Quality of life and type 1 diabetes: a study assessing patients’ perceptions and self-management needs

Abstract

Dácil Alvarado-Martel,1,2 Rebeca Velasco,1 Rosa M Sánchez-Hernández,1,2 Armando Carrillo,1,2 Francisco Javier Nóvoa,1,2 Ana María Wägner1,2 1Servicio de Endocrinología y Nutrición, Complejo Hospitalario Universitario Insular Materno-Infantil de Gran Canaria, 2Instituto Universitario de Investigaciones Biomédicas y Sanitarias, Universidad de Las Palmas de Gran Canaria, Las Palmas de Gran Canaria, Spain Purpose: The main objective of this study was to assess quality of life (QoL) and treatment satisfaction in a group of patients with type 1 diabetes (T1D) and explore their needs regarding and their perception of QoL living with diabetes.Materials and methods: Patients with type 1 diabetes attending the outpatient endocrinology clinics of a reference hospital were invited to participate in a cross-sectional study. Clinical and sociodemographic data were obtained (interview and clinical records), and diabetes-related QoL was assessed using a standardized questionnaire. In 67 participants, satisfaction with treatment was also assessed, and an open interview was performed, assessing the impact of diabetes, long-term worries, flexibility, restrictions, and self-perception of QoL. Descriptive statistical analysis, bivariate analysis, and multivariate analysis were performed in order to find factors associated with QoL. Interviews were analyzed and summarized questionwise.Results: Mean patient age was 31.4±11.6 years, diabetes duration 14.2±9.3 years, and glycated hemoglobin (HbA1c) 8.5%±1.9% (69±20.8 mmol/mol International Federation of Clinical Chemistry [IFCC]). The questionnaires showed good average QoL scores (94.6+22.9) and treatment satisfaction scores (25.7±6.7). QoL worsened with increasing HbA1c, female sex, severity of complications, and lower education (r2=0.283, P<0.005). In the open interview, 68.5% of the patients reported that diabetes had changed their lives, 83.5% identified complications as their most important long-term concern, and 59.7% said that they needed more training to manage the disease.Conclusion: Poor glycemic control, lower education, complications, and female sex are associated with worse QoL. Semi-structured interviews identified aspects not included in the standardized questionnaires. Keywords: type 1 diabetes, qualitative, quality of life, self-management, patients’ perceptions