramming. From the diagram, 3 critical findings emerged:
Insight 1: patients think that risks and complications won’t happen to them,
Insight 2: patients trust doctors but also listen to other patients,
Insight 3: patients consider a lung transplant as their only treatment option.
These three insights were the main focus of our decision aid.
In this prototype, we aimed to test the overall layout and content structure. We focused on exploring navigation structures and ways to present information about the treatment options.
Guided vs Sidebar.
We explored two types of navigation. The guided navigation provided patients with all the information in a linear style. Patients would only use “Next” and “Previous” buttons to go through the decision aid. The benefit was that it is easy to use and patients would not miss any important information by skipping through sections.
The sidebar navigation, on the other hand, offered more flexibility to go from section to section. It also signaled the users which section of the decision aid they were on by referring to the menu on the left.
As COPD constraints patients’ oxygen intake, it also limits their attention span. Therefore, it is critical to present information in an engaging and dynamic manner. To achieve this, we tried multiple methods of providing information to the patients. Other than texts, we integrated videos and quiz questions that stressed major takeaway points that the patients should know about for each treatment option (medical treatment vs. lung transplant).
We also used a scale metaphor that was commonly used in decision aids to visually present pros and cons of two options. Prior to the scale metaphor page, patients had to answer questions about what they valued the most in their lives and what they wanted to get out from the treatment. Depending on what values each treatment could satisfy, we put the values that the patients chose on two sides of the scale, each side representing one treatment option. By visually seeing which side the scale tilts, patients can have a clearer idea of which treatment is better for them.
We built an interactive medium-fidelity prototype using a prototyping tool called Proto.io. During the medium-fidelity phrase, we focused on refining three key elements of the tool: the navigational structure, the interactive elements (i.e., quiz questions, videos, and the scale metaphor), and the content design.
Our high fidelity prototype was a static website, created with the expectation that some of the code might be used in the final product. In high-fidelity prototyping phase, we significantly improved the usability of our navigation, the organization of our content, and the videos in the decision aid. We also structured our decision tool around the 3 insights from our interviews and observations.
Insight 1: Risks and complications won’t happen to me.
To help patients correct their bias, we created visualizations and used plain English to help patients understand that risks CAN happen to them. We also used photos of real COPD patients to close the mental gap between “others” and “me”.
Insight 2: Trust in doctors but also other patients.
We used this insight to its fullest. We found videos of real patients talking about their experiences with each treatment and also made our own videos on potential risks. We sprinkled these videos throughout the decision tool to not only inform patients from other patients’ perspectives, but also to better engage the users.
Insight 3: A lung transplant is my only treatment option
We found in our interviews that it is a common misconception that lung transplant is a patient’s only option. For our client, it is critical to inform the patients that there IS another option, i.e., enhancing medical treatment. Therefore, in our design we put equal emphasis on these two treatments. We also intentionally introduced medical treatment first so that it grabs users’ attention before they dive into details on lung transplant.
Click here to see our final prototype in action.
Our client was very satisfied with the final work and decided to continue on working on the decision aid based on our design and eventually launching it in the near future.
For people with severe COPD, choosing the right treatment can greatly affect their life quality. How can they get clear and credible information on various available treatments and know what works the best for their individual cases?
To create a tool that educates patients about the risks and benefits of the treatment options for severe COPD and help them connect their values and individual circumstances with their treatment choice.
UX Research Lead