Introduction: Type 1 diabetes (T1D) is one of the common chronic diseases of childhood. T1D management is affected both by physiological and behavioral factors. Some patients and their parents choose to conceal the disease from others. Concealment of disease status is not unique for T1D, and has been shown to adversely affect clinical outcomes, social support and well-being of patients with other chronic conditions. There is limited data on the effects of concealment of T1D in adolescence, however studies have shown that concealment is prevalent to some extent among children and young adults with T1D. We aimed to evaluate the association between concealment of T1D in adolescence and social support, quality of life, adherence to treatment, and metabolic control.
Methods: We collected cross-sectional data on 69 adolescents with T1D, aged 1218 years, followed-up at or diabetes clinic. All participants completed questionnaires regarding diabetes management and psychosocial issues. These included: a demographic questionnaire, The Diabetes Concealment and Fear of Stigma Questionnaire (DCFQ13), Diabetes Quality of Life for Youth (DQOLY), the Perceived Social Support from Friends-PSS-FR, The Acceptance of Disability Scale Modified (ADM), and a modified version of the Rosenberg self-esteem scale. Adherence was assessed via a questionnaire developed at our center. Glycemic control was evaluated by computing a years average of HbA1c measurements. Multivariate regression models were used to assess the association between degree of concealment, psychosocial variables and clinical outcomes.
Results: Fifty-three participants (77%) concealed their disease to some extent. In a multivariate linear regression analysis with concealment as the dependent variable, we found strong evidence of associations between concealment and negative clinical outcomes including diminished adherence to treatment and elevated HbA1C. In addition, there was an association between degree of concealment and psychosocial parameters including lower self-image, increased diabetes-related worries, and reduced peer support.
Conclusion: Our study shows that T1D concealment in adolescents is common, associated with poor clinical outcome, diminished peer support as well as increased diabetes related worries and general stress. These findings suggest that disease concealment may have a more significant role than previously appreciated affecting both glycemic control and quality of life. Addressing the aspects of disease concealment by caregivers, advising patients about the consequences, and offering support if they to choose to reveal their disease, may lead to the much-needed improvement in quality of life and metabolic control in adolescents with T1D.
27 - 29 Sep 2018
European Society for Paediatric Endocrinology