Quality of life and satisfaction with treatment for children with type 1 diabetes and their parents

Abstract

Care and treatment provided at hospital clinics has important implications for patients' satisfaction, and often their social, psychological and physical quality of life. The satisfaction of patients with Type 1 diabetes (T1D) and their parents with the care they receive from their diabetes clinic can have an impact on quality of life (QoL) and further, treatment adherence. There is a particular risk for adolescents with T1D, who often disengage from family and treatment during the transition period between childhood and adulthood, and are prone to lower QoL. With this knowledge, this 2- part study aimed to assess satisfaction with service delivery at the Mater Hospital and the Lady Cilento Children's Hospital in Brisbane, Australia, for young children and adolescents with T1D and their parents. We initially conducted interviews with adolescents, parents and clinicians to gather information regarding service delivery including what was important and satisfying as well as perceptions of T1D consequences for QoL. A number of themes developed during these interviews - patients were dissatisfied with mostly administrative issues such as wait times and seeing different doctors each time they went to the clinic, while clinicians stressed that booking flexibility, seeing the same team each time and losing patients were concerns. Clinicians, parents and adolescents agreed that T1D often negatively affected quality of life. The findings from the interviews, along with further validated instruments, have been used to develop a questionnaire package to further explore satisfaction of various services and aspects of clinical care, confidence in diabetes, and social, physical and psychological QoL. Data collection is currently underway and it is hoped that the findings will inform future clinic practices.L720732762015-11-20 <br />