A national survey of the psychological well-being of adolescents with diabetes and their parents: first results from Diabetes MILES Youth – Australia — ASN Events
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A national survey of the psychological well-being of adolescents with diabetes and their parents: first results from Diabetes MILES Youth – Australia (#279)

Virginia Hagger 1 2 , Steven Trawley 1 2 , Christel Hendrieckx 1 2 , Renza Scibilia 3 , Fergus Cameron 4 , Frans Pouwer 5 , Timothy Skinner 6 , Jane Speight 1 2
  1. Australian Centre for Behavioural Research in Diabetes, Deakin University and Diabetes Victoria, Melbourne, Victoria, Australia
  2. Centre for Social and Early Emotional Development, School of Psychology, Deakin University, Melbourne, Victoria, Australia
  3. Diabetes Victoria, Melbourne, Victoria, Australia
  4. Department of Endocrinology and Diabetes and Centre for Hormone Research, Royal Children's Hospital and Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
  5. Centre of Research on Psychology in Somatic diseases (CoRPS) & Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands
  6. School of Psychology and Clinical Sciences, Charles Darwin University, Casuarina, Northern Territory, Australia

The Diabetes MILES Youth Study (MYS) was the first large-scale national survey in Australia to focus on the psychosocial aspects of living with diabetes among adolescents with type 1 or type 2 diabetes (T1D / T2D) and their parents. The overall aim was to examine emotional well-being (the focus here), as well as self-care behaviours, support and unmet needs to inform future health policy and service provision.

The parents of 6,345 (59%) National Diabetes Services Scheme (NDSS) registrants aged 10-19 years (n=5,928 with T1D; n=417 with T2D) who had consented to being contacted for research received a postal invitation asking them and their child to complete the online MYS. The survey comprised study-specific items and validated scales; emotional well-being (WHO-5) and depressive symptoms (PHQA-8) are reported here.

781 (13%) youth with T1D responded: (mean±SD) age 14±3 years; 61% girls; diabetes duration 6±4 years; 52% insulin pump; self-reported HbA1c 64±7 mmol/mol (8.0±1.6%) 57% HbA1c>58 mmol/mol; 32% rural/regional. Eleven youth with T2D responded, thus no further results from this group are presented. 826 (14%) parents (88% mothers) of youth with T1D responded.

28% of young people reported impaired emotional well-being (WHO-5). 18% felt they often have too much responsibility for their diabetes care.  Adolescents (aged 13-19 years) completed the PHQA-8, of whom 29% reported moderate-to-severe depressive symptoms. Poor emotional well-being and depressive symptoms were weakly correlated with age and HbA1c (p<0.001) but not with diabetes duration. Among parents, 34% reported poor general emotional well-being; 12% of responses indicating likely depression.  

 Around one in four young people with T1D reported impaired emotional well-being or moderate-to-severe depressive symptoms; higher than reported in similar cohorts. Furthermore, poorer psychological well-being was associated with sub-optimal glycaemic control. While people from regional/rural Australia were well represented, girls and pump users were over-represented. The very low response from youth with T2D indicates other approaches are required to investigate their needs. In-depth analyses are ongoing and study results will continue to highlight the unmet psychological needs of young people with T1D and their parents and how policy and practice can be improved.