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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
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We are currently looking for Evaluators (who help rate) Partners (who help distribute) Co-developers (who help expand) To help us develop and improve cancerstories
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What is Ideal Treatment? 1.Effective 2.Acceptable 3.Easily accessible (available) 4.Proven (evidence based) 5.Value for money
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Ideal Treatment Conventional Psychosocial Rx. 1.EffectiveOften 2.Acceptablea little (40%) 3.Easily accessible (available)No 4.Proven (evidence based)mostly 5.Value for moneyprobably
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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 1000 Adv Cancer Patients in Denmark (Johnsen, 2013)
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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
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Cancer Stories …power of online guided peer support
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Overview of CancerStories!
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CancerStories is a collection of true life accounts of how real people coped with cancer Hugh, Prostate Ca
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CancerStories is about the person’s own account, what is meaningful to them, how they coped Virginia, Lung Ca
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All patients have kindly given their consent to record their account for the benefit of future patients Sue, Breast Ca
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Patients are interviewed in an informal but professional style and asked to give an honest but informative account about their cancer journey Tom, Osteosarcoma
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Accounts are between 30- 60mins, enough time to tell others what is really important Louisa, Breast Ca
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Patients can share their own accounts with family and friends before deciding to share with the wider community John, Prostate Ca
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Each account is evaluated by a panel of clinicians and also by other patients Rupen, Lymphoma
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Dissemination of CancerStories!
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Evaluation of CancerStories!
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Evidence 1.Clinicians 2.Patients 3.Trial
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NeverVery OftenSometimes 0 5 10 Would CS be useful in your clinic? 8
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PoorOutstandingAverage 0 5 10 How would you rate CS overall? 9
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Improvements to CancerStories
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Pain Fatigue Distress Depression Anxiety Weight/eating Sleeping Families Work Caregivers Communication Complementary rx We are multiple developing 5 minute themes Improvements to CancerStories
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Thanks to the patients of CancerStories! Want to help? Get in touch Coping.with.cancer.uk@gmail.com
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