introducing " cancerstories ” an innovative video diary programme providing peer support...
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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. We are currently looking for Evaluators (who help rate) - PowerPoint PPT PresentationTRANSCRIPT
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Introducing "CancerStories”
An Innovative Video Diary Programme Providing Peer Support Online
Introducing "CancerStories”
An Innovative Video Diary Programme Providing Peer Support Online
Alex J Mitchell www.twitter.com/_alexjmitchell
Consultant in Psycho-oncology and Hon SnRUniversity 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?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 TreatmentIdeal 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
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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 1000 Adv Cancer Patients in Denmark (Johnsen, 2013)(Johnsen, 2013)
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Pain
Nause
a
Dyspnoe
a
Lacko
fapp
etite
Depre
ssio
n
Work
anddai
lyac
tiviti
es
Physic
alac
tiviti
es
Fatig
ue
Worr
y
Family
andfri
ends
Concen
tratio
n
Sexua
lity
Had Problem
Helped
Adequate Help
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Is it time for a Treatment Revolution?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 StoriesCancer 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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EvidenceEvidence
1. Clinicians
2. Patients
3. Trial
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Never Very OftenSometimes
0 5 10
Would CS be useful in your clinic?
8
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Poor OutstandingAverage
0 5 10
How would you rate CS overall?
9
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Improvements to CancerStories
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PainFatigueDistressDepressionAnxietyWeight/eatingSleepingFamiliesWorkCaregiversCommunicationComplementary rx
We are multiple
developing 5 minute themes
Improvements to CancerStories