bowel cancer to share information Selina Goodman May 2016 Making a difference Stephen Sutton said I dont see the point in measuring life in terms of time anymore Id rather measure life in terms of making a difference ID: 915547
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Family Web StudyCan online communication from health professionals help families at increased risk of bowel cancer to share information?Selina GoodmanMay 2016
Slide2Making a differenceStephen Sutton said “ I don’t see the point in measuring life in terms of time anymore. I’d rather measure life in terms of making a difference’.Stephen Sutton MBE died aged 19 from colon cancer inMay 2014
Slide3Risk reductionRegular bowel screening by colonoscopyPolypectomyRegular Aspirin reduces cancer incidence.Lifestyle changes: exercise, diet, smoking, obesity.Symptom awareness.
Slide4Family web Study ObjectivesShort term: Find out how information & support could be improved? What other information needed?Is it practical to provide information electronically (e.g. via a website)?Create a website to test this method of sharing information with potential users.
Slide5Family web Study ObjectivesLong term: Investigate if this method means more people at high risk get screening or have testing?Seek adoption in NHS?
Slide6Family web Study Eligibility criteriaAnyone from a family with a known genetic condition giving an increased risk of bowel cancer (e.g. Lynch syndrome)Anyone advised to have regular bowel screening because of their family
history.Anyone whose cancer was due to a genetic vulnerability.
Slide7Family web StudyPhase 1: Anonymous survey (300+) Learn from experiences & opinions of what is helpful. what is acceptable and what people want.Phase 2: Telephone interviews (~20)
Phase 3: Develop website via interactive ‘Think-Aloud’ interviews (~30).
Slide8Family web - website for familiesOnline space for sharing informationWith relativesWith health professionalsAdvice about what information may be neededHow to approach relatives
Slide9Family web - website for familiesInformation resource on:Bowel cancerSurveillance recommendationscolonoscopyInherited cancer syndromes
Slide10NHS Trusts recruitingPlymouth North West Thames ExeterBirminghamCardiff
Slide11NHS Trusts recruitingPlymouth North West ThamesExeterCardiffBirminghamGuy’s HospitalSouthamptonOxford ManchesterTorbayNewcastleBristol
and proposed recruitment sites
Slide12Preliminary results of Phase 1 surveyOnline survey via Survey Monkey web link https://www.surveymonkey.co.uk/r/familywebstudy Lynch Syndrome UK , Bowel Cancer West and Beating Bowel Cancer
websites. 82 people had completed the online survey 60 willing to be interviewed on the telephone.
Slide13Respondents to survey so farPredominantly women ( 67 / 82) Personal history of cancer ( 51 / 82)From across the UK Aged from 20 to 74 V
aried level of education.
Slide14What information received
Slide15Where more information came from
Slide16Slide17O
ther ways of providing information securelyUsing technology to support families and access services
Slide18Family Web Study
Questions?