Type 1 diabetes (T1D) is one of the most common chronic illnesses in paediatric populations, affecting more than one million children and adolescents (0-18 years old) worldwide. As there is no cure for diabetes yet, management of diabetes requires demanding and complex self-care tasks, including administration of insulin (with multiple daily injections or an insulin pump) and monitoring of glucose levels multiple times per day. This can be challenging and have an impact on the quality of
life (QoL) of children and adolescents with diabetes. Moreover, treatment with insulin can lead to hypoglycaemia (low blood glucose level), which can involve symptoms including tiredness,
confusion, and shakiness, and in severe cases, can result in loss of consciousness, coma, and, rarely, death. Even though there have been technological developments, such as continuous glucose monitoring devices, that may help to prevent or reduce hypoglycaemia, many young people with T1D still experience multiple episodes of hypoglycaemia on a weekly basis. In addition, they have to deal with the constant threat of having hypoglycaemia. This can be stressful and frightening for them and
their families and can have a huge impact on their lives. Although the physical consequences of hypoglycaemia are well documented, it is not yet clear how hypoglycaemia affects QoL of children and adolescents with T1D.
Therefore, the aim of this thesis was to examine the impact of hypoglycaemia on QoL in children and adolescents with T1D. To address this research question, three studies with different
designs and methodologies were conducted.
The first study was a cross-sectional quantitative study involving 96 adolescents with T1D, that examined independent associations between frequency of hypoglycaemia, perceived severity of hypoglycaemia and fear of hypoglycaemia and QoL. In the first steps of the model, female gender, higher HbA1c, higher frequency of severe hypoglycaemia, and higher perceived severity of severe and self-treated hypoglycaemia were significantly associated with lower diabetes-specific QoL. However, in the final model, fear of hypoglycaemia was the only significant independent predictor of diabetesspecific QoL. Adolescents with greater fear reported lower diabetes-specific QoL. These results
highlight the importance of examining subjective experiences with hypoglycaemia when investigating the impact of hypoglycaemia on QoL.
The second study was a systematic review that evaluated previous studies that examined the association between hypoglycaemia and QoL and related outcomes. Results of this review indicated
that the evidence for an association between severe hypoglycaemia and generic and diabetes-specific QoL was inconclusive. Severe hypoglycaemia was associated with greater worries about hypoglycaemia, but there was inconclusive evidence for diabetes distress, depression, anxiety, disordered eating, or posttraumatic stress disorder. The different methodological approaches that have been used for the measurement of hypoglycemia and psychological outcomes might have contributed to discrepant findings across studies. This highlights the importance of developing new tools to measure the impact of hypoglycaemia on QoL in children and adolescents with T1D. These tools should be age appropriate and allow adolescents to indicate personal preferences regarding what is important for their QoL.
The third study was a qualitative web-based multi-country study that explored the impact of hypoglycaemia on QoL in 75 adolescents with T1D. To address the limitations of previous studies, a novel, individualized approach to measure QoL was used. Participants reported that both hypoglycaemia and living with the risk of hypoglycaemia impacted on various, important domains of their QoL, such as friends, family, school, sports, and sleep. Hypoglycaemic episodes had a physical, emotional, social, cognitive, and behavioural impact on different domains of QoL. The risk of hypoglycaemia had an impact on QoL through worries, reduced freedom, and sub-optimal glucose management. Future studies should investigate whether interventions aimed at reducing this impact could help to improve QoL in adolescents with diabetes.
The findings of this thesis illustrate that hypoglycaemia can impact on QoL in young people with T1D, not only through experiences of hypoglycaemia episodes per se, but also via worries or fear about hypoglycaemia. This highlights the importance of further exploring the impact of hypoglycaemia on QoL using appropriate measures, and the need to address this impact in individualized clinical care, in order to minimize the burden of hypoglycaemia for young people with T1D.