Stories of experiences of care for growth hormone deficiency: the CRESCERE project

Aims: Growth hormone deficiency therapy is demanding for patients and caregivers. Teams engaged in the clinical management of growth hormone deficiency therapy need to know how families live with this condition, to provide an adequate support and prevent the risk of withdrawal from therapy. Methods: Using Narrative Medicine, testimonies from patients, their parents and providers of care were collected from 11 Italian centers. Narrations were analyzed throughout an elaboration of recurring words and expressions. Results: Although care management and outcomes were considered satisfying in the 182 collected narratives, recurring signals of intolerance among adolescents and the worry of not being well informed about side effects among parents are open issues. Conclusion: Narratives found that communication issues could decrease adherence and influence the physicians’ clinical practice. Lay abstract: Using Narrative Medicine, testimonies from children and adolescents with growth hormone deficiency, their parents and providers of care were collected in 11 Italian Centers. Although the general high level of satisfaction for the results of the treatment, the analysis of the narrations revealed that adolescents can show recurring signals of intolerance and parents can feel worried and not well informed about side effects. Communication issues could decrease the adherence to therapy, and teams engaged in the clinical management of growth hormone deficiency need to strengthen their communication with all the family members, to provide an adequate support and prevent the risk of withdrawal from therapy.