ESPE Abstracts (2018) 89 P-P2-118

[ldquo]What do You Know About Your Diabetes?': A Qualitative and Quantitative Study of Teenagers and Young Adults' Understanding of their Disease

Jehanne Maleka, Cécile Petit-Bibalb, Elsa Denisa, Juliette Eroukhmanoffa & Gianpaolo De Filippoa


aAssistance Publique-Hôpitaux de Paris, CHU Bicêtre, Service de Médecine des Adolescents, Le Kremlin-Bicêtre, France; bAssistance Publique-Hôpitaux de Paris, CHU Bicêtre, Service d’Endocrinologie et Diabétologie de l’Enfant, Le Kremlin-Bicêtre, France


Background: Type 1 diabetes (T1D) in teenagers is challenging: the constraints of diabetes add up to the specificities of a delicate age; moreover, this period of life is often associated with impaired metabolic control (i.e. higher hemoglobin A1c - HbA1c). Therapeutic Patient Education (TPE) enables people with chronic diseases to manage their illness and yields benefits in both health and financial terms. The first step of TPE approach is to make an “educational diagnosis” (ED). We decided to do it through a specific questionnaire determining what the patient knows, doesn’t know or believes, and would like to know, in order to fit specific needs.

Objective: Our principal objective is to make the ED with the description of the knowledge, beliefs and topics of interest of a cohort of teenagers and young adults with T1D (11-25 years old) by analysing their responses to an original questionnaire mostly made of open-ended questions about T1D and its constraints. The secondary objective is to look for a relationship between glycemic control and the level of understanding of the multiple aspects of T1D.

Patients and methods: We displayed a questionnaire made of 35 questions including 22 open-ended questions about T1D, concerning insulin, glycemia, nutrition, sports, contraception and procreation. Patients were either hospitalized or consulting their diabetes referent when they filled the questionnaire. A control of their HbA1c was systematic the day of the consult or the first day of their hospital stay. Their free answers were then grouped into categories and enabled us to make a qualitative and quantitative analysis.

Results: One hundred and two patients answered the questionnaire (mean age of 15.6 years, M/F 1.5:1). Median duration of diabetes was 8.2 years, 38.2% were on insulin pump therapy. The mean HbA1c of the entire group was 8.8%. The answers highlights that only 22% of the patients know that T1D is an auto-immune disease, the most known and scared complication of diabetes is diabetic retinopathy, 52% know the utility glycemic monitoring, 18.6% think that they can’t practice some sports, 15.7% wonder about their fertility and 49% fear to transmit their disease to their offspring. 56,4% would like to know more about the origin of diabetes. There is a trend, despite not reaching statistical significance, between better knowledge of items concerning the disease itself and its physiopathology and a better metabolic control, expressed as lower HbA1c levels.

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