Table 1.
Concepts and measures (youth and parent surveys)
| 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 |
aDesigned by the research team in the absence of relevant and suitable standardised measures