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

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

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

What is Ideal Treatment?What is Ideal Treatment?

1. Effective

2. Acceptable

3. Easily accessible (available)

4. Proven (evidence based)

5. Value for money

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

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

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

Cancer StoriesCancer Stories…power of online guided peer support

Overview of CancerStories!

CancerStories is a collection of true life accounts of how real people coped with cancer

Hugh, Prostate Ca

CancerStories is about the person’s own account, what is meaningful to them, how they coped

Virginia, Lung Ca

All patients have kindly given their consent to record their account for the benefit of future patients

Sue, Breast Ca

Patients are interviewed in an informal but professional style and asked to give an honest but informative account about their cancer journey

Tom, Osteosarcoma

Accounts are between 30- 60mins, enough time to tell others what is really important

Louisa, Breast Ca

Patients can share their own accounts with family and friends before deciding to share with the wider community

John, Prostate Ca

Each account is evaluated by a panel of clinicians and also by other patients

Rupen, Lymphoma

Dissemination of CancerStories!

Evaluation of CancerStories!

EvidenceEvidence

1. Clinicians

2. Patients

3. Trial

Never Very OftenSometimes

0 5 10

Would CS be useful in your clinic?

8

Poor OutstandingAverage

0 5 10

How would you rate CS overall?

9

Improvements to CancerStories

PainFatigueDistressDepressionAnxietyWeight/eatingSleepingFamiliesWorkCaregiversCommunicationComplementary rx

We are multiple

developing 5 minute themes

Improvements to CancerStories

Thanks to the patients of

CancerStories!

Want to help? Get in [email protected]