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  1. DAWN YOUTHInterim resultsin ItalyHealthcare Professionals, Parents/Carers, and Young Adults with Diabetes SurveysMarch 2008

  2. Agenda 1 Background 2 Key Objectives 3 Methodology/Sample 4 Young adults/parents/carers 5 Parents/carers 6 Healthcare professionals 7 Conclusions 8 Recommendations

  3. Background 1

  4. 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.

  5. 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

  6. Key Objectives 2

  7. 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

  8. Methodology/Sample 3

  9. 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.

  10. 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

  11. 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.

  12. 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

  13. Sample • The sample achieved was as follows: • The data displayed in these charts are based on all interviews completed by 31st January 2008

  14. One eighth of young adults were currently in secondary school; the majority of parents/carers had a child still in full-time education % saying YES Young adults Parents / Carers Base: all young adults with diabetes; all parents/carers Q39 (YA): Are you currently in secondary school? Q21 (PC): Is your child still in full-time education?

  15. 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 Parents / Carers 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?

  16. The majority of children with diabetes were boys, based on parents’/carers’ responses Parents / Carers Base: all parents/carers Q4 (PC): Is this child/young person with diabetes a boy or a girl?

  17. Three-quarters of HCPs currently personally see more than 5 children/adolescents with Type 1 diabetes each week Healthcare Professionals (78) (666) Mean: 17.3 30.6 Base: all healthcare professionals 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?

  18. 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 Healthcare Professionals (78) (666) Mean: 2.8 2.7 Base: all healthcare professionals 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?

  19. Analysis 4 Young Adults, Parents/Carers/HCPs 5 Parents/Carers 6 Healthcare Professionals

  20. Young Adults, Parents/carers, HCPs 4

  21. Analysis: Young Adults,Parents/carers, HCPs 4i Diabetes, Diagnosis and Control 4ii Perceptions of Living with Diabetes: QoL 4iii Issues Related to Diabetes Treatment 4iv Social, Emotional, Employment Issues 4v Diabetes Management/HCP Involvement 4vi Expense of Managing Diabetes/Financial Impact 4vii Education/School Issues 4viii Support from Various Sources

  22. Analysis: Young Adults,Parents/carers, HCPs 4ix Value/Opinions on Diabetes-related Activities 4x Information Sources on Diabetes 4xi Areas for Improvement in Diabetes Care 4xii Perceptions of Living with Diabetes in Future

  23. Diabetes diagnosis and control (YA, PC) 4i

  24. The vast majority of young adults who answered the survey, or who were being cared for, had type 1 diabetes Type 1 Diabetes Type 2 Diabetes Base: all young adults with diabetes; all parents/carers 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?

  25. 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 (1905) (4099) (311) (147) Base: all young adults with diabetes; all parents/carers 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?

  26. 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 Base: all young adults with diabetes Base: all parents/carers Q3 (YA): What type of training or information did you receive when you first found out that you had diabetes? Q43 (PC): What type of training or information did you and your child receive when you first found out that he/she had diabetes?

  27. Three-quarters of young adults said their diabetes was rarely or never under control Young adults Base: all young adults with diabetes Q4 (YA) : Which of the following statements best describes how you think you are now dealing with your diabetes

  28. Perceptions of living with diabetes: Quality of life and well being (YA, PC) 4ii

  29. Three-quarters of young adults could talk to parents or friends, while only 7% could talk to a diabetes doctor Excludes country answers less than 4% Base: all young adults with diabetes Q5 (YA): At times when you’re feeling frustrated or unhappy about living with your diabetes, who can you talk to about your feelings?

  30. Only one seventh of young adults said it was very important to talk with other people their age who had diabetes like them Young adults Scale: 1 (Not at all important) to 5 (very important) Mean rating: 3.7 3.7 3.8 3.6 3.9 Base: all young adults with diabetes Q6 (YA): How important is it for you to talk with other people your age who have diabetes like yourself?

  31. 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 Young adults Scale: 1 (very dissatisfied) to 5 (very satisfied) Mean rating: 3.5 3.4 3.3 3.3 3.6 Base: all young adults with diabetes Q7d (YA): How satisfied are you with …. the way you are (were) treated at school?

  32. The majority of young adults and carers were satisfied or very satisfied with support from the young person’s/child’s friends Young adults Scale: 1 (very dissatisfied) to 5 (very satisfied) Mean rating: 3.8 3.7 Parents / Carers Mean rating: 3.8 3.6 Base: all young adults with diabetes; all parents/carers 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?

  33. The majority of parents and young adults were satisfied or very satisfied with the level of support they received from doctors Young adults Scale: 1 (very dissatisfied) to 5 (very satisfied) Mean rating: 3.9 3.8 Parents / Carers Mean rating: 4.0 4.0 Base: all young adults with diabetes; all parents/carers 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?

  34. Four-fifths of young adults were satisfied or very satisfied with the support they received from their parents/family Young adults Mean rating: 4.1 4.0 Scale: 1 (very dissatisfied) to 5 (very satisfied) Base: all young adults with diabetes Q7b (YA): How satisfied are you with …. the support you receive from your parents/family?

  35. Nearly three-fifths of parents/carers were satisfied or very satisfied with the support they received from their friends Parents / Carers Scale: 1 (very dissatisfied) to 5 (very satisfied) Mean rating: 3.7 3.6 Base: all parents/carers Q12c (PC): How satisfied are you with …. the support you receive from your friends?

  36. A third of parents/carers were satisfied or very satisfied with the support they received from employers Parents / Carers Mean rating: 3.6 3.3 3.8 3.2 3.1 Scale: 1 (very dissatisfied) to 5 (very satisfied) Base: all parents/carers Q12e (PC): How satisfied are you with …. the support that you, as a parent, receive from your employer?

  37. On average, young adults believed they had a good quality of life Mean scores 10 – top/best Young adults 1 – bottom/ worst Base: all young adults with diabetes Scale: 1 (bottom-worst) to 10 (top-best) 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?

  38. Over four-fifths of young adults and three-fifths of carersjudged their general well being over the last two weeks to be good, based on the WHO-5 measure of well-being Young adults Mean rating: 56.4 61.4 60.5 61.8 65.8 Parents / Carers Mean rating: 53.8 52.5 50.1 53.3 55.2 50.0 54.5 Base: all young adults with diabetes; all parents/carers 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

  39. Young adults who were more satisfied with the level of support they received from HCPs achieved higher WHO-5 scores Satisfaction with level of support from HCPs Mean scores based on WHO-5 scale of wellbeing Young adults Base: all young adults with diabetes Q7a (YA): How satisfied are you with …. the support you receive from your doctors/other healthcare professionals? 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…

  40. Amongst parents/carers, those who were dissatisfied or very dissatisfied with the level of support from HCPs achieved lower WHO-5 scores Satisfaction with level of support from HCPs Mean scores based on WHO-5 scale of wellbeing Parents / Carers Base: all parents/carers 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?

  41. Issues related to diabetes treatment (YA, PC) 4iii

  42. 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 Young adults Parents / Carers Base: all young adults with diabetes; all parents/carers Q14 (YA):What level of HbA1c do you try to achieve? Q17 (PC) What is your child’s target HbA1c level?

  43. Half the young adults with diabetes took their insulin by pen, and three-quarters of parents/carers said their child took insulin by pen Young adults Parents / Carers Base: all young adults with diabetes; all parents/carers 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?

  44. Over four-fifths of young adults with diabetes using pens, pumps or syringes take 4-6 insulin shots/boluses per day Young adults Base: 1860 311 Parents / Carers Base: 4056 147 Base: all who use pens/pumps/syringes; all whose diabetes child uses pens/pumps/syringes 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?

  45. 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 Young adults Parents / Carers Base: all young adults with diabetes; all parents/carers 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?

  46. The majority of young adults and parents said that their/their child’s current level of HbA1c was 7.5 – 8.5 Young adults Parents / Carers Base: all young adults with diabetes; all parents/carers Q13 (YA):What is your current or latest level of HbA1c? Q16 (PC) What is your child’s current or latest HbA1c level?

  47. Overall, in both age groups, HCPs estimated that about one half of children/adolescents under their care had adequate levels of HbA1C Healthcare Professionals (666) (78) Base: all healthcare professionals 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?

  48. 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 Patients 0-12 years (78) (666) Mean level: 7.5 7.4 Patients 12-18 years (666) (78) Mean level: 8.1 7.8 Base: all healthcare professionals Q5 (HCP): On average, what level of HbA1c do these children aged 0-12 years and 13-18 years have?

  49. Almost half of young adults and three-fifths of parents/carers were satisfied with the medicines available for diabetes % satisfied (4) or very satisfied (5) Age of diabetes child/ Age of young adult at diagnosis (24) (147) (52) (30) (311) (1905) (65) (4099) (174) (111) Base: all young adults with diabetes; all 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?

  50. Approximately half of young adults and three-fifths of parents/carers expressed satisfaction with equipment available for measuring blood sugar % satisfied (4) or very satisfied (5) Age of diabetes child/ Age of young adult at diagnosis (147) (52) (311) (1905) (65) (4099) (174) (111) (24) (30) Base: all young adults with diabetes; all 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?