Problem
Lack of an All-Encompassing Duchenne Care Site

There is an unmet need for patient and family-centered educational tools to help visualize care trajectory, improve patient agency, and improve quality of life and future planning for patients and caregivers. Patients with Duchenne muscular dystrophy (DMD) deserve high quality patient and family-centered physical, psychological, emotional, and spiritual care to improve their lives at every stage of their illness.

Solution
Optimize Educational Resources

The deliverable will be an interactive, web-based journey map, which will educate patients and families about DMD and its treatment path from childhood through adulthood.

The main objective is to help connect families to resources and prepare discussions with clinicians. The central hypothesis is that the refined DMD journey map and website will be acceptable for use by DMD patients and caregivers, and feasible for DMD clinicians to integrate into clinic practices.

The Live Well Team

• Matt Anthony | Research Advisor

• Babaljit Kaur | Team Lead and UI/UX Fellow

• Alexis Begnoche | Research Fellow

• Keeton Yost | UI/UX Fellow

• Abbie Howell | Communication Design Co-Op

• Cindy Zhang | Communication Design Co-Op

My Responsibilities

• Meeting weekly with Cincinnati Children’s palliative care staff to present progress work and share ideas and aiding in secondary and primary research.

• Creating wireframe screen sketches and making iterations based on feedback from user-testing and interviews

• Contributing and designing the final screens of the Duchenne muscular dystrophy microsite

Benchmarking and Secondary Research

To get onboarded onto the project, we met with the Cincinnati Children’s (CCHMC) palliative care team who supplied us with literature review and medical information about DMD, such as cardiovascular, pulmonary, and orthopedic health. We then looked into how educational sites, specifically those for DMD, organize and display content. This helped us gain an understanding of how visuals, videos, tabs, and timelines should be portrayed. Great contrast between blocks of information and visuals with icons and diagrams were definitely favorable for easy understanding.

Wireframe Sketches

We then looked at swim lane timelines to get an idea on how to display the DMD milestones as part of the DMD tool. We also looked at other forms of data visualization as opposed to a linear approach. This helped give us inspiration during our crazy 8 sketching, and we made wireframe sketches of the DMD timeline in other forms like radial or flow maps. We launched a simple A/B testing survey of our digital timeline designs and found that the filter timeline is the most favorable design among 15 survey takers.

Card Sorting with Patients and Clinicians

From interviews with parents/patients and CCHMC palliative care clinicians, we engaged in a card sorting activity of common DMD topics to see how parents/patients would prioritize what is important based from their experiences with DMD and what they saw was missing.

Synthesis and Key Insights

We found that in addition to managing health events, such as keeping up with physical therapy and getting a wheelchair, life events are also important to consider, especially how they intersect. Many families and patients wish that topics like social life and independent living were focused and what that means for DMD patients when they hit certain milestones, like losing mobility. With that in mind, we categorized our card sorting findings into three main groups of treatment: medical, emotional, and lifestyle.

Information Architecture and More Wireframe Sketching

We then categorized pages and content that would exist under the DMD tool. There would be a home page with general information on DMD and then the categories of the physical, emotional, and social aspects of the treatment journey. The CCHMC palliative care staff felt that most resources are purely medical, and should include other information such as mental health and social aspects of the care journey. Afterwards, we sketched out more wireframe designs for the website, closing in on our favorite designs.

User Testing with Patients and Clinicians

We user tested with parents/patients and clinicians with various designs for DMD content. We discovered that most users really loved the diagrams accompanying the text, as well as filtered tabs. The icons and cards of information were also an important aspect to differentiating between blocks of information. It was important to keep information high-level, but not overwhelming with too much detail.

Refined Screens

A Figma prototype was created at the end of the Summer 2021 intern semester. Unfortunately due to confidentiality rules, I cannot publicly display the final screens here except in an interview setting! Below are some features we included in the DMD site. We focused on showing high-level content in a way that isn’t overwhelming, but instead helps inform families and start important conversations with clinicians and medical professionals.

Takeaways

• This project spans across multiple co-op semesters. In future semesters, the body copy is to be finalized, as well as additional landing pages.

• I think the most important part of this project is to help reduce the stigma around the term “palliative care.” We wanted to emphasize that palliative care meant having a care plan throughout the entire treatment journey, not “end of life”.

• As my second professional project, I got to learn more about user-centered design best practices and research methods. I got more comfortable with being in a client-facing environment and I got more confident leading user testing sessions, which helped shape the final designs for the prototype.

• I learned much more on user interface design, and I’m proud to have utilized Cincinnati Children’s branding to design the web screens. I realized that I wasn’t just creating nice visuals for a website; I’m designing solutions that will leave a positive impact. This project definitely solidified my decision to get into UI/UX design and user research.