15th IPOS - Introducing CancerStories in Rotterdam, NL (Nov2013)


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  • Agency for Healthcare Research and Quality. Your Guide to Choosing Quality Healthcare. [June
    16, 2008]. Accessed at http://www.ahrq.gov/consumer/qnt/qntqlook.htm
  • Johnsen AT, Petersen MA, Pedersen L, Houmann LJ, Groenvold M. Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problemsPsychooncology. 2012 Oct 8. doi: 10.1002/pon.3204. [Epub ahead of print]
  • Karen Clark Matt Loscalzo City of Hope
  • 15th IPOS - Introducing CancerStories in Rotterdam, NL (Nov2013)

    1. 1. Introducing "CancerStories” An Innovative Video Diary Programme Providing Peer Support Online Alex J Mitchell www.twitter.com/_alexjmitchell Consultant in Psycho-oncology and Hon SnR University Hospitals Leicester
    2. 2. We are currently looking for Evaluators Partners Co-developers (who help rate) (who help distribute) (who help expand) To help us develop and improve cancerstories
    3. 3. What is Ideal Treatment? 1. Effective 2. Acceptable 3. Easily accessible (available) 4. Proven (evidence based) 5. Value for money
    4. 4. Ideal Treatment Conventional Psychosocial Rx. 1. Effective Often 2. Acceptable a little (40%) 3. Easily accessible (available) No 4. Proven (evidence based) mostly 5. Value for money probably
    5. 5. 1000 Adv Cancer Patients in Denmark (Johnsen, 2013) 90% 80% Had Problem Helped 70% Adequate Help 60% 50% 40% 30% 20% 10% Se xu al ity C on ce nt ra tio n Fa m ily an d fri en ds W or ry Fa tig ue al ac tiv it i es Ph ys ic ai ly ac tiv it i es W or ka nd d D ep re ss i on e fa pp et it La ck o oe a D ys pn N au se a Pa in 0% Johnsen Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems Psychooncology. 2012
    6. 6. Is it time for a Treatment Revolution? 70% with distress do not receive timely psychosocial treatment 60% do not want a classical psychosocial intervention Provision of services is patchy Community support often unavailable
    7. 7. Cancer Stories …power of online guided peer support
    8. 8. Overview of CancerStories!
    9. 9. CancerStories is a collection of true life accounts of how real people coped with cancer Hugh, Prostate Ca
    10. 10. CancerStories is about the person’s own account, what is meaningful to them, how they coped Virginia, Lung Ca
    11. 11. All patients have kindly given their consent to record their account for the benefit of future patients Sue, Breast Ca
    12. 12. Patients are interviewed in an informal but professional style and asked to give an honest but informative account about their cancer journey Tom, Osteosarcoma
    13. 13. Accounts are between 3060mins, enough time to tell others what is really important Louisa, Breast Ca
    14. 14. Patients can share their own accounts with family and friends before deciding to share with the wider community John, Prostate Ca
    15. 15. Each account is evaluated by a panel of clinicians and also by other patients Rupen, Lymphoma
    16. 16. Dissemination of CancerStories!
    17. 17. Evaluation of CancerStories!
    18. 18. Evidence 1. Clinicians 2. Patients 3. Trial
    19. 19. Would CS be useful in your clinic? Never 0 Sometimes Very Often 5 10 8
    20. 20. How would you rate CS overall? Poor 0 Average Outstanding 5 10 9
    21. 21. Improvements to CancerStories
    22. 22. Improvements to CancerStories Pain Fatigue Distress Depression Anxiety Weight/eating Sleeping Families Work Caregivers Communication Complementary rx We are multiple developing 5 minute themes
    23. 23. Thanks to the patients of CancerStories! Want to help? Get in touch Coping.with.cancer.uk@gmail.com