Drivers and barriers to adherence

Client Needs

Our client faced high discontinuation rates among pediatric patients with a rare liver disease despite demonstrated clinical benefits. They needed to understand the caregiver decision-making factors leading to treatment abandonment.

The Client:

  • Required insights on treatment burden perceptions, logistical challenges, and emotional considerations affecting persistence
  • Needed to differentiate experiences between caregivers who continued therapy versus those who discontinued
  • Sought to explore the role of peer networks and digital communities in shaping caregiver behaviors and support-seeking
  • Lacked a comprehensive framework to design interventions improving treatment retention

Our Solution

3-month digital research fielded with the Motivo Lab online community to engage caregivers through digital channels to capture real-world experiences, including

  • Diary tracking treatment routines and challenges
  • Journey mapping documenting experiences from initiation through continuation/discontinuation
  • Systematic tracking and assessment of care routine, treatment burden, and referral experience

Output & Implications

  • Identified actionable discontinuation drivers and intervention opportunities across practical, emotional, and informational domains
  • Developed retention strategies addressing both clinical outcomes and caregiver experience
  • Optimized educational materials and identified social support resource to inform engagement strategies and service development