DAWN Youth survey results


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  • Objectives of survey: Gain understanding of the challenges and issues related to management of diabetes in children and young adults. 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 Identify new avenues for improvements of psychosocial support in paediatric diabetes Create an innovative dialogue platform that can engage all key stakeholders in new action Provide care providers, national patient associations, DAWN youth boards, policy-makers, parents and youth with new insights into the needs of families with children with diabetes, young adults, and caregivers Identify local opportunities for improvement in community and healthcare support Use as guidance for designing applied clinical psychosocial research initiatives
  • Sample Questions for Fact-Finding Study: Is there a general disability act or law or legislation that ensures equal access to education and health for children with disabilities in your country? If a disability act protecting equal access to education is in place in your country, has a precedent been set anywhere in the country that applies this law to children with diabetes? Is diabetes-related support in schools regulated in your country or region by government or other official organisation s?  Are there nurses on staff at schools?  If yes, how widely is nurse support available --all schools, most schools, some schools, or very few schools? If nurses are on staff at some or all schools, are they providing support to children with diabetes? Can school nurses or school staff assist children with diabetes in glucose testing, administration of insulin, and / or administration of other medications? Please describe whether teachers/other school personnel are allowed to assist children in the event of hypoglycaemia or other diabetes-related emergencies, including administration of glucagon. If laws and regulations exist to oversee equal education and / or diabetes support, please indicate who oversees, sets and enforces these regulations in your country (for example: local schools boards, local/city government, regional government, or national government). How widely enforced are such regulations? Are you aware of educational programmes or materials that have been developed in your region or country to educate school personnel about diabetes and more specifically, how to provide care and support for children with diabetes?
  • Q4 : Which of the following statements best describes how you think you are now dealing with your diabetes 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
  • 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?
  • Q7 (PC): How often do you worry about your child having long-term health problems as a result of his/her diabetes?
  • Overall, parents and youth called for major improvement in care and psychosocial support Global areas of improvement were: Better financial support for diabetes from insurance and/or government Better public awareness and knowledge of diabetes Better psychosocial care Additional areas for improvement included: Better/more convenient treatments Easier availability of better types of food Better/easier ways to monitor blood sugars
  • DAWN Youth survey results

    1. 1. RESULTS highlights
    2. 2. Introduction Slide no Our aspiration is to lead the fight against diabetes by putting people with diabetes first
    3. 3. Objectives Slide no Establish a new unique knowledge base around young people with diabetes Draw upon knowledge to guide actions on a national and global level Improve awareness of the particular needs for young people with diabetes
    4. 4. Methodology – DAWN Youth WebTalk survey Slide no <ul><li>Young adults with diabetes aged 18 to 25 </li></ul><ul><li>Parents or carers of a child or adolescent with diabetes </li></ul><ul><li>Health professionals who provide care to children and young people with diabetes </li></ul>3 online surveys <ul><li>Overseen by the intl. DAWN Youth Committee, IDF and ISPAD </li></ul><ul><li>To understand the unique challenges of youth with diabetes and their carers </li></ul><ul><li>Data collected July 07 – March 08 </li></ul><ul><li>Recruitment done with national committees and patient associations </li></ul>
    5. 5. Scope - DAWN Youth WebTalk survey Slide no Brazil Denmark Germany Italy Japan Netherlands Spain USA TOTAL HCP 289 30 78 78 119 38 51 102 785 Parents/ Carers of a person with diabetes (aged 0-18) Young adults with diabetes (aged 18 – 25) 653 601 196 147 260 252 377 1,613 4,099 394 204 195 311 235 96 154 314 1,903 1,336 835 469 536 614 386 582 2,027 6,787 TOTAL
    6. 6. Methodology – World-wide fact-finding study Slide no <ul><li>To benchmark national guidelines and strategies for children with diabetes </li></ul><ul><li>To create a global baseline to measure impact of DAWN Youth over time </li></ul><ul><li>Consultation with national stakeholders </li></ul><ul><ul><li>Patient associations, natl. advisors </li></ul></ul><ul><li>- Desktop research (validation of data) </li></ul>Objective Methodology <ul><li>Israel </li></ul><ul><li>Italy </li></ul><ul><li>Japan </li></ul><ul><li>Luxembourg </li></ul><ul><li>Mexico </li></ul><ul><li>Netherlands </li></ul><ul><li>Poland </li></ul><ul><li>Singapore </li></ul><ul><li>South Africa </li></ul><ul><li>Brazil </li></ul><ul><li>Croatia </li></ul><ul><li>Czech R. </li></ul><ul><li>Denmark </li></ul><ul><li>Egypt </li></ul><ul><li>Germany </li></ul><ul><li>Greece </li></ul><ul><li>India </li></ul><ul><li>Ireland </li></ul><ul><li>Spain </li></ul><ul><li>Sweden </li></ul><ul><li>Turkey </li></ul><ul><li>UK </li></ul><ul><li>US </li></ul><ul><li>Ukraine </li></ul>24 countries
    7. 7. Overall key observations Slide no Approx 30% of young adults felt their diabetes was rarely/never in control and had poor well-being My diabetes is well under control My diabetes is mostly under control My diabetes is rarely/ never under control Likely depression Poor well-being Good well-being ALL ALL
    8. 8. Overall key observations cont. <ul><li>More than 40% of parents/carers had poor well-being or likely depression </li></ul><ul><li>More than 80% of parents feel overwhelmed by their child’s diabetes at least sometimes </li></ul>Slide no HCPs perceive psychosocial issues in many young people with diabetes Experience difficulties due to lack of involvement of parents Poor control due to poor adherence to insulin regimen Poor control due to unresolved psychological/social issues Experience difficulties due to over-protective /nagging parents Base: all healthcare professionals (HCPs) % of children/adolescents Diabetes affects parents / carers too
    9. 9. Overall key observations cont. Slide no HCPs: Reasons for poor insulin adherence Base: all healthcare professionals (HCPs)
    10. 10. Overall key observations cont. Slide no My child sometimes has to miss school because of diabetes Diabetes has a major/moderate impact on school performance Parent/carer Young adult HCPs Diabetes often affects schooling <ul><li>3 out of 4 parents cannot rely on a nurse/health worker to assist their child during school time </li></ul><ul><li>3 out of 4 parents and young adults called for teachers who were better informed about diabetes </li></ul>Parents call for improvement in schools
    11. 11. The fact-finding study revealed an urgent need for legislative and national action Slide no Adequate Limited Inadequate/none Brazil Denmark Germany Italy Japan Netherla.. S. Africa US UK Croatia Egypt Greece India Ireland Luxemburg Spain Ukraine Are staff/nurses in schools permitted to assist with insulin injections if needed? Extensive
    12. 12. Overall key observations Perceived improvement areas Slide no Better financial diabetes support from insurance or government Improved public awareness and knowledge of diabetes Better/more convenient treatment methods Better/easier ways to monitor blood sugars Easier availability of better types of food Areas for improvement (beyond schooling) Parent/carer Young adult Improvement areas: HCPs HCPs Transition process from paediatric to adult care Camps/networking opportunities Support and understanding from school Age-appropriate self-management education Medical management Psychosocial support from healthcare team
    13. 13. Additional findings <ul><li>Less than 50% are involved in community activities related to diabetes </li></ul><ul><li>Approx 25% find that diabetes regularly causes them embarrassment </li></ul><ul><li>Approx 12% experience discrimination </li></ul>Slide no Young adults with diabetes Parents of children with diabetes <ul><li>Approx 70% worry about the risk of severe long-term health problems for their child </li></ul><ul><li>Approx 75% experience work and living disruptions due to their child’s diabetes </li></ul><ul><li>Approx 40% regularly feel overwhelmed by their child’s diabetes </li></ul>
    14. 14. The DAWN Youth survey reinforces the diverse range of influencers and influencees Slide no Extended family <ul><li>Overall, a critical need for major improvements in care and psychosocial support was identified </li></ul><ul><li>Family, health-care, school and social factors were shown to influence quality of life and self-care independently </li></ul><ul><li>To improve outcomes, a holistic approach is key </li></ul>
    15. 15. From study to action: The DAWN Youth initiative defines 5 key areas for global action Improve support for children with diabetes in schools Peer support & networking for young people with diabetes Promote access to age-appropriate education & psychosocial care Address psychosocial issues of type 2 diabetes in youth Support parents & families
    16. 16. Slide no Advocacy, engagement & media
    17. 17. Slide no