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

Pediatric growth hormone deficiency (PGHD) is a chronic condition where the pituitary gland fails to produce sufficient growth hormone, leading to delayed growth and developmental challenges. Patient journey maps can provide insight into pain points and potential opportunities for new or improved interventions to enhance care. However, a patient journey map does not yet exist for PGHD. Secondary data analysis was performed on interviews and focus groups from five cohorts in Sweden, the United Kingdom, Luxembourg, France, and The Netherlands. Participants included 62 patients and caregivers who used a prototype digital health solution, which was used to guide discussions. Grounded theory was used to analyze the data, resulting in a patient journey map comprising six stages: awareness, diagnosis, treatment planning, treatment initiation, treatment maintenance and transition. This provides the first detailed PGHD patient journey map, revealing emotional sensitivities and challenges at each stage, and suggesting areas for targeted interventions to improve adherence and long-term outcomes.