agenda

DAWN YOUTH

Interim resultsin Italy

Healthcare Professionals, Parents/Carers, and Young

Adults with Diabetes Surveys

March 2008

Background

Agenda

Key Objectives

Methodology/Sample

Young adults/parents/carers

Parents/carers

Healthcare professionals

1

2

3

4

5

6

7

8

Conclusions

Recommendations

Background 1

Background (1)• In 2001, Novo Nordisk and IDF conducted the DAWN (Diabetes,

Attitudes, Wishes and Needs) study involving more than 5400 diabetes patients, and more than 3800 healthcare professionals in 13 countries.

• The main purpose of the research was to identify new ways to overcome the psychosocial barriers to optimal health and quality of life of people with diabetes and those at risk

• As a result of the DAWN study, the DAWN programme, a global Novo Nordisk initiative in collaboration with the IDF and an International Expert Advisory Board was established. The results of the study were published in lay and peer-reviewed journals

• In its continued commitment to people with diabetes, Novo Nordisk together with IDF and ISPAD have now undertaken another survey to explore perceptions among

• young adults with diabetes• parents of children with diabetes• healthcare professionals seeing children with diabetes.

The aim of this DAWN Youth survey was to

Gain understanding of the challenges and issues of young adults living with diabetes, as well as carers, parents and others facing the responsibility of supporting them

• help raise awareness of the unique challenges related to management of childhood diabetes

• inspire new efforts to improve the care for children and young people with diabetes and their families

Identify new avenues for improvements in the context of psychosocial management of diabetes among children, with a view

Create a new platform for dialogue among all key stakeholders to setup coordinated initiatives

Key Objectives 2

Key Objectives

• Primarily, DAWN Youth was intended to address the following challenges:

• Exploring the attitudes, wishes and needs of young adults with diabetes

• Inspire the work of national and international DAWN Youth boards engaged in prioritizing and driving new efforts to improve psychosocial support for children with diabetes

• Give input to clinical and national surveys, initiatives and awareness programmes

Methodology/Sample 3

Questionnaire development

• Several international dialogue events were held with representatives from national DAWN Youth boards and leading paediatric diabetologists, nurses, psychologists, youth ambassadors, parent ambassadors, policy-makers, and sociologists from more than 15 countries.

• The DAWN Youth International Steering Committee, including IDF and ISPAD, approved all the surveys used.

Main overall areas that were assessed

• Regimen adherence

• Psychological wellbeing

• Psychosocial adjustment

• Perceived support by domain

• Health care (teams, relationships, access)

• School environment

• Youth organization/activity involvement

• Needs

Methodology (1) In most countries, online surveys were conducted using a 25-30 minute structured

questionnaire.

In Japan, face-to-face interviews were conducted using a 25-30 minute pen & paper questionnaire.

Recruitment was supported by national DAWN Youth committees with the help of national patient associations.

Affiliate offices of Novo Nordisk in each market were responsible for liaising with the national committees/associations in contacting and directing the relevant respondent types to the web-based online questionnaires. This was done via different strategies and specific activities/events set-up in each market to facilitate this process.

All online questionnaires were set-up in a secure password-protected environment and screening questions applied to ensure that only correct/eligible respondents were able to access the respective surveys.

The data for each individual country illustrated within this document shows percentages based on the actual country sample size attained in each case. However, for combined country data based on the total sample size (columns/ bars labelled ‘ALL’), the data is weighted to the ‘average’ sample size achieved per country - so that much larger samples attained in some countries do not overtly bias the overall findings of the study.

Methodology (2)

Three respondent types were recruited:

• Young adults with diabetes aged 18 to 25 years• Parents or caregivers of at least one child or young

person with diabetes aged between 0 and 18 years • Healthcare professionals, these comprised:

Paediatricians and paediatric diabetologists Diabetologists/endocrinologists/diabetes specialists (treating

both adults and children) General Physicians/internists (treating adult and child

diabetics) Paediatric nurses and paediatric diabetes nurses Paediatric dieticians Paediatric psychologists

Sample The sample achieved was as follows:

Country: Healthcare professionals

Parents/ Carers

Young adults with diabetes

TOTAL

Brazil 289 653 394 1,336

Denmark 30 601 204 835

Germany 78 196 195 469

Italy 78 147 311 536

Japan 0 260 235 495

Netherlands

38 252 96 386

Spain 51 377 154 582

USA 102 1,613 316 2,031

TOTAL 666 4,099 1,905 6,670 The data displayed in these charts are based on all interviews completed

by 31st January 2008

One eighth of young adults were currently in secondary school; the majority of parents/carers had a child still in full-time education

Q39 (YA): Are you currently in secondary school?Q21 (PC): Is your child still in full-time education?

85%93%

81%

100% 100%

ALL (4099) ITA (147) Child aged 0-9(52)

Child aged 10-14(65)

Child aged 15+(30)

25%

12% 15%9%

4%

ALL (1905) ITA (311) Aged 0-9 at dx(174)

Aged 10-14 at dx(111)

Aged 15+ at dx(24)

% saying YES

Yo

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Par

ents

/ C

arer

s

Base: all young adults with diabetes; all parents/carers

The majority of parents/carers stated that their child with diabetes had a sibling/siblings and nearly half reported the number to be one brother/sister

Base: all parents/carers

Q2 (PC): Now thinking specifically of that child/person with diabetes, how many brothers and sisters does he/she have in total?

19%35%

48%

46%

24%

19%8%

ALL (4099) ITA (147)

More than 2

2

1

None

Par

ents

/ C

arer

s

The majority of children with diabetes were boys, based on parents’/carers’ responses


Q4 (PC): Is this child/young person with diabetes a boy or a girl?

51%43%

49%57%

ALL (4099) ITA (147)

Girl Boy

Par

ents

/ C

arer

s

Three-quarters of HCPs currently personally see more than 5 children/adolescents with Type 1 diabetes each week

Q1 (HCP): Approximately how many children/adolescents with type 1 diabetes do you have under your care that you personally see in an average week?

Base: all healthcare professionals

2%

11%4%6%

11%

6%

11%

6%

20%

15%

17%

21%

41%

10%

17%

ALL ITA

21+

11 to 20

6 to 10

5

3 to 4

2

1

None

Mean: 17.3 30.6

Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Two-fifths of HCPs did not personally see any children/adolescents with Type 2 diabetes each week; just over a third saw 1 or 2 Type 2 patients in a week

Q1 (HCP): Approximately how many children/adolescents with type 2 diabetes do you have under your care that you personally see in an average week?


48%

22%28%

9%

7% 6%

6% 9%4% 3%3% 4%2% 1%

40%

8%

ALL ITA

21+

11 to 20

6 to 10

5

3 to 4

2

1

None

Mean: 2.8 2.7

Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Young Adults, Parents/Carers/HCPs

Analysis

Parents/Carers

Healthcare Professionals

4

5

6

Young Adults,

Parents/carers, HCPs4

Analysis: Young Adults,Parents/carers, HCPs

Diabetes, Diagnosis and Control

Perceptions of Living with Diabetes: QoL

Issues Related to Diabetes Treatment

Social, Emotional, Employment Issues

Diabetes Management/HCP Involvement

Expense of Managing Diabetes/Financial Impact

4i

4ii

4iii

4iv

4v

4vi

4vii

4viii

Education/School Issues

Support from Various Sources

Analysis: Young Adults,Parents/carers, HCPs

Value/Opinions on Diabetes-related Activities

Information Sources on Diabetes

Areas for Improvement in Diabetes Care

Perceptions of Living with Diabetes in Future

4ix

4x

4xi

4xii

Diabetes diagnosis and control

(YA, PC)4i

The vast majority of young adults who answered the survey, or who were being cared for, had type 1 diabetes

Q1 (YA): Firstly, what type of diabetes do you have? Q3 (PC): What type of diabetes does this child/young person with diabetes suffer from?


1%

99%

2%

98%

Young adults(311)Parents/ carers(147)

Type 1 Diabetes

Type 2 Diabetes

On average, young adults said they were diagnosed with diabetes at the age of 9, while parents/carers said their child was diagnosed at 6 years

Q2 (YA): How old were you when you were diagnosed with diabetes? Q5 (PC): How old was your child when he/she was diagnosed with diabetes?


12

9

6.45.7

ALL ITA

Young adults

Parents/ Carers

(1905) (4099) (311) (147)

Q3 (YA): What type of training or information did you receive when you first found out that you had diabetes?

Base: all young adults with diabetes

ALL (1905)

ITA (311)

Information about what diabetes is and what it means to have diabetes

78% 74%

Information about eating the right type of food

71% 68%

Information about the complications of diabetes

54% 42%

Information and training about how to test blood sugars and how frequently

65% 35%

Information and education about treatment and how to follow doctor’s orders

58% 34%

Other information 20% 5%

Don’t know 12% 22%

The majority of parents/carers received information on many aspects of diabetes, while the majority of young adults only received information about the nature of diabetes and eating the right food

ALL (4099)

ITA (147)

Information about what diabetes is and what it means to have diabetes

93% 95%

Information about eating the right type of food

89% 91%

Information and training about how to test blood sugars and how frequently

89% 91%

Information about the complications of diabetes

72% 77%

Information and education about treatment and how to follow doctor’s orders

81% 76%

Other information 27% 15%

Don’t know 2% 2%


Q43 (PC): What type of training or information did you and your child receive when you first found out that he/she had diabetes?

Three-quarters of young adults said their diabetes was rarely or never under control

Q4 (YA) : Which of the following statements best describes how you think you are now dealing with your diabetes


Yo

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g a

du

lts

30%

76%

53%

20%17%

4%

ALL (1905) ITA (311)

My diabetes iswell undercontrol

My diabetes ismostly undercontrol

My diabetes israrely/neverunder control

Perceptions of living with diabetes:

Quality of life and well being (YA, PC)4ii

Three-quarters of young adults could talk to parents or friends, while only 7% could talk to a diabetes doctor

Q5 (YA): At times when you’re feeling frustrated or unhappy about living with your diabetes, who can you talk to about your feelings?

Base: all young adults with diabetesExcludes country answers less than 4%

ALL (1905)

ITA (311)

My friends 47% 73%

My parents 56% 72%

My spouse/partner/ significant other

34% 38%

Friends who also have diabetes

24% 36%

My brothers and sisters 22% 30%

Diabetes nurse 19% 29%

Volunteers at the diabetes association

4% 8%

Diabetes doctor 21% 7%

GP/family doctor 11% 4%

Grandparents 5% 4%

Only one seventh of young adults said it was very important to talk with other people their age who had diabetes like them

Q6 (YA): How important is it for you to talk with other people your age who have diabetes like yourself?


Yo

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g a

du

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6% 1% 1% 1%

35%34% 32% 39%

25%

31% 50% 52%49%

54%

27%14% 16% 12%

21%

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14 atdx (111)

Aged 15+ atdx (24)

Very important(5)

Fairly important(4)

Neitherimportant norunimportant / notvery important /not at allimportant (1, 2, 3)Don't know

Mean rating: 3.7 3.7 3.8 3.6 3.9

Scale: 1 (Not at all important) to 5 (very important)

Over a third of young adults said they were satisfied or very satisfied with the way they were being treated/or had been treated at school

Mean rating: 3.5 3.4 3.3 3.3 3.6

Yo

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g a

du

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Q7d (YA): How satisfied are you with …. the way you are (were) treated at school?

Scale: 1 (very dissatisfied) to 5 (very satisfied)


8% 2% 2% 2%

14%

5% 4% 7% 4%

30% 57% 60% 55%

38%

49%36% 33% 36%

58%

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14 atdx (111)

Aged 15+ atdx (24)

Satisfied/ verysatisfied (4, 5)

Neither / Nor (3)

Dissatisfied/ verydissatisfied (1, 2)

Don't know

The majority of young adults and carers were satisfied or very satisfied with support from the young person’s/child’s friends

Mean rating: 3.8 3.7

Yo

un

g a

du

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Par

ents

/ C

arer

s

Q7c (YA): How satisfied are you with …. the support you receive from your peers/friends? Q12a (PC): How satisfied are you with …. the support your child receives from his/her peers/friends?



4% 1%7%

5%

28% 32%

61% 63%

ALL (1905) ITA (311)


Neither / Nor (3)


Don't know

5% 5%8% 8%

25% 27%

62% 59%

ALL (4099) ITA (147)


Neither / Nor (3)


Don't know

The majority of parents and young adults were satisfied or very satisfied with the level of support they received from doctors

1%9%

2%

19% 29%

72% 68%

ALL (1905) ITA (311)


Neither / Nor (3)


Don't know


Yo

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g a

du

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Par

ents

/ C

arer

s

Q7a (YA): How satisfied are you with …. the support you receive from your doctors/other healthcare professionals? Q12d (PC): How satisfied are you with …. the support you receive from your child’s doctors?



1% 1%7% 6%

14% 15%

77% 78%

ALL (4099) ITA (147)


Neither / Nor (3)


Don't know

Four-fifths of young adults were satisfied or very satisfied with the support they received from their parents/family


Yo

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g a

du

lts


Q7b (YA): How satisfied are you with …. the support you receive from your parents/family?


1%7%

2%

15%18%

78% 80%

ALL (1905) ITA (311)


Neither / Nor (3)


Don't know

Nearly three-fifths of parents/carers were satisfied or very satisfied with the support they received from their friends



Q12c (PC): How satisfied are you with …. the support you receive from your friends?


Par

ents

/ C

arer

s

3% 2%8% 6%

29% 34%

59% 58%

ALL (4099) ITA (147)


Neither / Nor (3)


Don't know

A third of parents/carers were satisfied or very satisfied with the support they received from employers

Mean rating: 3.6 3.3 3.8 3.2 3.1


Q12e (PC): How satisfied are you with …. the support that you, as a parent, receive from your employer?


Par

ents

/ C

arer

s

19%27%

37%

15%

33%11%

13%2%

20%

20%24%

27% 23% 32%

23%

45%33% 39% 33%

23%

ALL (4099) ITA (147) Child aged 0-9 (52)

Child aged10-14 (65)

Child aged15+ (30)


Neither / Nor (3)


Don't know

On average, young adults believed they had a good quality of life


Q8 (YA): Below is a picture of a ladder. The top step indicates the best possible life, and the bottom indicates the worst possible life: where on this ladder would you place your life today?

Scale: 1 (bottom-worst) to 10 (top-best)

6.8 7.1 7 7.17.5

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14 atdx (111)

Aged 15+ atdx (24)

Mean scores

1 – bottom/worst

10 – top/best

Yo

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g a

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Q9 (YA): Please look at the following statements about how people sometimes feel. For each of them, please tell me how often you have felt like this during the last two weeks… I have felt cheerful and in good spirit Q11 (PC) Please look at the following statements about how people sometimes feel. For each of them, please tell me how often you have felt like this during the last two weeks … I have felt cheerful and in good spirit


8% 2% 2% 1%

27%

12% 13% 13%4%

65%

86% 85% 86%96%

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14 atdx (111)

Aged 15+ atdx (24)

Good well-being(more than 50)

Poor well-being(28-50)

Likelydepression (lessthan 28)

Mean rating: 56.4 61.4 60.5 61.8 65.8

Yo

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g a

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Mean rating: 53.8 52.5 50.1 53.3 55.2 50.0 54.5

Par

ents

/ C

arer

s

13% 13% 17%9% 13% 17% 10%

28% 27%31%

31%13%

30%

25%

60% 60%52%

60%73%

52%65%

ALL(4099)

ITA (147) Childaged 0-9

(52)

Childaged

1014 (65)

Childaged 15+

(30)

Malechild (63)

Femalechild (84)

Good well-beingmore than 50)

Poor well-being(28-50)

Likelydepression (lessthan 28)

Over four-fifths of young adults and three-fifths of carers judged their general well being over the last two weeks to be good, based on the WHO-5 measure of well-being

Young adults who were more satisfied with the level of support they received from HCPs achieved higher WHO-5 scores

Q9 (YA): Please look at the following statements about how people sometimes feel. For each of them, please tell me how often you have felt like this during the last two weeks…


Q7a (YA): How satisfied are you with …. the support you receive from your doctors/other healthcare professionals?

38.7

37

58.4

63.9

61.8

46.4

49.3

52.6

55.9

62.4

Verydissatisfied

Dissatisfied

Neithersatisfied nordissatisfied

Satisfied

Very satisfied

All (1905)I taly (311)

Mean scores based on WHO-5 scale of wellbeing

Yo

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g a

du

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Satisfaction with level of support from HCPs

Amongst parents/carers, those who were dissatisfied or very dissatisfied with the level of support from HCPs achieved lower WHO-5 scores


32

38.7

59.5

53.4

52

39.6

42.7

50.5

53.1

58.5

Verydissatisfied

Dissatisfied

Neithersatisfied nordissatisfied

Satisfied

Very satisfied

All (4099)I taly (147)

Mean scores based on WHO-5 scale of wellbeing

Satisfaction with level of support from HCPs

Par

ents

/ C

arer

s

Q11 (PC) Please look at the following statements about how people sometimes feel. For each of them, please tell me how often you have felt like this during the last two weeks …Q12d (PC): How satisfied are you with …. the support you receive from your child’s doctors?

Issues related to

diabetes treatment (YA, PC)4iii

For half of young adults their target HbA1c is 6; for two-fifths of parents/carers, their child’s target HbA1c is 6 or 6.5

Q14 (YA): What level of HbA1c do you try to achieve? Q17 (PC) What is your child’s target HbA1c level?


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10% 8%

7% 7%

18%

21% 20%

28% 27%

16% 18%

19%

ALL (4099) ITA (147)

7.5 or more

7

6.5

6

5.5 or less

Don't know / notstated

8% 2%

15%

3%

29%49%

23%35%

17%

8% 4%7%

ALL (1905) ITA (311)

7.5 or more

7

6.5

6

5.5 or less


Half the young adults with diabetes took their insulin by pen, and three-quarters of parents/carers said their child took insulin by pen

Q10 (YA): How do you take your diabetes medication? Q13 (PC) Now thinking of your child’s medication, how is your child’s diabetes medication administered?


Yo

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Par

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s

2%

22%16%

27%

21%

57%74%

1%ALL (4099) ITA (147)

Pen

Pump

Syringe

Other

8%1%

9%

12%

1%

23%

45%

48% 49%

4%

ALL (1905) ITA (311)

Pen only

Pump only

Syringe only

Pen & syringe

Other

Over four-fifths of young adults with diabetes using pens, pumps or

syringes take 4-6 insulin shots/boluses per day

Q11 (YA): How many insulin shots or boluses do you usually take each day? Q14 (PC) How many insulin shots or boluses does your child usually receive each day?

Base: all who use pens/pumps/syringes; all whose diabetes child uses pens/pumps/syringes

Yo

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g a

du

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Par

ents

/ C

arer

s

2% 1%

22%13%

62%

13%1%

84%

ALL ITA

More than 6shots

4 - 6 shots

1 - 3 shots

DK/Not stated

4% 1%

20%11%

67%

9%

87%

ALL ITA

More than 6shots

4 - 6 shots

1 - 3 shots

DK/Not stated

Base: 1860 311

Base: 4056 147

The majority of young adults monitored their blood glucose 5-8 times per day; the majority of parents/carers said their child monitored it 5-8 times a day

Q12 (YA): How many times do you usually monitor your blood glucose each day? Q15 (PC) In a typical day, how many times does your child/do you monitor his/her blood glucose?


Yo

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Par

ents

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arer

s

3%1%

37% 39%

53% 61%

7%

ALL (4099) ITA (311)

More than 8times

5 - 8 times

1 - 4 times

At no time

Don't know/notstated

2%6%

54%

47%

34%

3%

53%

ALL (1905) ITA (147)

More than 8times

5 - 8 times

1 - 4 times

At no time

Don't know/Notstated

The majority of young adults and parents said that their/their child’s current level of HbA1c was 7.5 – 8.5

Q13 (YA): What is your current or latest level of HbA1c? Q16 (PC) What is your child’s current or latest HbA1c level?


Yo

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Par

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s

7%

37%30%

42% 55%

13% 7%

7%

ALL (4099) ITA (147)

more than 8.5

7.5 - 8.5

less than 7.5


9%2%

37%

16%

38%

16%3%

79%

ALL (1905) ITA (311)

more than 8.5

7.5 - 8.5

less than 7.5


Overall, in both age groups, HCPs estimated that about one half of children/adolescents under their care had adequate levels of HbA1C

Q4 (HCP): What percentage of the children/adolescents with diabetes under your care, aged 0-12 years and aged 13-18 years have adequate levels of HbA1c?


54.6

45.5

48.3

52.6

All

Italy

Patients aged 0-12 years

Patients aged 13-18 years

Healthcare Professionals

(666)

(78)

An average level of HbA1c in these HCPs’ patients under 13 years was 7.4 and in patients aged 13-18 years it was 7.8

Q5 (HCP): On average, what level of HbA1c do these children aged 0-12 years and 13-18 years have?


9% 8%4% 1%

24% 36%

30%22%

34% 33%

ALL ITA

8.0 or over

7.5

6.0/6.5/7.0

5.5 or less

Don't know

Mean level: 7.5 7.4

Pat

ien

ts 0

-12

year

s

Mean level: 8.1 7.8

35%

4%

2%11%

15%

17%28%

73% 53%

ALL ITA

8.0 or over

7.5

6.0/6.5/7.0

5.5 or less

Don't knowPat

ien

ts 1

2-18

yea

rs

(666) (78)

(666) (78)

Almost half of young adults and three-fifths of parents/carers were satisfied with the medicines available for diabetes


67%

48%43%

52%

67%66%

58% 59%

73%

61%

ALL ITA Age 0-9 Age 10-14 Age 15+

Young adults

Parents/ Carers

Q15 (YA): Using a scale of 5-1, where 5 means very satisfied and 1 means very dissatisfied, how satisfied are you with…the medicines available for your diabetes? Q18 (PC) Using a scale of 5-1, where 5 means very satisfied and 1 means very dissatisfied, how satisfied are you with…the medicines available for your child’s diabetes?

% satisfied (4) or very satisfied (5)

(1905) (4099) (311) (147) (52) (174) (65) (111) (30) (24)Age of diabetes child/Age of young adult at diagnosis

Approximately half of young adults and three-fifths of parents/carers expressed satisfaction with equipment available for measuring blood sugar


70%

48%44%

50%

71%66%

62%

52%

62%

77%


Young adults

Parents/ Carers

Q15 (YA): Using a scale of 5-1, where 5 means very satisfied and 1 means very dissatisfied, how satisfied are you with…the equipment available for measuring blood sugar? Q18 (PC) Using a scale of 5-1, where 5 means very satisfied and 1 means very dissatisfied, how satisfied are you with…the equipment available for measuring blood sugar?


(1905) (4099) (311) (147) (52) (174) (65) (111) (30) (24)

Age of diabetes child/Age of young adult at diagnosis

About half of young adults and parents/carers were satisfied with devices available for diabetes


62%

48%44%

51%

71%

59%55%

50% 51%

73%


Young adults

Parents/ Carers


Q15 (YA): Using a scale of 5-1, where 5 means very satisfied and 1 means very dissatisfied, how satisfied are you with…the devices available for your child’s diabetes? Q18 (PC) Using a scale of 5-1, where 5 means very satisfied and 1 means very dissatisfied, how satisfied are you with…the devices available for your child’s diabetes?

(1905) (4099) (311) (147) (52) (174) (65) (111) (30) (24)

Age of diabetes child/Age of young adult at diagnosis

Less than half of young adults with diabetes considered their control of blood sugar compared to HCP recommendations to be successful, compared to just over three-fifths of parents/carers


47% 46%

54%

62%

ALL ITA

Young adults

Parents/ Carers

% stating successful (4) or very successful (5)

Q16 (YA): In terms of managing your diabetes, how successful do you think you are compared to what your healthcare professionals have recommended in the areas of…? Q19 (PC): In terms of managing your child’s diabetes, how successfully managed do you think your child’s diabetes is, compared to what the healthcare professionals recommend, in the areas of…?

(1905) (4099) (311) (147)

49%

70%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Controlling his/her blood sugar?

Two-thirds of HCPs reported that children/adolescents successfully control their blood sugars most, if not all of the time


(666) (78)

About three-fifths of young adults and four-fifths of parents/carers felt they/their children were successful in taking their medication as recommended by HCPs


73%

61%

77% 79%

ALL ITA

Young adults

Parents/ Carers



(1905) (4099) (311) (147)

73%

93%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Taking his/her medication as required?


Almost all the HCPs believed that children/adolescents were successful in taking their medication as required most of the time, if not all the time

(666) (78)

Monitoring blood sugar as part of recommended diabetes management was judged to be successful by half of young adults and nearly three-quarters of parents/carers


52%47%

44%47%

71%66%

72%75% 77%

56%


Young adults

Parents/ Carers



(1905)(4099) (311) (147) (52) (174) (65) (111) (30) (24)Age of diabetes child/Age of young adult at diagnosis

67%

82%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Monitoring his/her blood sugar?


Four-fifths of HCPs said children/adolescents successfully monitor their blood sugar most, if not all of the time

(666) (78)

Around half of young adults with diabetes and half of parents/carers thought they/their children were successful in eating the right amount of food to ensure good diabetes management


42%45%

65%

48%

26%

55%50%

44% 45%

63%


Young adults

Parents/ Carers




Two-fifths of young adults and three-fifths of parents/carers thought young adults’ diet management was successful in terms of eating the right type of food, based on HCP recommendations

Base: all young adults with diabetes; all parents/carers (not Japan)

41% 43% 42% 43%

63%

56%59%

67%

60%

43%


Young adults

Parents/ Carers




35%

55%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Eating healthily (avoiding too much fat and sugar)?


Just over a half of HCPs stated that all/almost all/most of their patients succeeded in eating healthily (avoiding too much fat and sugar)

(666) (78)

The biggest discrepancy in opinions of successful management of diabetes was evident for achieving an adequate level of exercise; less than two-fifths of young adults reported success compared to over three-fifths of parents/carers


36%39% 39% 37%

54%

63% 62%58%

65% 64%


Young adults

Parents/ Carers




30%

31%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Getting enough exercise?


Less than one-third of HCPs thought children/adolescents were successful getting enough exercise most, if not all of the time

(666) (78)

Two-fifths of young adults with diabetes thought they were successful in managing high and low blood sugars as recommended and nearly three fifths of their parents agreed


53%

38% 36% 37%

58%59% 59%53%

60%

67%


Young adults

Parents/ Carers




55% 53%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Managing high/low blood sugars?


More than half of HCPs reported that children/adolescents successfully manage high and low blood sugars most, if not all of the time

(666) (78)

Only a third of young adults, but two-thirds of parents/carers judged themselves/their child to be successful in coping with their diabetes in general


56%

36%33%

36%

59%56%

68%

57%

72%

80%


Young adults

Parents/ Carers




30%

23%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Coping emotionally with his/her diabetes?


Less than a quarter of HCPs thought children/adolescents were successful at coping emotionally with their diabetes most, if not all of the time

(666) (78)

40%

50%

ALL ITA

% of HCPs

% s

tati

ng

all

/alm

ost

all

/ m

ost

ch

ild

ren

/ ad

ole

scen

ts a

re

succ

ess

ful

Q3 (HCP): In your opinion, what proportion of the children/adolescents with diabetes who you see successfully achieves the following aspects of their diabetes management (with or without help from their family or others) … Managing his/her diabetes at school?


Half of HCPs estimated children/adolescents to be successful managing their diabetes at school most, if not all of the time

(666) (78)

Social/emotional/employment

issues (YA, PC)4iv

Almost all the young adults felt having diabetes caused them no or only some embarrassment

Q17 (YA): How often does having diabetes make you feel embarrassed?


Yo

un

g a

du

lts


1% 1%

83%93%

8%3%8% 4%

ALL (1905) I TA (311)

All / most ofthe time (4or 5)

Half thetime (3)

Never/ Sometimes (1 or2)

Don't know/depends

Scale: 1 (never) to 5 (all the time)

Almost all young adults felt discrimination against them because of their diabetes was never or only sometimes an issue

Q18 (YA): How often do you feel discriminated against because you have diabetes?


Yo

un

g a

du

lts


3% 1%

84%95%

6%2%7% 3%

ALL (1905) I TA (311)


Half thetime (3)


Don't know/depends


Almost all young adults said that their diabetes never or only sometimes limited their social relationships and friendships

Q19 (YA): How often does your diabetes limit your social relationships and friendships?


Yo

un

g a

du

lts


3%

85% 95%

7%3%5% 2%

ALL (1905) ITA (311)


Half thetime (3)


Don't know/depends


Three-quarters of young adults were not currently working; diabetes only had a major/moderate impact on work for 3%

Q20 (YA): How much impact does your diabetes have on your performance at work?


24%

74%24%

10%

32%

12%20%3%

ALL (1905) ITA (311)

Major / moderateimpact

Minor impact

No impact

Not currentlyworking

Yo

un

g a

du

lts

Almost half of parents/carers had their work disrupted to some extent by their child’s diabetes

Q45 (PC): How much has your child’s diabetes disrupted your work?


9%16%

17%

35%28%

22%

46%

25%

ALL (4099) ITA (147)

A lot / somewhat(3, 4)

A little (2)

Not at all (1)

Not applicable /don't know


Par

ents

/ C

arer

s

Scale: 1 (not at all) to 4 (a lot)

Almost three-quarters of young adults reported time missed from work because of their diabetes more than once per year

Q21 (YA): How often do you have to miss work because of your diabetes?

Base: all young adults with diabetes who are working (excluding don’t know/not stated)

Yo

un

g a

du

lts

46%

29%

37%

44%

17%28%

ALL (1243) ITA (66)

About once aweek or more /once every twoweeks / once amonth

Once every 2-3months / abouttwice a year

Once a year orless

Diabetes management/ HCP Involvement (YA, PC) 4v

The majority of young adults currently saw their diabetes nurse regularly for their diabetes

Q22 (YA): Which of the following professionals do you currently see regularly for your diabetes?


ALL (1905)

ITA (311)


Diabetes specialist 70% 22%


Dietician 18% 9%

Psychologist/counsellor 6% 5%

Pharmacist 21% 2%

Ophthalmologist 41% 1%

Most parents/carers said their child was currently seeing a diabetes specialist for his/her diabetes

Q29 (PC): Which of the following professionals does your child currently see for his/her diabetes?


Excludes country mentions < 6%

ALL (4099)

ITA (147)




Dietician 34% 34%


Pharmacist 12% 9%


Young adults believed the diabetes specialist provided the best support in helping to manage diabetes

Q23 (YA): Of the following professionals, which one provides you with the best support to help you manage your diabetes?

Base: all young adults with diabetes whosee several HCPs

ALL (1261)

ITA (50)

Diabetes specialist

53% 64%


Psychologist/counsellor

2% 8%

Dietician 4% 4%


Gynaecologist - 2%

Parents agreed with young adults that the diabetes specialist provided the best support in helping to manage their child’s diabetes

Q30 (PC): Of the following professionals, which one provides you and your child with the best support to help you manage his/her diabetes?

Base: all parents/carers who see several HCPs

ALL (3115)

ITA (93)



Psychologist/ counsellor

2% 2%


Pharmacist 1% 1%

GPs were not always available when needed for half of young adults and two-thirds of parents/carers

Q24 (YA): At times when you need them, how available to you are each of the following professionals? Q31 (PC): At times when you need them, how available to you and your child are each of the following professionals?

Base: all young adults with diabetes who see several HCPs including a GP/family doctor; all parents/carers who see several HCPs including a GP/family doctor

6% 4%

13% 21%

39% 25%

41%50%

ALL ITA

Always available(5)

Often available(4)

Sometimesavailable (3)

Rarely / neveravailable (1, 2)


Yo

un

g a

du

lts


Par

ents

/ C

arer

s

3% 3%9% 7%

32%22%

55%67%

ALL ITA

Always available(5)

Often available(4)


Rarely / neveravailable (1,2)

Base: 417 24

Base: 1136 67

Scale: 1 (never available when needed) to 5 (always available when needed)

Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) .. General Practitioner (GP)/Primary Care Physician (PCP)/Family Practitioner (FP)?


Just under one-fifth of HCPs reported that children/ adolescents see General Practitioners at least every 3 months

48% 45%

8%

10% 14%

14%13%

21% 18%

10%

ALL ITA

At least every 3months

Every 3-6months

Every 6-12months

Once a year orless often

Don't know/notapplicable

Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Diabetes specialists were not always available when needed according to two-thirds of young adults, and three-quarters of parents/carers


Base: all young adults with diabetes who see several HCPs including a diabetes specialist; all parents/carers who see several HCPs including a diabetes specialist

8%

19%

8%

33%

22%

39%

70%

ALL ITA

Always available(5)

Often available(4)




Yo

un

g a

du

lts


Par

ents

/ C

arer

s

3% 1%

12%6%

29%

14%

55%

78%

ALL ITA

Always available(5)

Often available(4)



Base: 1052 37

Base: 2876 93


Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) .. Diabetes specialist?


Three-quarters of HCPs stated that children/adolescents see a Diabetes Specialist at least every 3 months

6% 3%2%7%

1%

29%

23%

56%

73%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Diabetes nurses were not always available when needed according to more than half of young adults and two-thirds of parents/carers


Base: all young adults with diabetes who see several HCPs including a diabetes nurse; all parents/carers who see several HCPs including a diabetes nurse

3%12% 13%

38%32%

46%55%

ALL ITA

Always available(5)

Often available(4)




Base: 640 31

Yo

un

g a

du

lts


Base: 1879 35

Par

ents

/ C

arer

s

1% 6%9%11%

34%11%

54%

71%

ALL ITA

Always available(5)

Often available(4)




Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) .. Diabetes nurse?


Two-thirds of HCPs said that children/adolescents see a Diabetes Nurse at least every 3 months

14%4%

6%

9%

4%

20%

23%

52%

69%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Half of young adults and two-fifths of parents/ carers claimed dieticians were not always available when needed


Base: all young adults with diabetes who see several HCPs including a dietician; all parents/carers who see several HCPs including a dietician

7%

20%

12%

44%

38%

28%

50%

ALL ITA

Always available(5)

Often available(4)




Base: 342 26

Yo

un

g a

du

lts


Base: 1387 50

Par

ents

/ C

arer

s

5% 10%

19%18%

41% 34%

33% 38%

ALL ITA

Always available(5)

Often available(4)




Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) .. Dietician?


One tenth of HCPs said that children/adolescents see a Dietician at least every three months

15% 14%

21%

24%29%

23%21%

16% 12%

24%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Almost half of young adults and two-fifths of parents/ carers claimed psychologists/counsellors were not always available when needed


Base: all young adults with diabetes who see several HCPs including a psychologist/counsellor; all parents/carers who see several HCPs including a psychologist/counsellor

7%

17%

7%

36%

40%

40%53%

ALL ITA

Always available(5)

Often available(4)




Base: 112 15

Yo

un

g a

du

lts


Base: 465 23

Par

ents

/ C

arer

s

6%

22%

17%

33%

22%

37%

61%

ALL ITA

Always available(5)

Often available(4)




A third of HCPs said children/adolescents saw a psychologist/counsellor once a year or less often

Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) .. Psychologist/Counsellor?


45% 40%

34%

8%13%

5% 12%8% 3%

33%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Three-fifths of young adults and one third of parents/carers found that pharmacists were not always available when needed


Base: all young adults with diabetes who see several HCPs including a pharmacist; all parents/carers who see several HCPs including a pharmacist

3%13% 20%

34%40%

49%40%

ALL ITA

Always available(5)

Often available(4)




Base: 394 5

Yo

un

g a

du

lts


Base: 492 13

Par

ents

/ C

arer

s

3%8%

8%

40%

23%

43%

69%

ALL ITA

Always available(5)

Often available(4)




Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) ..Pharmacist?


Most HCPs did not know the frequency with which children/adolescents saw a Pharmacist over the course of a year

73% 70%

6%2%5% 9%

14% 10%

10%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

The vast majority of young adults and parents/carers found that ophthalmologists were not always available when needed


Base: all young adults with diabetes who see several HCPs including an ophthalmologist; all parents/carers who see several HCPs including an ophthalmologist

12%

27%

33%

35%

67%

25%

ALL ITA

Always available(5)

Often available(4)




Base: 785 3

Yo

un

g a

du

lts


Base: 1329 9

Par

ents

/ C

arer

s

9% 11%

24%33%

33%

44%

26%

11%

ALL ITA

Always available(5)

Often available(4)




Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) ..Ophthalmologist/eye specialist?


Just over half of HCPs noted that children/adolescents saw an Ophthalmologist/eye specialist once a year or less

18%27%

63%

17%15%

2%1% 1%

56%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Ninety percent of young adults and parents/carers saw their preferred healthcare professional all or most of the time

Q25 (YA): When you visit the doctor or another healthcare professional in your diabetes team, how often is it the person you prefer to see? Q33 (PC): When you see a doctor for your child’s diabetes, how often is it the person you prefer to see?

Base: all young adults with diabetes; all parents/carers who currentlyAccompany their child routinely to doctor for visits about diabetes

18%9%

37% 59%

40%30%

ALL ITA

All the time (5)

Most of the time(4)

Half thetime/sometimes /never (1, 2, 3)


Yo

un

g a

du

lts


Par

ents

/ C

arer

s

11% 9%

29% 40%

58%50%

ALL ITA

All the time (5)

Most of the time(4)

Half the time/sometimes /never (1, 2, 3)


Base: 3886 139

Base: 1905 311

When they turned 18, the vast majority of young adults did not change the doctor who treated their diabetes

Q26 (YA): When you turned 18, did you change the doctor who treats your diabetes?

Base: all young adults with diabetes (excludes don’t know)

Yo

un

g a

du

lts

48%

13%

52%

87%

ALL (1673) ITA (300)

No - still thesame doctor

Yes - it's adifferent doctor

According to half of young adults (50%) and the majority of parents (87%), the doctor who treated them/their child when they were younger treated mostly children/adolescents

Q27 (YA): Did the doctor who treated you when you were a child/adolescent treat mostly children/adolescents, mostly adults, or both? Q39 (PC): When your child was younger, did his/her doctor treat mostly children/adolescents, mostly adults, or both children/adolescents and adults?

Base: all young adults with diabetes whose doctor is different; all parents/carers whosechild’s doctor is different

Base: 809 38

Yo

un

g a

du

lts

Base: 1505 31

Par

ents

/ C

arer

s

5%5% 3%

12%6%

78%87%

3%ALL ITA

Mostly children /adolescents

Both children /adolescents andadults

Mostly adults

Don't know

7%8%

3%

19%45%

66%50%

3%ALL ITA



Mostly adults

Don't know

According to four-fifths of parents/carers their child’s current doctor treated mostly children/adolescents; according to half of young adults their current doctor treated both children/adolescents and adults

Q29 (YA): Does the doctor(s) you mainly see now for your diabetes treat mostly children/adolescents, mostly adults or both?

Q41 (PC): Does your child’s current doctor treating his/her diabetes treat mostly children, both children and adults, or mostly adults?

Base: all young adults with diabetes whose doctor is different; all parents/carers whosechild’s doctor is different

Yo

un

g a

du

lts

Par

ents

/ C

arer

s

5%9% 10%

20%6%

66%81%

3%ALL ITA



Mostly adults

Don't know

9%

56%

37%

31%

53%

5% 8%

3%ALL ITA



Mostly adults

Don't know

Base 809 38

Base: 1505 31

Over a half of young adults believed the care they received from their current diabetes doctor was much or a little better than that offered by their previous diabetes doctor

Q30 (YA): How would you compare the care you receive now from your diabetes doctors to that you received from the diabetes doctors who treated you previously when you were child/adolescent?

Base: all young adults with diabetes whose doctor is different

Base: 809 38

6%

22%

8%

29%

18%

43%

71%

3%ALL ITA

Current care formy diabetesmuch / a littlebetter

Current andprevious care formy diabetes areabout the same

Previous care formy diabetesmuch / a littlebetter

Don't know

About half of parents/carers thought the care their child receives from his/her current diabetes doctor is much or a little better than that received from his/her previous doctor

Q42 (PC): How would you compare the care your child receives now from his/her diabetes doctor to that he/she received from the doctors who treated him/her when she/he was younger?

Base: all parents/carers whose child’s doctor is different

8%

12%

13%

30% 19%

49% 52%

16%

ALL ITA

Current doctormuch / a littlebetter

Current and pastdoctors areabout the same

Past doctormuch / a littlebetter

Don't know

Base: 1505 31

More than half of young adults and two-thirds of parents/carers reported that all the people involved in their/their child’s treatment talked to each other about their/their child’s diabetes management

64% 65%

ALL ITA

44%

56%

ALL ITA

% Who talk to each other

Yo

un

g a

du

lts

Par

ents

/ C

arer

s

Base: all young adults with diabetes who see several HCPs; all parents/carers who see several HCPs Q31 (YA): As far as you know, do you think all the people who are now

involved in your treatment talk with each other about your diabetes management, or does each of them work independently on your case? Q34 (PC): As far as you know, do you think all the people who are now involved in your child’s treatment/care talk with each other about his/her diabetes management, or do you think that each of them works independently on your child’s case?

Base: 1261 50

Base: 3115 93

Almost three-fifths of parents/carers felt their child’s doctor/diabetes team understood the daily challenges their child and family faced very well, while over half of young adults agreed

Q32 (YA): How well does your doctor or professionals in your diabetes team understand the daily challenges (difficulties) you have, taking care of your diabetes? Q35 (PC): How well do your child’s doctor and other professionals in your child’s diabetes team understand the daily challenges and difficulties you, your child and the rest of your family face, with respect to taking care of your child’s diabetes?


Yo

un

g a

du

lts

Par

ents

/ C

arer

s

3%10% 10%

40%29%

47%59%

1%ALL (4099) ITA (147)

Understandthem very well

Understandthem moderatelywell

Do notunderstand themvery well / at all


7%

18%

7%

41%

38%

33%

54%

2%ALL (1905) ITA (311)

Understandthem very well

Understandthem moderatelywell

Do notunderstand themvery well / at all


Two-thirds of parents/carers and over half of young adults have a lot of involvement in decisions about how to treat their/their child’s diabetes

Q33 (YA): How involved are you in decisions about how to treat your diabetes?

Q37 (PC): How involved are you in decisions about how to treat your child’s diabetes?


Yo

un

g a

du

lts

Par

ents

/ C

arer

s

25% 32%15%

34%

57%

74% 68%85%

66%

43%

ALL (4099) ITA (147) Child aged 0-9 (52)

Child aged10-14 (65)

Child aged15+ (30)

A lot

Somewhat / alittle / not at all

36%46% 49% 44%

33%

64%54% 51% 56%

67%

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14 atdx (111)

Aged 15+ atdx (24)

A lot

Somewhat / alittle / not at all

One tenth of young adults and almost one third of parents/carers felt diabetes had a major or moderate positive impact on siblings

Q34 (YA): What impact has your diabetes had on your brother(s)/sister(s)?

Q49 (PC): What impact has your child’s diabetes had on his/her brother(s)/sister(s)?

Base: all young adults with diabetes who have siblings; all parents/carers whose child has siblings

Base: 1678 221

Yo

un

g a

du

lts

Base: 3302 95

Par

ents

/ C

arer

s

9%

37%27%

25%34%

30% 30%

8%

ALL ITA

A major /moderatepositive impact

No impact

A major /moderatenegative impact


19%

15%

6%

45%80%

23%11%

3%ALL ITA

A major /moderatepositive impact

No impact

A major /moderatenegative impact


Scale: 1 (major negative impact) to 5 (major positive impact)



Expense of managing diabetes/

financial impact (YA, PC) 4vi

All three groups thought it easy to obtain a glucose meter and supplies

Q35 (YA): How easy for you is it to obtain each of the following…? Q50 (PC): How easy is it for you to obtain each of the following for

your child’s diabetes…?

Base: all young adults with diabetes; all parents/carers; all healthcare professionals

3.1 3.2

3.6 3.53.7

3.9

ALL ITA

YoungadultsParents/CarersHCPs

4 – Very easy

1 – Very difficult Scale of 1 to 4,

where 1=very difficult and 4=very easy

Q21 (HCP): How easy is it for the children/adolescents with diabetes (or their parents/carers) under your care to obtain

the following…?

(1905) (4099) (311) (147)(666) (78)

All three groups thought it easy to obtain a sufficient amount of insulin




3.13.3

3.7 3.73.84

ALL ITA


4 – Very easy




the following…?

(1905) (4099) (311) (147)(666) (78)

The three groups agreed it was easy to obtain the latest fast-acting or long-acting insulins available




33.2

3.5 3.63.4

3.9

ALL ITA


4 – Very easy




the following…?

(1905) (4099) (311) (147)(666) (78)

Unlike other medicines/devices for managing diabetes, insulin pumps were not as easy to obtain according to all three groups



Base: all young padults with diabetes; all parents/carers; all healthcare professionals

2.5

3.1

2.7

3.2

2.6

3.2

ALL ITA


4 – Very easy




the following…?

(1905) (4099) (311) (147)(666) (78)

There was consensus amongst the three groups that it was easy to obtain insulin pens




3.1 3.2

3.5 3.53.5

4

ALL ITA


4 – Very easy

1 – Very difficult

Scale of 1 to 4, where 1=very difficult and 4=very easy


the following…?

(1905) (4099) (311) (147)(666) (78)

Nearly a fifth of young adults and a third of parents/carers had found their/their child’s diabetes had caused a moderate/major impact in terms of financial burden

Q37 (YA): How much of a financial burden has your diabetes been for your family (parent(s)/guardian(s))?

Q44 (PC): How much of a financial burden has your child’s diabetes been for your family?


Yo

un

g a

du

lts

Par

ents

/ C

arer

s

1% 1%

48%

66%

50%

33%

ALL (4099) ITA (147)

Major / moderateburden

Minor / noburden

Don't know

5% 8%

48%

75%

47%

18%

ALL (1905) ITA (311)

Major / moderateburden

Minor / noburden

Don't know

About one fifth of young adults and one quarter of parents/carers claimed their family financial situation had limited ability to care for their/their child’s diabetes

Q38 (YA): How much has your (or your family’s) financial situation limited your ability to take care of your diabetes?

Q46 (PC): To what extent has your financial situation limited your ability to take care of your child’s diabetes?


Yo

un

g a

du

lts

Par

ents

/ C

arer

s

2% 1%

66% 72%

33% 27%

ALL (4099) ITA (147)

A lot / somewhat/ a little

Not at all

Don't know

13% 11%

45%

72%

42%

16%

ALL (1905) ITA (147)

A lot / somewhat/ a little

Not at all

Don't know / notapplicable

Education/school issues

(YA, PC)4vii

School friends and teachers were the two groups at school that young adults were most likely to inform that they had diabetes

Q46 (YA): At school, who knows (who knew when you were in secondary school) you had diabetes?

Base: all young adults with diabetes who are in/were in secondary education

ALL (1637)

ITA (309)

School friends 76% 87%

Class teacher 54% 78%

Other teachers 57% 73%

Office staff 16% 34%

School/head teacher 27% 18%

Other 11% 10%

Canteen staff/ staff who prepared food

9% 6%

School nurse/ health worker

14% 2%

No one 6% 2%

DK/can’t remember 9% 7%

More than two-thirds of young adults reported that all or most of their school friends knew they had diabetes

Q48 (YA): How many of your school friends know you have diabetes?

Base: all young adults with diabetes who are in secondary school

Base: 484 38

Yo

un

g a

du

lts

2%3%

24% 31%

71% 69%

ALL ITA

All / most

Some / few

None

Don't know

The majority of young adults said their teachers do/did not treat them better than others because of their diabetes

Q49 (YA): How often do/did your teachers (used to) treat you better than others (back in secondary school) because of your diabetes?

Base: all young adults with diabetes who are/did go to secondary education

Base: 1637 309

Yo

un

g a

du

lts

12%

65%

61%

22%34%

1%

5%

ALL ITA

All the time (5)

Most / half thetime / sometimes(4,3,2)

Never (1)

Don't know

Mean: 1.4 1.5Scale: 1 (never) to 5 (all the time)

The vast majority of young adults said their teachers do/did not treat them less well than others because of their diabetes

Q50 (YA): How often do/did your teachers (used to) treat you less well than others (back in secondary school) because of your diabetes?

Base: all young adults with diabetes who are/did go to secondary education

Yo

un

g a

du

lts

12%

76% 91%

10% 4%1% 1%

4%

ALL ITA

All the time (5)


Never (1)

Don't know


Base: 1637 309

The majority of young adults claimed their friends did not treat them better than others because of their diabetes

Q51 (YA): How often do/did your friends (used to) treat you better than others (back in secondary school) because of your diabetes?


Yo

un

g a

du

lts

11%

66%73%

22% 24%

1% 1%

2%ALL ITA

All the time (5)


Never (1)

Don't know


Base: 1637 309

The majority of young adults claimed their friends did not treat them less well than others because of their diabetes

Q52 (YA): How often do/did your friends (used to) treat you less well than others (back in secondary school) because of your diabetes?


Yo

un

g a

du

lts

11%

73% 86%

14% 11%1%

2%ALL ITA

All the time (5)


Never (1)

Don't know


Base: 1637 309

Young adults thought teachers who were better informed on how to deal with emergency diabetes situations would benefit young adults with diabetes at school

Q54 (YA): What type of additional help do you think schools should be able to provide for young adults with diabetes?


ALL (1905)

ITA (311)

Teachers who are better informed on how to deal with an emergency diabetes situation

68% 65%

A school nurse on site 33% 38%

Teachers who are better informed about diabetes 58% 32%

Glucagon made readily available at school as well as someone properly trained to administer it

45% 28%

Healthy food and drink options 55% 27%

Juices and glucose sources made readily available 43% 26%

School friends who are better informed about diabetes 35% 24%

Nutritional information about food served at school 43% 17%

Excludes overall mentions <6%

The majority of parents/carers thought better informed teachers (in terms of managing emergency situations and diabetes in general) would benefit young adults with diabetes at school

Q27 (PC): What type of additional help do you think schools should be able to provide for young adults with diabetes who are around the same age as your child?


ALL (4099)

ITA (147)

Teachers who are better informed on how to deal with an emergency diabetes situation

75% 80%

Teachers who are better informed about diabetes 73% 65%

Glucagon made readily available at school as well as someone properly trained to administer it

53% 47%

Juices and glucose sources made readily available 43% 37%

Healthy food and drink options 52% 35%

School friends who are better informed about diabetes

37% 33%

A school nurse on site 37% 29%

Nutritional information about food served at school 45% 28%

Excludes country mentions of 1%

One quarter of parents/carers and one eighth of young adults said that their child’s/their diabetes had a major or moderate impact on their performance at school

Q24 (PC): How much of an impact do you think your child’s diabetes has on his/her performance at school? Q44 (YA): How much impact does your diabetes have on your performance at school?

Base: All parents/carers whose child receives education at school; all young adults with diabetes who are still currently in secondary school

4%

23%

47%

43%

39%

31%13%

ALL I TA

Major/ moderate impact

Minorimpact

No impact

Don'tknow/ notstated

Par

ents

/ C

arer

sY

ou

ng

ad

ult

s

Base: 484 38

Base: 3299 126

5% 7%

27%

40%

28%

29%

39%

24%

ALL I TA


Minorimpact

No impact


Two-thirds of young adults had missed out on school activities some or half the time because of their diabetes; almost half of parents/ carers confirmed this finding

Mean rating: 1.8 2.2 2.3 2.3 1.7

Base: 1637 309 173 110 24

Yo

un

g a

du

lts

Mean rating: 1.7 1.7 1.9 1.7 1.6

Base: 3299 126 38 62 26

Par

ents

/ C

arer

s

Base: all parents/carers whose child receives education at school; all young adultswith diabetes who are/did go to secondary school

Scale: 1 (never) to 5 (all of the time)

Q45 (YA): How often does/did your diabetes prevent you from participating in school activities? Q25 (PC): How often does your child’s diabetes prevent him/her from participating in school activities (such as outings, sport activities etc…)?

6% 1% 1% 1%

47%

18% 17% 15%

42%

40%

71% 71% 75%

58%

7% 9% 11% 10%

ALL I TA aged 0-9 at dx aged 10-14 at dx aged 15+ at dx

All/ most ofthe time(4,5)

Half thetime/ sometimes (2, 3)

Never (1)


2% 2% 8%

54%45% 32% 53%

46%

37%47% 58%

40% 50%

7% 4%3%

6% 4%

ALL I TA Child aged 0-9 Child aged 10-14 Child aged 15+

Most of thetime/ halfthe time(4,5)Half thetime/ Sometimes (2, 3)

Never (1)


School friends and class teachers were the two groups at school that young adults were most likely to rely on if they required help managing their diabetes at school

Base: all young adults with diabetes who are in/were in secondary education

ALL (484)

ITA (38)


Class teachers 21% 34%

Other teacher 26% 11%


12% 3%

Office staff 4% 3%

No one 16% 18%

DK/Can’t remember 12% 24%

Q47 (YA): If you need help with managing your diabetes at school, who would be able to help you?

Class teachers were the group at school that the majority of parents/carers thought their children were most likely to rely on if they required help managing their diabetes at school

Base: all parents/carers with children in school receiving education

ALL (3299)

ITA (126)

Class teachers 57% 67%


Other teacher 32% 31%

School teacher/

Head teacher20% 10%

Canteen staff/staff who prepare food

7% 7%


28% 6%

Office staff 12% 6%

No one 8% 10%


Q26 (PC): Do you know who your child can rely on when requiring help to manage his/her diabetes at school?

Excludes country mentions <4%

The home room teacher was the person that HCPs felt children/adolescents were most likely to rely on if they required help managing their diabetes at school

ALL (666)

ITA (78)

Home room teacher 75% 63%


School nurse/ health worker 33% 29%

Other teachers 30% 18%

School principal/Vice-principal 19% 19%

Cafeteria staff/staff who prepare food

15% 15%

Bus driver 6% 4%

Office staff 13% 3%

Other 12% 14%

No one 4% 8%


Q20 (HCP): To your knowledge, who can the children and adolescents with diabetes you see rely on when requiring help to manage their diabetes at school?


Three-quarters of young people missed school due to diabetes more than once a year

35%26%

45% 58%

21% 17%

ALL ITA

Once a month /once every twoweeks / aboutonce a week ormore

Twice a year /once every 2-3months

Once a year orless

Base: 484 35

Yo

un

g p

eop

le

Base: all young people with diabetes who are still attending secondary school (excluding don’t know/not stated)

Q53 (YP): How often do you have to miss school because of your diabetes?

Almost half of parents/carers said their child sometimes had to miss school because of their diabetes

1% 1%

45% 51%

52%47%

3% 1%

ALL ITA

All / most / halfthe time (3,4 or 5)

Sometimes (2)

Never (1)

Don't know

Base: 3132 102

Par

ents

/ C

arer

s


Base: all parents/carers whose child receives education in a non-boarding school

Q28 (PC): How often does your child have to miss school, because of his/her diabetes?


Support from family, friends, school, community

in managing diabetes

(YA, PC)4viii

Young adults believed their parents/guardians were very supportive in terms of their diabetes

Q55 (YA): How supportive of your diabetes do you consider the following people to be?


Scale: 1 (not at all supportive) to 4 (very supportive)

3.53.7

ALL (1905) ITA (311)

Mean scores

1 – not at all supportive

4 – very supportive

Young adults judged their spouses/partners to be very supportive in terms of their diabetes




3.5 3.6

ALL (1905) ITA (311)

Mean scores



Overall, young adults thought their siblings were supportive of their diabetes



3.1

3.5

ALL ITA

Mean scores



Base: 1678 221

Base: all young adults with diabetes who have siblings

In comparison, young adults did not consider their schools to be as supportive about their diabetes as their families




2.3 2.3

ALL ITA

Mean scores



Base: 484 38

Classmates were considered more supportive than schools by young adults regarding their diabetes, but less supportive than families



2.7 2.8

ALL ITA

Mean scores



Base: 484 38


Young adults found their friends, in general, to be supportive of their diabetes




3.13.4 3.4 3.5

3.7

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14at dx (111)

Aged 15+ atdx (24)

Mean scores



Young adults considered local communities to be fairly supportive about their diabetes, but less supportive than families




2.4 2.5 2.5 2.5

2.9

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14at dx (111)

Aged 15+ atdx (24)

Mean scores



Young adults rated society in general as less supportive about their diabetes than other groups such as family and friends




2.3 2.3 2.3 2.3

2.7

ALL (1905) ITA (311) Aged 0-9 atdx (174)

Aged 10-14at dx (111)

Aged 15+ atdx (24)

Mean scores



Value of/opinions on diabetes-related activities (YA/PC) 4ix

Only one fifth of young adults had not been involved in diabetes-related youth activities

Q56 (YA): Which of the following activities have you been involved in…?


ALL (1905)

ITA (311)

Aged 0-9 at dx (174)

Aged 10-14 at dx (111)

Aged 15+ at dx (24)

A youth camp specifically for children/young adults with diabetes

44% 77% 82% 76% 42%

Internet chat groups networks and activities for youth with diabetes

30% 18% 18% 20% 13%

Local events activities and networks for young adults with diabetes

24% 14% 12% 16% 17%

A youth camp for families with diabetes (both parents and children)

10% 6% 7% 5% 4%

Percent who had not been involved in any of the above

30% 18% 16% 15% 50%

One third of parents/carers had not been involved in diabetes-related activities

Q52 (PC): Which of the following activities have you been involved in…?


ALL (4099)

ITA (147)

Child aged 0-9 (52)

Child aged 10-14 (65)

Child aged 15+ (30)

Local events activities and networks for young adults with diabetes

44% 50% 48% 48% 57%

A youth camp specifically for children/young adults with diabetes

25% 31% 25% 37% 27%

Internet chap groups networks and activities for youth with diabetes

29% 16% 12% 15% 27%

A youth camp for families with diabetes (both parents and children)

17% 16% 19% 12% 20%

Percent who had not been involved in any of the above

30% 34% 40% 31% 30%

Young adults and parents/ carers felt youth camps for children with diabetes had been very helpful

Q57 (YA): To what extent has this activity helped you?Q53 (PC): To what extent has this activity helped you?

Base: all young adults with diabetes who are involved in this activity; all parents/carers who are involved in this activity

Scale: 1 (not at all) to 4 (a great deal)

3.4 3.43.5

3.8

ALL ITA

Youngadults

Parents /carers

Mean scores

1 – not at all

4 – a great deal

Base (YA): 838 239

Base (PC): 1045 45

Young adults and parents/ carers felt youth camps for families of children with diabetes had been very helpful




3.2

3.53.5

3.8

ALL ITA

Youngadults

Parents /carers

Mean scores

1 – not at all

4 – a great deal

Base (YA): 189 20

Base (PC): 694 24

Internet chat groups were also judged to be helpful by both young adults and parents/carers




3.2

3.7

3.3 3.3

ALL ITA

Youngadults

Parents /carers

Mean scores

1 – not at all

4 – a great deal

Base (YA): 580 56

Base (PC): 1187 24

Overall young adults and parents/carers claimed local activities had been helpful




3.1

3.43.2

3.4

ALL ITA

Youngadults

Parents /carers

Mean scores

1 – not at all

4 – a great deal

Base (YA): 459 43

Base (PC): 1794 73

About one seventh of young adults and one fifth of parents/carers were actively involved in organising activities around diabetes in their communities

Q58 (YA): Are you actively involved in organising activities around diabetes in your community?

Q54 (PC): Are you actively involved in organising activities around diabetes in your community?


19%

14%

22%20%

ALL ITA

Young adults

Parents /carers

% saying Yes

Base (YA): 1905 311

Base (PC): 4099 147

One quarter of young adults not currently involved would be interested in getting involved in organising activities around diabetes

Q59 (YA): How interested would you be in getting involved in organizing activities around diabetes in your community?

Base: all young adults with diabetes who are not involved in organising activities around diabetes

Base: 1544 268

Yo

un

g a

du

lts

8% 3%

44%69%

46%

28%

ALL ITA

Very / fairlyinterested

Not very / not atall interested

Don't know / notsure

Information sources on diabetes

(YA, PC)4x

The diabetes medical team was the most frequently named sources of information about diabetes for young adults

Q60 (YA): Where do you get your information about diabetes nowadays?


ALL (1905)

ITA (311)

Diabetes medical team 66% 92%

Other people with diabetes 36% 48%

Special diabetes internet websites 52% 45%

Libraries/books 17% 26%

Diabetes associations 47% 23%

Family 25% 15%

General diabetes meetings 12% 8%

General internet websites 32% 7%

Television/radio 21% 7%

Specialist diabetes classes/training courses 14% 7%

Diabetes camps 15% 6%

Friends 12% 5%

Excludes country answers less than 5%

Diabetes specialists, diabetes internet websites and diabetes associations were the three top information sources on diabetes for parents/carers

Q55 (PC): Where do you get your information about diabetes nowadays?


ALL (4099)

ITA (147)

Diabetologists/diabetes specialists

75% 80%

Specialist diabetes internet websites

58% 64%

Diabetes associations 56% 59%

Other parents of people with diabetes

39% 44%

Diabetes associations websites

45% 43%


Other people with diabetes

24% 28%

Dietician 27% 23%

Diabetes camps 16% 22%

Television/radio 23% 20%

Libraries/books 22% 16%

General diabetes meetings

16% 16%


General internet websites

27% 14%


Areas for improvement

in diabetes care (YA, PC)4xi

Two top areas for improvement identified by young adults pertained to easier monitoring of blood sugars and improved public knowledge of diabetes

Q61 (YA): Which of the following areas would you most like to see improvements? Please choose up to 3 items where you would most like to see a change.


ALL (1905)

ITA (311)

Better/easier ways to monitor blood sugars 34% 59%

Improved public awareness and knowledge of diabetes 46% 47%

Better educational materials for young adults with diabetes

14% 31%

Better/more convenient treatment methods 30% 28%

Easier access to nutritional information 16% 28%

Easier availability of better types of food 21% 27%

Better understanding of personal needs from HCPs 14% 17%

Better financial diabetes support from insurance or government

44% 15%

More diabetes-related activities/ initiatives/ diabetes associations

13% 9%

More education for my parents and family 7% 8%

Less discrimination due to diabetes 12% 6%

Less impact on choice of career 13% 5%

Easier access to diabetes medicines 15% 4%

Activities about diabetes at school 8% 4%

Similar to young adults, the two key areas for improvement selected by parents/carers pertained to public awareness/knowledge of diabetes and easier blood sugar monitoring

Q56 (PC): Which of the following areas would you most like to see improvements which could help you and your child better manage his/her diabetes? Please choose up to 3 items where you would most like to see a change.


ALL (4099)

ITA (147)

Improved public awareness and knowledge of diabetes

55% 64%

Better/easier ways to monitor blood sugars

52% 59%

Better information/ training for people with diabetes

16% 28%

Better/more convenient treatment methods

44% 27%

More diabetes-related activities/ initiatives/ diabetes associations

15% 25%

Better financial diabetes support from insurance or government

40% 21%

Less discrimination due to diabetes 18% 18%

Easier availability of better types of food 16% 12%

Less impact on choice of career 13% 10%

Easier access to nutritional information 15% 7%

Easier access to diabetes medicines 9% 6%

Perceptions of living with

diabetes in future (YA, PC)4xii

Optimism was expressed by both young adults and parents/carers with regard to living with their/their child’s diabetes in future

Q62 (YA): Using a scale of 5-1, where 5 means very optimistic and 1 means very pessimistic, how optimistic are you about your future in terms of…? Q57 (PC): Using a scale of 5-1, where 5 means very optimistic and 1 means very pessimistic, how optimistic are you about your child’s future in terms of…?


3.5 3.4 3.3 3.43.73.6

3.4 3.3 3.43.7


Young adults

Parents /carers

1 – very pessimistic

5 – very optimistic

Scale: 1 (very pessimistic) to 5 (very optimistic)

(1905)(4099) (311) (147) (52) (174) (65) (111) (30) (24) Age of diabetes child/Age of young adult at diagnosis

Overall, a similar level of optimism to that evident for living with diabetes in general was expressed by both groups regarding future work/work prospects



3.73.53.5 3.5

ALL ITA

Young adults

Parents /carers




(1905) (4099) (311) (147)

Young adults and parents/carers were generally optimistic about their/their child’s health in future



3.3 3.3 3.3 3.33.6

3.3 3.43.2

3.43.6


Young adults

Parents /carers




(1905)(4099) (311) (147) (52) (174) (65) (111) (30) (24) Age of diabetes child/Age of young adult at diagnosis

Young adults and parents/carers were optimistic about friendships/relationships in future



4.03.83.9 3.9

ALL ITA

Young adults

Parents /carers




(1905) (4099) (311) (147)

The future regarding family life was viewed optimistically by both young adults and parents/carers



3.8 3.73.7 3.8

ALL ITA

Young adults

Parents /carers




(1905) (4099) (311) (147)

Optimism was evident for both groups regarding financial well-being in future



3.5 3.43.5 3.6

ALL ITA

Young adults

Parents /carers




(1905) (4099) (311) (147)

Parents/carers analysis5

The vast majority of parent/carer respondents were parents/stepparents


Q1 (PC): You indicated that you look after a child/young person with diabetes, as a parent or an official guardian. Please tick below your relationship to that person…

1%1% 1%1% 1%

97% 98%

ALL ITA

Parent / step-parent

Grandparent

Sibling

Other familymember

Other type ofguardian

Par

ents

/ C

arer

s

(4099) (147)

Over two-thirds of parents/carers frequently worried about their child having low blood sugars (half the time or more)


Q6 (PC): How often do you worry about your child having low blood sugars?

1% 1%

36%29%

63%70%

ALL ITA

Half/ most/ all thetime

Sometimes

Never

Par

ents

/ C

arer

s

Mean: 3.3 3.6

(4099) (147)

Seven in ten parents/carers frequently worried about their child having long term health problems as a result of diabetes (half the time or more)


Q7 (PC): How often do you worry about your child having long-term health problems as a result of his/her diabetes?

1% 1%

28% 30%

71% 69%

ALL ITA


Sometimes

Never

Mean: 3.7 3.7

Par

ents

/ C

arer

s

(4099) (147)

Three-fifths of parents/carers feel overwhelmed by their child’s diabetes at least sometimes


Q8 (PC): How often do you feel that taking care of your child’s diabetes is overwhelming?

18%

39%

43%

41%

38%

20%

ALL ITA


Sometimes

Never

Mean: 2.5 2.0

Par

ents

/ C

arer

s

(4099) (147)

Four-fifths of parents/carers talk to family members when having difficulties caring for their child with diabetes, while only about one third talk to a diabetes doctor

Q9 (PC): At times when you’re feeling frustrated or finding it difficult to care for your child with diabetes, who can you talk to about your feelings? Please check all that apply.


ALL (4099)

ITA (147)

My family 74% 80%

My friends 39% 41%

Diabetes doctor 32% 34%

Friends who also have children with diabetes

27% 29%

Members at the diabetes association

11% 20%


Psychologist/ counsellor 8% 9%


Dietician 6% 2%


For half of parents/carers it was very important to talk to other people with children who had diabetes

Q10 (PC): How important is it for you to talk to other people with children who have diabetes?


24%12%

33%

39%

42%50%

ALL ITA

Very important(5)

Fairly important(4)

Neitherimportant norunimportant / notvery important /not at allimportant (3,2,1)

Mean: 4.1 4.4

Scale: 1 (not at all important) to 5 (very important)

(4099) (147)

Two-fifths of parents/carers said they were satisfied or very satisfied with the support that, they, as parents/carers received from school


Par

ents

/ C

arer

s

Q12b (PC): How satisfied are you with …. the support that you, as a parent, receive from school?



5% 3%

20% 26%

23%30%

51%41%

ALL ITA

Satisfied/ verysatisfied

Neither / Nor

Disatisfied/ verydissatisfied

Don't know/ notstated

(4099) (147)

Three-quarters of parents said their families had clear agreement on responsibility for all or most aspects of their child’s diabetes care

2%5% 7%

22% 17%

72% 76%

ALL ITA

All/most

Some/few

None

Don't know

Par

ents

/ C

arer

s


Q20 (PC): For how many aspects of diabetes care does your family have clear agreement or rules about who does what

(4099) (147)

Nearly three-fifths of parents/carers said doctors usually spent at least half the time talking to them about their child’s life with diabetes beyond medical care

5% 1% 2%

11%6% 12% 3% 3%

27%34% 31% 38%

30%

57% 59% 57% 57%67%

ALL ITA Child aged 0-9

Child aged10-14

Child aged15+


Sometimes (2)

Never (1)

Don't know/ notstated

Par

ents

/ C

arer

s



Q36 (PC): How often does the doctor spend time talking to you about your child’s life with diabetes beyond his/her medical care?

Mean rating: 3.2 3.2 3.0 3.2 3.6

(4099) (147)(52) (65) (30)

62%

78%85%

75% 73%

ALL ITA Child aged 0-9 Child aged 10-14

Child aged 15+

Q38 (PC): Is the doctor your child sees now for your diabetes still the same as the doctor she/he saw when he/she was younger?


% saying Yes

Par

ents

/ C

arer

sAbout three-quarters of parents/carers stated that their child still sees the same doctor for his/her diabetes as when he/she was younger

(4099) (147) (52) (65) (30)

Three-quarters of parents/carers claimed their child’s diabetes at times prevented their own activities from occurring


Q47 (PC): How often does your child’s diabetes prevent you from doing things you want to do?

1%

25% 26%13%

32% 33%

52% 59%

63%

54%63%

22% 15%23%

15%3%


Child aged10-14

Child aged15+


Sometimes (2)

Never (1)

Don't know

Par

ents

/ C

arer

s

Mean rating: 2.1 2.0 2.3 1.9 1.7


(4099) (147) (52) (65) (30)

Four-fifths of parents/carers at times argue with their child about their child’s approach to diabetes care


Q48 (PC): How often do you argue with your child about the way in which he/she takes care of his/her diabetes?

1% 4%19% 18%

42%

5% 3%

51% 60%

48%

66% 67%

28% 21%6%

29% 30%


Child aged10-14

Child aged15+


Sometimes (2)

Never (1)

Don't know

Par

ents

/ C

arer

s

Mean rating: 2.3 2.2 1.7 2.4 2.5


(4099) (147) (52) (65) (30)

Healthcare Professionals analysis6

Overall, a half of HCPs currently work as part of an integrated diabetes care team that meets regularly to discuss care of individual patients

Q2 (HCP): How would you describe the way that you work with colleagues who are also involved in treating/caring for children/adolescents with diabetes under your care?


Hea

lth

care

P

rofe

ssio

nal

s

7% 9%

42%

60%49%

32%

ALL ITA

Part of an integrateddiabetes care teamthat meets regularlyto discuss care ofindividual patients

Discuss individualpatient care withother HCPs whennecessary

Work independentlyand do not discussindividual patientcare with other HCPs

Don't know

(666) (78)

According to HCPs, the three diabetes specialists most commonly seen at diagnosis are the diabetes specialist, the diabetes nurse and the dietician


ALL (666)

ITA (78)



Dietician 74% 69%




Social worker 29% 5%

Podiatrist/foot specialist 8% 4%

Pharmacist 10% 3%

Q7 (HCP): Which of the following healthcare professionals (HCPs) do the children/adolescents with diabetes under your care see at diagnosis?

The vast majority of HCPs currently see children 4-12 years always or mostly with parents during visits for diabetes

Q6 (HCP): How often do you see your diabetes patient alone or together with his/her parents or other caregivers? Children 4-12 years


Hea

lth

care

P

rofe

ssio

nal

s

3%1%6%4%

92%90%

6%4%

ALL ITA

Always/mostly withparents

Sometimes alone/sometimes withparents

Always/mostly alone

Not applicable

(666) (78)

Just over half of HCPs currently see children aged 13-17 years always or mostly with parents



Hea

lth

care

P

rofe

ssio

nal

s

1%9% 8%

37%

51% 53%

3%

40%

ALL ITA



Always/mostly alone

Not applicable

(666) (78)

Two-thirds of HCPs currently see patients aged 18-25 always or mostly alone



Hea

lth

care

P

rofe

ssio

nal

s

16%

61%

70%

22%

6% 6%

1%

17%

ALL ITA



Always/mostly alone

Not applicable

(666) (78)

Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) .. Psychologist/counsellor?


One-third of HCPs reported that children/adolescents in their care see a Psychologist/counsellor once a year or less often

45% 40%

34%

8%13%

5% 12%8% 3%

33%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) ..Social worker?


About one-seventh of HCPs said children/adolescents see a Social Worker once a year or less often

65%

83%

27%

3%2%2% 1%

15%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Q8 (HCP): In general, how frequently do the children/adolescents with diabetes under your care see the following professionals (including yourself) ..Podiatrist/foot specialist?


About one fifth of HCPs also said children/adolescents see a Podiatrist/foot specialist once a year or less

69%75%

24%

3%2% 1%2% 1%

22%

ALL ITA


Every 3-6months

Every 6-12months



Hea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Q9 (HCP): How often do you provide information to your patients and their families about … Networking activities for parents to meet other parents of children with diabetes? (parent networks)


5%

38%37%

13% 18%

44% 44%

1%

ALL ITA

Always

Sometimes/rarely

Never

Not available inthis areaH

ealt

hca

re

Pro

fess

ion

als

More than two-fifths of HCPs always provide information to patients or families about Parent Networks

(666) (78)

Q9 (HCP): How often do you provide information to your patients and their families about … Networking activities for children and adolescents with diabetes to meet other children with diabetes? (e.g. children’s camps)


5%

35%26%

13%

18%

47%54%

3%

ALL ITA

Always

Sometimes/rarely

Never


ealt

hca

re

Pro

fess

ion

als

Over half of HCPs always provide information to patients or families about network activities to meet other children (e.g. children’s camps)

(666) (78)

Q9 (HCP): How often do you provide information to your patients and their families about … Family activities (for children, adolescents and their family members) to meet other families?


6%

41%35%

23%35%

31% 28%

3%

ALL ITA

Always

Sometimes/rarely

Never


ealt

hca

re

Pro

fess

ion

als

Only a quarter of HCPs always provided information to patients or families about family activities (for children, adolescents and their family members) to meet other families

(666) (78)

Q9 (HCP): How often do you provide information to your patients and their families about … Structured diabetes education programmes (e.g. better diabetes knowledge, insulin adjustment skills, adherence, self-care etc.)?


3%

27% 27%

13% 20%

57% 51%

1%

ALL ITA

Always

Sometimes/rarely

Never


ealt

hca

re

Pro

fess

ion

als

Half of HCPs always provide information to patients or families about structured diabetes education programmes

(666) (78)

Q9 (HCP): How often do you provide information to your patients and their families about …Activities or materials to help parents inform school staff about their child’s diabetes?


1%

30%24%

10%14%

59% 60%

1%

ALL ITA

Always

Sometimes/rarely

Never


ealt

hca

re

Pro

fess

ion

als

Three-fifths of HCPs always provide information to patients or families about activities or materials to help parents inform school staff about their child’s diabetes

(666) (78)

Only about one-fifth of HCPs currently evaluate the psychosocial needs of children/adolescents with diabetes and parents/carers using a structured assessment tool routinely (all the time)

Q10 (HCP) How often do you evaluate psychosocial needs of the children/adolescents with diabetes and their parents under your care using a structured assessment tool?


14%

65%

21%

7%

21%

49%

22%

All (666)I taly (78)

Always

Sometimes/rarely

Never

Don’t know

The vast majority of HCPs who currently rarely or never evaluate the psychosocial needs of children/parents would be interested in using a psychosocial assessment tool in the future

Q11 (HCP): Would you be interested in using a structured psychosocial assessment tool in the future?

Base: all healthcare professionals who rarely/never evaluate the psychosocial needs of children/parents

5% 5%

94% 95%

ALL ITA

Yes - interestedin usingstructuredpsychosocialassessment tool

No-notinterested inusingpsychosocialassessment tool

Hea

lth

care

P

rofe

ssio

nal

s

Base: 254 41


47%59%

52%41%

ALL ITA

Always

Sometimes/rarely

Never

Don't know

Hea

lth

care

P

rofe

ssio

nal

sTwo-fifths of HCPs always take the initiative to discuss emotional distress related to diabetes with children/adolescents

Q12 (HCP): How often do you take the initiative to discuss any of the following issues with your diabetes patients .. Emotional distress related to diabetes?

(666) (78)


1%

26%39%

73%62%

ALL ITA

Always

Sometimes/rarely

Never

Don't know

Hea

lth

care

P

rofe

ssio

nal

sThree-fifths of HCPs always take the initiative to review difficulties with diabetes self-management with children/adolescents

Q12 (HCP): How often do you take the initiative to discuss any of the following issues with your diabetes patients .. Review of difficulties with diabetes self-management ?

(666) (78)


1% 5%

49%

69%

50%

26%

ALL ITA

Always

Sometimes/rarely

Never

Don't know

Hea

lth

care

P

rofe

ssio

nal

s

Q12 (HCP): How often do you take the initiative to discuss any of the following issues with your diabetes patients .. Family functioning (split of responsibilities, conflicts, etc.)?

A quarter of HCPs always take the initiative to discuss family functioning (split of responsibilities, conflicts, etc.) with children/adolescents

(666) (78)


1% 1%

44%

60%

55%

38%

ALL ITA

Always

Sometimes/rarely

Never

Don't know

Hea

lth

care

P

rofe

ssio

nal

s

Q12 (HCP): How often do you take the initiative to discuss any of the following issues with your diabetes patients .. Issues related to diabetes at school?

Two-fifths of HCPs always take the initiative to discuss issues related to diabetes at school with children/adolescents

(666) (78)

26%

23%

ALL ITA

HCPs said just under one-quarter of children/adolescents in their care are not in good glycaemic control due to unresolved psychological/social problems

% o

f c

hil

dre

n/a

do

les

cen

ts

Q13 (HCP): Considering the children/adolescents with diabetes under your care, approximately what percentage of these patients .. Are not in good glycaemic control because of unresolved psychological or social problems (e.g. depression, family issues, poor coping, lack of motivation, etc)?


(666) (78)

24%

21%

ALL ITA

HCPs stated that about one fifth of children/adolescents in their care are not in good glycaemic control due to poor adherence to their insulin regimen

Q13 (HCP): Considering the children/adolescents with diabetes under your care, approximately what percentage of these patients .. Are not in good glycaemic control because of poor adherence to their insulin regimen?


% o

f c

hil

dre

n/a

do

les

cen

ts

(666) (78)

26%

23%

ALL ITA

HCPs stated that about one quarter of children/adolescents in their care experienced difficulties with parents being over-protective or nagging

Q13 (HCP): Considering the children/adolescents with diabetes under your care, approximately what percentage of these patients .. Experience difficulties with parents being over-protective or nagging?


% o

f c

hil

dre

n/a

do

les

cen

ts

(666) (78)

19%

11%

ALL ITA

HCPs stated that about one tenth of children/adolescents in their care experience difficulties due to parents not being involved enough in their diabetes

Q13 (HCP): Considering the children/adolescents with diabetes under your care, approximately what percentage of these patients .. Experience difficulties due to parents not being involved enough in their diabetes?


% o

f c

hil

dre

n/a

do

les

cen

ts

(666) (78)

According to two-thirds of HCPs, the main reason children/ adolescents do not adhere to their insulin regimen is worry about hypoglycaemia


ALL (666)

ITA (78)

Worry about hypoglycaemia 61% 67%

Lack of support from family/ friends 54% 41%

Worry about weight gain 39% 40%

Lack of support from the school 46% 37%

Lack of adequate knowledge/ skills 37% 37%

Lack of access to insulin/ monitoring supplies 16% 1%

Other 25% 13%

Q14 (HCP): In your opinion, what do you think are the main reasons why children/adolescents with diabetes do not adhere to their insulin regimen?

14%

12%

ALL ITA

HCPs believed that a minority of children/adolescents experience depression and/or anxiety due to their diabetes, but more than twice as many experienced anxiety as experienced depression


Q15 (HCP): Approximately what percentage of the children/adolescents with diabetes under your care experience …depression due to their diabetes..anxiety due to their diabetes?

25%

28%

ALL ITA

a) D

epre

ssio

nb

) A

nxi

ety

% of children/ adolescentsexperiencing disorder

(666) (78)

(666) (78)

A third of HCPs thought they were able to provide adequate psychosocial support to all or more than half of children/ adolescents with diabetes who had psychosocial problems

Q16 (HCP): In your opinion, for what proportion of the children/adolescents with diabetes under your care, who have psychosocial problems, are you or your healthcare team able to provide adequate psychosocial support?


33%

22%

27%

45%34%

40%

ALL ITA

More thanhalf/All

Half

None/less thanhalfH

ealt

hca

re

Pro

fess

ion

als

(666) (78)

19%

7%

ALL ITA

Overall, HCPs referred less than one tenth of children/adolescents to mental health specialists or counsellors for psychosocial support on an annual basis


Q17 (HCP): Of the children/adolescents with diabetes under your care, approximately what percentage do you refer to mental health specialists or counsellors for psychosocial support on an annual basis?

% of children/ adolescentsreferred

(666) (78)

37%

44%

ALL ITA

According to HCPs, about one-fifth of parents/carers experience depression due to their child’s/adolescent’s diabetes; nearly twice as many experienced anxiety


Q18 (HCP): Now, approximately what percentage of the parents/carers of children/adolescents with diabetes under your care experience…depression due to their child’s diabetes…anxiety due to their child’s diabetes?

% of parents/ carers experiencingdisorder

20%

23%

ALL ITA

a) D

epre

ssio

nb

) A

nxi

ety

(666) (78)

(666) (78)

Just over half of HCPs believed that children’s/ adolescents’ diabetes had a major or moderate impact on their performance at school

7% 5%2% 10%

23%

29%

68%55%

ALL I TA


Minorimpact

No impact

Don'tknow/ depends

Q19 (HCP): In general, how much of an impact do you think your patients’ (children and adolescents) diabetes have on their performance at school?


(666) (78)

About two-fifths of HCPs believed that major/moderate improvement in the quality of resources/services/support was needed in the medical management of children’s/ adolescents’ diabetes

3% 5%8% 6%

42% 45%

46% 44%

ALL I TA

Major/ moderate improvement

Minor improvement

No improvement

Don't know/ depends


Q23a (HCP): When considering the quality of resources, services and support available to the children/adolescents with diabetes under your care (and their families), how much improvement is needed in … medical management?

(666) (78)

Four-fifths of HCPs believed that major/moderate improvement in the quality of resources/services/support was needed in the area of psychosocial support from the healthcare team for children/ adolescents with diabetes

2% 1%2% 3%

16% 14%

79% 82%

ALL I TA


Minor improvement

No improvement

Don't know/ depends


Q23b (HCP): When considering the quality of resources, services and support available to the children/adolescents with diabetes under your care (and their families), how much improvement is needed in … psychosocial support from the healthcare team?

(666) (78)

Just over two-thirds of HCPs believed that major/moderate improvement in the quality of resources/services/support was needed in age-appropriate self-management education for children/ adolescents with diabetes

2% 1%5% 4%

28% 26%

65% 70%

ALL I TA


Minor improvement

No improvement

Don't know/ depends


Q23c (HCP): When considering the quality of resources, services and support available to the children/adolescents with diabetes under your care (and their families), how much improvement is needed in … age-appropriate self-management education?

(666) (78)

More than four-fifths of HCPs thought that major/moderate improvement in the quality of resources/services/support was needed in terms of support and understanding from schools for children/ adolescents with diabetes

3% 4%12% 8%

85% 88%

ALL I TA


Minor improvement

No improvement

Don't know/ depends


Q23d (HCP): When considering the quality of resources, services and support available to the children/adolescents with diabetes under your care (and their families), how much improvement is needed in … support and understanding from school?

(666) (78)

Three-quarters of HCPs thought that major/moderate improvement in the quality of resources/services/support was needed in terms of camps/networking opportunities for children and families

5% 5%3% 4%

22% 17%

71% 74%

ALL I TA


Minor improvement

No improvement

Don't know/ depends


Q23e (HCP): When considering the quality of resources, services and support available to the children/adolescents with diabetes under your care (and their families), how much improvement is needed in … camps/networking opportunities for children and families?

(666) (78)

Four-fifths of HCPs thought that major/moderate improvement in the quality of resources/services/support was needed in terms of the transition process from paediatric to adult care for children/adolescents with diabetes

3% 3%3% 5%13% 12%

81% 81%

ALL I TA


Minor improvement

No improvement

Don't know/ depends


Q23f (HCP): When considering the quality of resources, services and support available to the children/adolescents with diabetes under your care (and their families), how much improvement is needed in … transition process from paediatric to adult care?

(666) (78)

Four-fifths of HCPs judged their country’s healthcare system to be good/excellent at providing adequate care and education for children/adolescents with diabetes

Q24 (HCP): In general, how well is your country’s healthcare system organised to provide adequate care and education for children and adolescents with diabetes?


15%

24%

15%

61%

81%

4%

ALL ITA

Good/Excellent

Fair

PoorHea

lth

care

P

rofe

ssio

nal

s

(666) (78)

Conclusions7

Self-management• Only half of young people believed their blood sugar monitoring

currently met targets outlined in recommendations they had been given.

• Similarly, healthcare professionals reported about half the children/adolescents with diabetes under their care had adequate levels of HbA1c.

• Young adults reported the greatest difficulties managing to do exercise, monitoring of blood sugars, and coping with diabetes in general.

• Healthcare professionals agreed that children/adolescents were least successful in achieving an adequate level of exercise, but only a quarter felt that all or most of their patients were coping well emotionally with their diabetes.

• HCPs estimated that control was poorer with children aged 0-12 than control for adolescents.

• Wider dissemination of information to young adults about blood sugar testing, treatment and complications of diabetes would be useful.

Parent perspective

•69% of parents worried about long-term health problems for their children, yet only one-third talk to their child’s diabetes doctor when having difficulty managing their child’s diabetes.

•70% of parents/carers expressed worry/concern over their children having low blood sugar at least half the time

Perception of healthcare professionals

• Frustration and unhappiness related to diabetes is most often expressed to family and friends of young people, not directly to the healthcare professionals involved in the care of their diabetes.

• Only a half of young adults felt that their doctors and/or professionals in their diabetes team had a good understanding of the challenges or difficulties they faced on a daily basis managing their diabetes.

• Two-thirds of parents/carers echoed this belief

Perceptions of healthcare support

• Both young adults and parents/carers said that various healthcare professionals seen for diabetes management were not always available when needed.

• The perception exists amongst some young adults and parents/carers that there is a lack of communication amongst healthcare professionals caring for young people regarding individual cases (i.e. they don’t talk to each other).

• However, half of healthcare professionals stated that they currently work as part of an integrated diabetes care team that meets regularly to discuss care of individual patients.

• Considering all healthcare professionals currently seen for their diabetes, young adults felt they had the best support from the diabetes specialist. Similar findings were apparent for parents/carers.

Psychosocial care approach

•Only around one-fifth of HCPs currently evaluate the psychosocial needs of children/adolescents with diabetes and parents/carers using a structured assessment tool routinely (all the time).

•But the vast majority who are not currently utilising such a tool for assessment would be interested in doing so, in future.

Community support

•Only about one seventh of young adults and one fifth of parents/carers were actively involved in community activities around diabetes, yet of those young adults not currently involved, one quarter would like to be involved in some way.

•Both young adults and parents/carers considered it important to talk to other young adults with diabetes/other parents and carers.

Conclusions: School • Although support from various sources regarding diabetes was

judged by young adults as acceptable, overall, respondents felt that the least support came from schools, their communities and society in general.

• Both young adults and parents/carers identified a need for increased teacher training at schools to deal with emergency situations, and parents/carers also wanted teachers to be better informed about diabetes.

• Other than friends, teachers were the individuals that young people were most likely to approach if help was needed managing their diabetes at school, according to all three groups.

• However, readily available glucagon at schools would also help.

Overall needs for improvements

• The two main improvements needed for diabetes management identified by both young adults and parents/carers were easier monitoring of blood sugars, and improved public knowledge of diabetes.

• The majority of healthcare professionals thought that a major/moderate improvement is needed in the quality of several different aspects of resources, services and support available for children/adolescents with diabetes and their families (except in the area of medical management).

Financial burden and treatments

•Diabetes management represents a moderate/major financial burden for approximately one fifth of young adults and a third of parents/ carers, with one fifth of families claiming limited financial ability to cope with the needs of diabetes management.

•All three respondent groups believed that insulin pumps are more difficult to obtain than other medicines/devices required for managing diabetes.

Call to Action8

Call to Action

• Increase the communication between child, family and healthcare professional

• Manage the transition’s phase between the Paediatrics Diabethological support and the adult one.

• Promote to self control and self management

• Give psychological support to young people with Diabetes and their families.

• Start up Information’s programs and assistance in the school sphere

• Facilitate the introduction of young people in aggregation, play and sports paths

• Awaken public opinion to early diagnosis of child’s Diabetes

• Increase the sensitiveness of institutional key opinion leader towards the individual, familiar needs, related to juvenile Diabetes

agenda

Documents

dawn diabetes

dawn study

dawn youth survey

diabetes surveysmarch

diabetes patients

national dawn youth

dawn programme

youth ambassadors