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Table 1 Concepts and measures (youth and parent surveys)

From: Diabetes MILES Youth–Australia: methods and sample characteristics of a national survey of the psychological aspects of living with type 1 diabetes in Australian youth and their parents

Concept Measure or variable Number of items
  Youth version (age group: years) Parent version
10–12 13–19
About You
 Demographics Age, gender, family composition, language, education, employment 12 13 12
Health insurance, financial status    3
 Stressful life events Items adapted from Recent Life Events Questionnaire [48]    14
 Diabetes history Diabetes type, treatment, duration, family history 4 4 8
Mood
 General quality of life Item from MIND Youth Questionnaire (MY-Q) [7] derived from Diabetes Quality of Life for Youth–Short Form [49] 1 1  
 Well-being WHO-5 Well-being Scale [7, 50–52] 5 5 5
 Depressive symptoms Patient Health Questionnaire for Adolescents (PHQ-A) [53, 54]   8  
 Anxiety Generalised Anxiety Disorder Scale (GAD-7) [55]   7 7
Feelings About Diabetes
 Diabetes distress Problem Areas in Diabetes–Teen version (PAID-T) [19]   26  
Problem Areas in Diabetes–Parent of Teens version (P-PAID-T) [29]    26
 Family conflict Items from MY-Q [7] derived from the Diabetes Family Conflict Scale [56] 2 2  
 Responsibility for diabetes management Items from MY-Q [7] 2 2  
Items modified from the Diabetes Family Responsibility Questionnaire [57]    5
Health & Health Checks
 General health Other health conditions 1 1 1
Weight, height 2 2  
 Perceived healtha Self-rated health   1  
 Diabetic ketoacidosis (DKA) Incidence of diabetic ketoacidosis   1 3
 Worry about hyperglycaemia Items from the Hyperglycaemia Avoidance Scale [58]    3
Diabetes Care
 Blood glucose monitoringa Self-reported frequency of self-monitoring of blood glucose (SMBG) 2 2 2
 HbA1c Self-reported HbA1c 2 2 4
 Insulin managementa Insulin dose frequency 1 1 1
Insulin forgetting & omitting adapted from MY-Q [7] and Adolescent Diabetes Needs Assessment Tool (ADNAT) [59]   3  
Hypoglycaemia
 Hypoglycaemia frequency Items adapted from Hypoglycaemia Awareness Questionnaire (HypoA-Q) [60]   6 7
 Hypoglycaemia awareness Gold score [61]   1 1
Item adapted from HypoA-Q [60]   1 1
 Fear of hypoglycaemia Hypoglycaemia Fear Survey for parents (PHFS) and children (CHFS) [62]   25 25
 Technical/medical supporta Technology and hypoglycaemia    2
Communication with doctor about hypoglycaemia    2
Eating Habits
Diabetes-specific eating behaviours Diabetes Eating Problem Survey-Revised (DEPS-R) [63]   16  
Binge eating frequency adapted from MY-Q [7]   1  
Body image Gender-specific body image silhouettes from BMI-based Silhouette Matching Test (BMI-SMT) [64, 65]   3  
Health Care Team
 Patient-centred communication (PCC) PCC subscale of the Health Care Climate Questionnaire [66, 67]   5 5
 Treatment satisfaction Items from MY-Q [7]; derived from the Diabetes Treatment Satisfaction Questionnaire (DTSQs) [68] 3 3 3
 Health professional supporta Free text: (what I wish health professionals knew…) 1 1 1
 Transition Items adapted from Online Transition to Adulthood Surveys for Youth with Chronic Illness [69]    3
 Diabetes carea Child’s diabetes healthcare providers & attendance    7
Support to Manage Diabetes
 Resilience Diabetes Strengths and Resilience Measure for Adolescents (DSTAR-Teen) [70] 12 12  
 Self-efficacy Maternal Self-Efficacy for Diabetes Management Scale [71]    17
 Social supporta Free text: (what I wish friends/teachers/general public knew about diabetes) 2 2 3
(what friends/teachers do to help) 2 2  
(what would make it easier for you/your child…)    2
 Parental supporta 2 free text: (what I wish my parents knew about diabetes; what my parent do to help me..) 2 2  
 NDSS support Free text   1 1
 Technologya Use of ‘apps’ for diabetes management 5 5 -
 Final comments Free text 1 1 1
 Unique ID Child’s NDSS Number 1 1 1
  1. aDesigned by the research team in the absence of relevant and suitable standardised measures
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