Children and adolescents with diabetes, current state and future possibilities. A study of factors affecting health-related quality of life, competences and treatment results in children and adolescents with type 1 diabetes.

Abstract

This thesis focuses on patient-reported outcome measurements. Through self-report questionnaires, quantitative and qualitative methods we have gained an insight into young people with type 1 diabetes’ (T1D) self-perceived understanding of health-related quality of life and their experiences of own treatment.<br><br> Health-Related Quality of Life (HRQOL) of children and adolescents with type 1diabetes (T1D), and the association between HRQOL and mode of treatment, achievement of treatment goals and social situation, were assessed through questionnaires completed by the patients and one of their parents. Patients were recruited from 21 out of 27 paediatric clinics in Norway, and data obtained from the questionnaires were linked to data on diabetic control registered in the Norwegian Childhood Diabetes Registry (NCDR). To assess HRQOL, the European DISABKIDS Generic Module (DCGM-37) and Diabetes-Specific Module (DDM- 10) were used after translation into Norwegian and validation against the Child Health Questionnaire 87 and its parent form, which have been widely used in Norway. In addition, a group of adolescent patients’ experiences with two different mobile phone applications used for diabetes care were evaluated in a qualitative study.<br><br> The psychometric properties of the DISABKIDS instruments were found to be valid and reliable in the Norwegian population (study 1). Through the second study, conducted in cooperation with the NCDR we were able to assess HRQOL measured by the DISABKIDS instruments in a large cohort of young people with T1D. Out of 1967 eligible patients, 937 (48%) responded. Boys experienced higher HRQOL than girls, but for both genders poor metabolic control was associated with impaired HRQOL. No association was found between HRQOL score and treatment modality (i.e. insulin pump versus multi-injections) in this intensively treated population. Parents scored their children’s HRQOL as poorer than the children themselves. Compared to similar studies elsewhere in Europe, the Norwegian children scored similarly on the DCGM-37, but considerable discrepancies were found when comparing the DDM-10 subscales. The low score on the DDM-10 treatment scale indicates that the Norwegian population is less adaptive to their treatment (i.e. carrying their equipment and planning their treatment).<br><br> Twelve adolescents participated in the qualitative study on the development of, and their experiences with, two mobile phone applications as a means of contact and guidance between themselves and the physician. The results suggest that the mobile phone-based diabetes diary gave the participants a new understanding of the cornerstones of treatment through visual impression.<br><br> The studies suggest that HRQOL issues are important both for psychosocial well-being and for achieving treatment goals, and therefore that assessment of HRQOL should be an integral part of clinical practice. The experience with the mobile phone application suggests that this method may be a way to further develop new educational and communication strategies for young people with diabetes and their health care providers. However, randomized intervention studies are needed to evaluate the applicability and potential benefits of such novel methods in clinical practice.