A weekly symptom survey for children in palliative care, rebuilt with compassion, transparency and clarity
Image created by ChatGPT
for Children
PediQUEST: The redesign
Key changes: A human-centered approach for participants in a twelve week survey to measure pain of children with advanced cancer or serious neurological disease. Weekly reports help providers better understand what’s happening at home and “denormalize” pain through personalized care interventions for pediatric palliative care patients.
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Built for a trial, not for a tired parent.
PediQUEST runs inside NIH-funded palliative-care trials at Mass General Brigham for Children. Every week for three months a parent opens it and reports how their child is doing: pain, sleep, appetite, mood. It was built as a clinical instrument, and it behaves like one. Questions appear as dense mixed lower-case and caps. A pop-up scolds you for skipping a line. The final report has tiny numbers and confusing colors that may create more anxiety than clarity.
The person on the other end is usually exhausted, and often answering for a child who can’t answer for themselves.
Home
The report
A yes / no question
A frequency question
Days with symptoms
Entering a date
Drag each handle to see the app parents use today, vs. the redesign.
Twelve question types, one scalable system.
Across five surveys, there are fourteen raw question patterns. I mapped them onto twelve reusable components; two of those, the frequency scale and the rating scale, each absorb two patterns. The chart shows how every survey is built from that set.
Hover or tap a component, a segment or a survey name to explore the system.
Four parents who use the current app reviewed the new wireframe flow.
Four things came up during every walk-through.
- 01
The check-in landed
Parents loved the personal check-in — the one moment the survey asks after them, not only their child.
- 02
Stopping had to be safe
They appreciated being able to stop and come back, because nobody finishes a 73-question survey in one sitting when their kid is sick. Knowing their responses would be saved even if they stepped away reduced stress and anxiety.
- 03
The format grated
Everyone found the current question format, with its capitalized lettering, annoying.
- 04
“Where does my data go?”
Most wanted a clear answer to one question: where does my data go, and how can I retrieve it to study myself or share with providers?
The experience should feel as supportive as the tool itself.
The wireframe flow
Fifteen new screens to test the question patterns with parents.
Question types and modals
One screen per question pattern, the set the components had to cover, then the save-and-exit moment and the prompt that brings a parent back.
Click any screen to read it →
"Everyone asks how my child is doing, but it’s rare when anyone asks about me. It’s nice to feel seen.”— Mother of a child with advanced cancer
