By John Seaner
Designing for Childhood, Not Just Compliance:
The PXO Blueprint for Pediatric Clinical Trials
Pediatric clinical trials carry one of the most complex engagement burdens in all of clinical development.
You’re not just recruiting a patient.
You’re recruiting:
- A child.
- A caregiver.
- A family system.
- Sometimes a school, a social worker, or a community network.
And you’re doing it against a backdrop of ethical sensitivity, emotional uncertainty, and regulatory scrutiny.
Operationalizing that complexity requires more than child-friendly graphics or simplified language.
It requires a system built to activate and sustain trust across multiple decision-makers, each with different emotional stakes, informational needs, and practical concerns.
That’s where Jumo Health’s Patient Experience (PX) system delivers unmatched value.
Why Pediatric Trials Fail to Engage
Despite advances in protocol design and site training, pediatric trials remain among the slowest to enroll and hardest to retain.
Consider the barriers:
Parental fear of exposing a child to unknown risks
Low trust in industry-led pediatric research
Limited direct benefit since rare disease patients are 3x less likely to hear about trials than those with common conditions
Burden on family logistics (travel, time off work, childcare for siblings)
Site challenges in managing pediatric consent/assent workflows
Lack of child-centric communication tools that account for developmental stages
And then there’s the unspoken emotional calculus: “What if I say yes, and something goes wrong?”
These aren’t just emotional hurdles. They’re operational failure points if not proactively addressed.
Our PX Model Reimagines Pediatric Trials as Family-Centered Systems
Jumo Health does not treat pediatric participation as an extension of adult engagement.
We treat it as an entirely separate decision ecosystem, one that requires specialized behavioral strategies, co-designed content, and a deep respect for caregiver psychology.
Our PX model for pediatrics includes 4 foundational layers:
Child Activation:
Developmentally tailored education, visualization, and choice-making tools
Caregiver Confidence:
Messaging, scripting, and resources that reduce guilt, fear, and ambiguity
Family System Enablement:
Tools for sibling support, school coordination, and social context planning
Site Adaptation:
Consent/Assent journey maps, training modules, and PX dashboards designed for real-world implementation
Let’s explore each in depth.
1. Child Activation: Meeting Kids Where They Are
Children aren’t mini adults. Engagement must respect their cognitive, emotional, and social development levels.
A PXO approaches pediatric activation with:
Story-Based Visual Consent Tools: Illustrated guides that use characters and narratives to explain what participation will feel like, not just what it is
Age-Specific Comprehension Checkpoints: Ensuring understanding through art, play, and dialog, not passive forms
Gamified Visit Previews: Helping younger children visualize what to expect at each visit using friendly animations and milestone badges
Emotional Scaling Tools: Allowing children to express fear, worry, or confusion using emoji-based check-ins
In one pediatric oncology trial, a PXO improved initial assent comprehension by 72% and reduced refusal rates by 39% at high-volume sites.
2. Caregiver Confidence: Reducing Fear, Building Trust
Parents and guardians are the ultimate gatekeepers. They are also the most emotionally burdened stakeholders.
A PXO supports caregivers with:
Decision Companion Guides: Plain-language documents that explain what questions to ask, how to talk to children, and how to evaluate risk
Benefit-Risk Framing Tools: Neutral but supportive frameworks that show what’s known, what’s unknown, and what matters for their child
Emotional Timeline Coaching: What caregivers can expect to feel (and when) during the trial, from decision guilt to mid-trial fatigue
Parallel Communication Tracks: Materials tailored separately for mothers, fathers, grandparents, and guardians based on segment research
One study on neurodevelopmental disorders used PX-based caregiver modules to reduce consent withdrawal by 44% in the first 3 months.
3. Family System Enablement: Engaging the Whole Household
Participation impacts the full family ecosystem.
A PXO addresses:
Sibling Explainer: Simple age-appropriate guides that help siblings understand what’s happening
School Collaboration Toolkits: Support for absences, documentation for educators, and behavioral management guidance
Remote Participation Planning: Solutions for telehealth, flexible visit scheduling, or hybrid participation when travel is a barrier
Caregiver Employment Support Templates: Letters for employers explaining trial schedules and caregiver responsibilities
This ecosystem approach transforms participation from an isolated medical decision to a sustainable, supported family choice.
4. Site Adaptation: Operationalizing Pediatric Patient Experience
A PXO doesn’t stop at the patient and caregiver. It equips sites with:
Consent/Assent Workflow Maps: Distinct tracks for different age groups and caregiver types
Role-Play Scripts and Video Training: Teaching coordinators how to respond to fear, confusion, or ethical hesitation
PX Dashboards for Pediatric Trials: Live data on comprehension, drop-off risk, and emotional readiness
Localization Support: Materials tailored to community norms, language, and cultural expectations
In a global pediatric asthma study, site-reported stress during consent sessions dropped by 61% after PX rollout, and time to full consent/assent completion decreased by 42%.
PXO Metrics in Pediatric Trials
Jumo Health measures pediatric patient experience performance using:
- Pediatric Engagement Readiness Score (PERS): Indicates overall readiness and emotional state of child and caregiver pre-enrollments
- Assent Comprehension Index (ACI): Measures child understanding in age-specific brands
- Caregiver Confidence Score (CCS): Tracks how informed and supported caregivers feel across the trial
- Participation Fragility Index (PFI): Redirects risk of mid-trial withdrawal due to family system stress
These scores allow for proactive intervention and transparent ROI tracking.
Beyond Participation: Building Trust for Future Research
Children in trials today are the adult participants of tomorrow. Their caregivers are the future advocates or detractors for your brand, your trial, and your science.
Our PX model includes:
Post-Trial Transition Support: Explaining next steps in ways children and families understand
Gratitude and Advocacy Tools: Helping families feel acknowledged, not extracted
Future-Readiness Engagement: Opt-ins for recontact, education, and community building
One PXO pilot study found that over 80% of caregivers were more likely to consider future trial participation, and 74% said they’d recommend participation to other families.
Conclusion: Pediatric Trials Demand More Than Protocol Flexibility
They demand deep respect for childhood, caregiver psychology, and family realities.
As a PXO, Jumo Health provides the infrastructure to operationalize that respect, increase enrollment, improve retention, and reduce risk at every stage.
This is not optional. It’s how we stop treating pediatric patients as a recruitment problem and start seeing them as partners in science.
Contact Jumo Health to see how this PX model can transform your next pediatric trial.
