Recommendations for age-appropriate education of children and adolescents with diabetes and their parents in the European Union

Abstract

Education is the keystone of diabetes care, and structured self-management education is the key to a successful outcome. Existing guidelines provide comprehensive guidance on the various aspects of education and offer general and organizational principles of education, detailed curricula at different ages and stages of diabetes, and recommendations on models, methods, and tools to attain educative objectives. The International Society for Pediatric and Adolescent Diabetes guidelines give the most elaborate and detailed descriptions and recommendations on the practice of education, which other national guidelines address on specific aspects of education and care. The aim of the work package on education developed by Better Control in Paediatric and Adolescent Diabetes in the European Union: Working to Create Centers of Reference (SWEET) project was not to generate new guidelines but to evaluate how the existing guidelines were implemented in some pediatric diabetes reference centers. The SWEET members have completed a questionnaire that elaborates on the many aspects of delivery of education. This survey highlights a profound diversity of practices across centers in Europe, in terms of organization as well as the practices and the content of initial and continuing education. A toolbox is being developed within SWEET to facilitate exchanges on all aspects of education and to establish a process of validation of materials, tools, written structured age-adjusted programs, and evaluation procedures for the education of children and adolescents with diabetes.

ISPAD Clinical Practice Consensus Guidelines 2018: Diabetes education in children and adolescents

“…Educators (pediatric endocrinologist or physician trained in the care of children and adolescents with diabetes, diabetes educators, dieticians, psychologists, social workers, and other health care providers) should have access to continuing specialized training in current principles of insulin therapy, new diabetes technologies, advances in diabetes education and educational methods …”

“…There are four key criteria that characterize a structured educational program: The Program has a structured, agreed, written, and evaluated curriculum uses trained educators is quality assured is audited. …”

“…Interdisciplinary teams providing education should include, as a minimum, a pediatric endocrinologist/diabetologist or a physician trained in the care of children and adolescents with diabetes, a diabetes specialist nurse/diabetes educator/pediatric nurse, and a dietician. Furthermore, a psychologist and a social worker are recognized as essential members in the interdisciplinary team …”

Diabetes knowledge in adolescents with type 1 diabetes and their parents and glycemic control

“…A real challenge to implement these recommendations is the poor accessibility to practical programs and tools for education. The inherent humanistic and cultural nature of education makes harmonization more complex than when dealing with medical treatment procedures and the SWEET survey clearly showed the great diversity of practices . It also showed that another recommendation, “Evaluation of educational programs is essential and should focus on outcomes,” was generally not a routine in diabetes education.…”

Organizing person-centred care in paediatric diabetes: multidisciplinary teams, long-term relationships and adequate documentation

“…Health care thus plays an important role, but clinical staff members often experience difficulty in overcoming a variety of obstacles connected to the long-term interaction with these patients in view of their personal situation and social context. There are many general guidelines for successful diabetes care [2-4], but there is a lack of information on how to successfully overcome the double hazard of being an adolescent with a life-threatening disease.…”