Table 1 Concepts and measures (youth and parent surveys)

 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

 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

 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

 General health

Other health conditions

1

1

1

Weight, height

2

2

 Perceived health^a

Self-rated health

1

 Diabetic ketoacidosis (DKA)

Incidence of diabetic ketoacidosis

1

3

 Worry about hyperglycaemia

Items from the Hyperglycaemia Avoidance Scale [58]

3

 Blood glucose monitoring^a

Self-reported frequency of self-monitoring of blood glucose (SMBG)

2

2

2

 HbA1c

Self-reported HbA1c

2

2

4

 Insulin management^a

Insulin dose frequency

1

1

1

Insulin forgetting & omitting adapted from MY-Q [7] and Adolescent Diabetes Needs Assessment Tool (ADNAT) [59]

3

 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 support^a

Technology and hypoglycaemia

2

Communication with doctor about hypoglycaemia

2

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

 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 support^a

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 care^a

Child’s diabetes healthcare providers & attendance

7

 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 support^a

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 support^a

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

 Technology^a

Use of ‘apps’ for diabetes management

5

5

-

 Final comments

Free text

1

1

1

 Unique ID

Child’s NDSS Number

1

1

1