Exploring Potentially Modifiable Factors That Influence Treatment Non-Adherence Amongst Pediatric Growth Hormone Deficiency: A Qualitative Study

INTRODUCTION: A recent systematic review found that up to 71% of children with growth hormone deficiency and their families are non-adherent to treatment as prescribed. A key way to better understanding the complex issue of pediatric non-adherence is to explore the perceptions and experiences of the parent/caregiver. Our study is the first to look specifically at the potentially modifiable factors that influence non-adherence to rhGH treatment amongst parents/caregivers of children with this endocrine disorder. METHODS: Fourteen semi-structured telephone interviews were conducted to explore parents/caregivers’ perceptions and experiences of their child’s condition and prescribed treatment, in addition to their perceived relationship with their healthcare professional. The findings were thematically analyzed and narratively synthesized, in line with the qualitative approach of Braun and Clarke (2006). RESULTS: Potentially modifiable factors that influence non-adherence to growth hormone treatment were grouped under four themes: 1. Device Burdens, 2. Treatment Considerations, 3. Logistical Interferences and 4. Interpersonal Influences. CONCLUSION: Our exploratory study presents the wide range of potentially modifiable factors that influence the way in which growth hormone treatment is used. These findings can, in turn, be used to inform and promote the development of targeted, adherence-focused interventions, to support growth hormone deficient children and their families and optimize the use of prescribed growth hormone treatment within endocrine clinical practice.