Narrative medicine approach for assessing the emotional experience of children and adolescents treated with daily rhGH and their caregivers

Domenico Corica^1*Cecilia Lugarà¹Valentina La Malfa¹Maria Pecoraro¹Letteria Anna Morabito¹Giorgia Pepe¹Angela Alibrandi²Tommaso Aversa¹Malgorzata Gabriela Wasniewska¹

• ¹Department of Human Pathology of Adulthood and Childhood “G. Barresi”, University Hospital “G. Martino”, Pediatric Unit, University of Messina, Messina, Italy
• ²Universita degli Studi di Messina Dipartimento di Economia, Messina, Italy

Recombinant human growth hormone (rhGH) therapy is a long-term, injective treatment, which can be burdened by emotional burden in patients and their caregivers. Narrative medicine can help the medical team to identify patients who are experiencing this negative emotional burden. Aims of this study were: 1. To investigate the emotional experience and the Health-Related Quality of life (HRQoL) of children and adolescents treated with daily rhGH and their caregivers through a narrative medicine approach. 2. To identify the factors influencing the emotional experience. Patients on rhGH therapy for at least one year were included. Two trained psychologists asked each of the patients and their caregivers three open-ended questions. Data on emotional experience, acceptance of therapy, satisfaction and awareness of treatment, adherence, discomfort towards peers, therapy-related stress, future plans were extrapolated. Patient and parental HRQoL were also assessed. Fifty-three pediatric patients were recruited (mean age 12.3±2.87 years; 62.3 % male; 30.2% prepubertal). Distress/anxiety was reported in 41.5% of cases. Discomfort toward peers and therapy-related stress were reported in 24.5% and 49.1% of cases, respectively, and both correlated negatively with patients' emotional experience (p=0.019 and p=0.000, respectively) and acceptance of therapy (p=0.015 and p=0.001, respectively). Patient's emotional experience was influenced by stress (OR 0.02, 95%CI 0.004-0.132, p= 0.000) and patient's acceptance of therapy (OR 10.7, 95%CI 3.13-36.5, p=0.000). These latter results were confirmed by multivariate analysis (stress: OR 0.028, 95%CI 0.003-0.251, p=0.001; patient acceptance of therapy: OR 13.1, 95%CI 2.25-76.88, p=0.004, respectively), independently of age and sex. The emotional experience of patients on daily rhGH is negatively affected by non-acceptance of therapy and therapy-related stress. The narrative medicine approach is useful in early identification of emotional burden and promote implementation of strategies to improve psycho-social health for both patients and caregivers.