The impact of type 1 diabetes (T1D) on patient’s lives has been described in the literature, but little insight exists on the experience of newly diagnosed pediatric patients. This timeframe is unique for clinical reasons (honeymoon period) and psychosocial reasons (adapting to living with T1D). This project aimed to identify concepts core to describing the experience of pediatric patients in the first two years of T1D and organize them into a framework.
Based on literature and clinician input, a semi-structured interview guide was developed. Patients (n=29) ages 7-17 recruited by an agency and childrenwithdiabetes.com participated in face-to-face (age <10) or phone interviews. Interviews were recorded, transcribed, and inductively coded using ATLAS.ti software. Detailed concepts were categorized into overarching domains reflecting their conceptual underpinning to design the framework.
The sample mean age was 12 years, and was 48% male and 72% white. The interviews confirmed symptoms of hyper and hypoglycemia already described in the literature, but above all, they provided in-depth information as to how symptoms and impacts are experienced within the first two years of T1D diagnosis.
The proposed conceptual framework includes symptoms, impacts, and disease management. Symptoms include hyper and hypoglycemia. Impacts include peers, school, sports, emotions, diet, preoccupation with the disease, conflict with parents (adolescents only) and parental supervision (children only). Disease management focused on checking blood glucose, giving insulin, carrying supplies, the pain of treatment, and adapting to management of the disease over time.
This study highlights the impact of T1D within the first two years of diagnosis in pediatric patients. It provides a conceptual foundation for the measurement of the benefit of medical or psychosocial interventions and monitoring while patients and their caregivers assimilate to the implications of the disease on their day-to-day lives.
E. Senior: Employee; Self; UCB, Inc. R. Fong: Employee; Self; UCB, Inc.. A. Christian: None. J.T. Markowitz: None. S. Strzok: None. T. Schmidt: None. K. Harris: Employee; Self; UCB, Inc.. P. Marquis: None.