The Pediatric Growth Hormone Deficiency Patient Journey: Identifying Opportunities for Digital Health Interventions

Area of Science:

• Pediatric Endocrinology
• Patient Experience Research
• Digital Health

Background:

• Pediatric growth hormone deficiency (PGHD) is a chronic condition impacting growth and development.
• Understanding the patient journey is crucial for identifying unmet needs and improving care.
• No comprehensive patient journey map currently exists for PGHD.

Purpose of the Study:

• To develop the first detailed patient journey map for pediatric growth hormone deficiency (PGHD).
• To identify key challenges and emotional sensitivities experienced by patients and caregivers throughout the PGHD journey.
• To pinpoint opportunities for targeted interventions to enhance care and improve long-term outcomes.

Main Methods:

• Secondary data analysis of interviews and focus groups from 62 patients and caregivers across five European countries.
• Utilized a prototype digital health solution to guide discussions.
• Applied grounded theory methodology for data analysis.

Main Results:

• Developed a six-stage patient journey map for PGHD: awareness, diagnosis, treatment planning, treatment initiation, treatment maintenance, and transition.
• Revealed specific emotional sensitivities and challenges at each stage of the journey.
• Highlighted areas for potential intervention to improve patient adherence and outcomes.

Conclusions:

• The developed PGHD patient journey map provides a novel framework for understanding the patient experience.
• Identified critical points for intervention can lead to enhanced support and better management of PGHD.
• This research offers valuable insights for healthcare providers, policymakers, and digital health developers aiming to improve care for children with PGHD.