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Update on the Cambridge TYA Projects

Update on the Cambridge TYA Projects. Helen Hatcher. Cambridge TYA Projects. Exercise Initiative Fatigue workshops DVD and exercise program Fertility Psycho-social Website Late effects Tracker TYA focus group and Young Adult Co-Leads. QIPP.

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Update on the Cambridge TYA Projects

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  1. Update on the Cambridge TYA Projects Helen Hatcher

  2. Cambridge TYA Projects • Exercise Initiative • Fatigue workshops • DVD and exercise program • Fertility • Psycho-social • Website • Late effects Tracker • TYA focus group and Young Adult Co-Leads

  3. QIPP • Improvements in quality of information (website) or activity during and after treatment (DVD) • Innovative methods which were targeted at young people, designed and developed by them • Increased productivity-attendance at events/appointments/knowledge of trials as well as physically more active and productive • Aim to prevent isolation (website) and longer terms effects of inactivity and obesity after treatment. May also reduce some late effects related to inactivity. • Efficient-can be distributed widely

  4. website

  5. website • Designed by young people • Evolved to meet the needs of young people and provide information • Central source • About hospital and care • About benefits • Activities for young people • Patient stories • Patient forum (peer support at a distance) • Listed clinical trials

  6. Website front page

  7. Testing of website use

  8. How was the website located and accessed?

  9. Key search terms

  10. Most popular areas of the site

  11. What’s happening

  12. Patient stories • What they told us they wanted next...

  13. Website access worldwide

  14. Website-where next? • Forum section removed • New beginnings/survivorship section being built and added • More young peoples’ stories being added • Latest year’s analysis due this week! • New TYA panel to review

  15. Exercise/activity DVD

  16. Aims of Activity DVD • Result of Focus group with young people • Exercises specific to them • What had happened to others • Ideas about managing fatigue • Suggestions about different activities • Split into sections • Stories • Fatigue workshop and suggestions • Specific exercises • Bed, chair, limb restrictions, brain surgery • Very fit!

  17. Exercise DVD

  18. Next steps • Re-evaluate website • Survivorship section to website • Launch DVD in 2 pilot centres (April) • Cambridge and Leeds • Review DVD after 3 months • What works • What needs changing • What needs adding • Larger launch after reworking DVD if needed

  19. Thanks • The young people and their families • Nick Kostov as young adult lead for DVD • Physiotherapists • Helen Love • Jimmy Teens • TYA team • Wendy Moss and Deborah Critoph • NCSI

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