• Pan-Europeanpatientsurvey(November2010–August

2011)developedbytheEuropeanFederationofCrohn’s

andulcerativeColitisAssociationstoassessthereal

IMPACTofIBDonpatients’lives,relationshipsandcareers

• Self-selectiononlinesurveyincludingover50questionson

patients’qualityoflife,aswellasthesocial,educational,

employment,andholisticaspectsofIBD

• Surveyintendedtogenerateawarenessandimprove

understandingofIBD

• Over6000completedIMPACTquestionnaires(63%

ofpatientswithCrohn’sdisease;33%ofpatientswith

ulcerativecolitis)from27countries

-Morethan13 000patientswithIBDhavenowtaken

partintheIMPACTandsupportingnationalpatient

associationsurveys(refertoOtherSurveys)

• TheEuropeanFederationofCrohn’sandulcerativeColitis

AssociationsIMPACTsurveyresultsareavailable

(www.efcca.org)

• IMPACTprojectsupportedbyagrantfromAbbott

IMPACT Survey

-

IMPACT – IBD is a progressive disease with significant damage

• 48%ofpatientswithIBDdescribetheirdiseaseasbeing

chronicallyactiveoractivewithperiodicflares

• Hospitaladmissionisextremelyhigh:85%ofpatientswere

hospitalisedwithinthelast5years

• 40%ofpatientshaveundergoneatleastoneoperation

• IBDaresystemicdiseasesassociatedwithco-morbidities:

-49%ofpatientshavejointinvolvement

-34%ofpatientshaveskininvolvement

• IBDhasasignificantIMPACTand

burdenonpatientswhosufferfrom

thesediseases

• IBDarediseasesassociatedwith

progressivedamage

Damage and Disability

IMPACT – IBD causes cumulative damage and disability (flares and disease manifestations)

• 60%ofpatientsexperiencecrampingabdominalpaindue

toflaresmorethan5daysaweek

• 55%ofpatientsexperiencea

suddenuncontrollableurgefor

bowelmovementmorethan5

daysaweek

• 49%ofpatientsconfirmedthat

evenbetweenflarestheirlifewas

affectedinsomewayorsignificantly

Hospital admission

is extremely high:

85% of

patients were hospitalised

within the last 5 years

60% of

patients experience

cramping abdominal pain

due to flares more than 5

days a week

IMPACT on diagnosis and health services

• Mostpatientsreceivedatimelyfinaldiagnosis,but18%

waitedover5years

• Analarmingmajority(64%)neededemergencycarebefore

theirdiagnosis–asignificantclinicalrisk

• Although88%ofpatientshaveaccesstoaspecialist

consultantand45%toaspecialistnurse,24%stillfeel

theydonothaveadequateaccesstospecialists

• Thequalityofcommunicationinconsultationsneedstobe

vastlyimproved–53%ofpatientsfelttheywereunableto

tellthespecialistsomethingthatwasimportant,and65%

saidtheywishedtheywereaskedmoreprobingquestions

Diagnosis and Health Services

The European Federation of Crohn’s and ulcerative Colitis Associations recommends:

• MaintaingoodaccesstoIBDspecialists

• Reviewdiagnosticprotocolsforthosewhowaitovera

yeartoreducethisdivergencewithotherwise

goodstandards

• Investigateandfindmethodstopreventpatient

presentationtoemergencycarebeforediagnosis

• Raiseawarenesswithemergencycarecolleaguesthat

mostpatientswithIBDaretreated

inthisdepartment

• Improveaccess,aswellas

provision,ofspecialistIBD

healthcareprofessionals

• Increasethedurationand

frequencyofspecialist

consultations,andimprove

consultationtechniques(forbothparties)

toensuredepthandcoverageofissues

53% of

patients felt they were

unable to tell the specialist

something that was

important

IMPACT on treatment

• Evidencefortreatmentplan(anti-TNFandsurgery)

• Accesstobiologicaltherapyisbecomingmoreestablished,

butthemajorityofpatientshaveusedcorticosteroids,

experiencedsideeffects,andareconcernedaboutlong-

termeffects(Figure1)

Figure1.Prolongeduseofsteroidsraisesconcernsamong

49%ofusersand42%experiencesideeffectsfromsteroids

Treatment

The European Federation of Crohn’s and ulcerative Colitis Associations recommends:

• MaintainanddevelopgoodIBDhealth-servicestandards,

inlinewithpublishedguidelines–

www.ibdstandards.org.uk

• Highhospitaladmissionrepresentsapoorpatient

experience,anurgentopportunityforimprovement,and

significantmorbidity.Reducingthisburdenmaysomewhat

counterbalancethecostofnewIBDtreatments–it may

pay to treat with innovative therapies

• EnsurethatuseofcorticosteroidsisinlinewithECCO

guidelines,andthatthefullrangeoftreatmentoptionsis

considered,accordingtocomparativerisk–benefitprofiles

28

42

49

52

0 5 10 15 20 25 30 35 40 45 50 55 60

I keep steroids on hand to use as necessary in the event of a flare

I experience side effects from steroids

I am concerned about the long-term effects of steroids on my health

I have used steroids in the past year for my IBD symptoms

Percentage of patients (%)

Overall

IMPACT on daily life

• HalfofpatientsdiagnosedwithIBDarefighting

activediseasetoday–theyarenotinremission

• 96%ofpatientsfeeltired,weakandwornoutindailylife

duringaflare-up;thisonlyreducesto83%

duringremission

The European Federation of Crohn’s and ulcerative Colitis Associations recommends:

• Managementplansshouldincludeassessmentand

managementofthethreekeysymptoms:fatigue,urgency

andpain

• Successcriteriashouldfocusoneffectivemanagementof

symptoms,aswellasIBDastherootcause

• Managementplansshouldincludeassessmentofthewider

symptomaticimpactofIBDoneverydaylife,aswellasthe

clinicalcontext

Daily Life

IMPACT on relationships

• IBDaffectspatients’personalandsocialinteractions

-40%werepreventedfrompursuingan

intimaterelationship

-23%hadanintimate

relationshipenddue

totheirIBD

-29%wereprevented

frommakingorkeeping

friendsduetotheirIBD

96%of

patients feel tired, weak

and worn out in daily life

during a flare-up

• However,39%ofpatientsthoughtthatmeetingothers

withIBDmadethemmoreoptimistic,andnearlytwo-thirds

ofthosewhojoinedapatients’associationfeltithada

beneficialimpactontheirlife(Figure4)

Figure4.Benefitsofpatients’associationmembership

Daily Life

The European Federation of Crohn’s and ulcerative Colitis Associations recommends:

• TheimpactofIBDonrelationships

shouldbeconsideredby

healthcareprofessionals

• Healthcareprofessionals

shouldactivelysignpost

patientstonational

IBDassociations

63%

0%

10%

20%

30%

40%

50%

60%

70%

Patients’ association involvement resultsin improvement in life

Nearly two thirds report membership has improved their life in general

Prop

ortio

n of

pat

ient

s (%

)

40%were

prevented from pursuing

an intimate relationship

52%of

patients were unable

to perform to their full

potential in an educational

setting

IMPACT on education and career

• 52%ofpatientswereunabletoperformtotheir

fullpotentialinaneducationalsetting

• ThemajorityofpeoplewithIBDfeelithasimpactedon

theireducationalperformanceandnegativelyaffectedtheir

incomeandearnings(Figure2)

Figure2.IBDimpactsoneducationandcareer

Education and Career

IMPACT on work productivity correlates with disease severity

• 75%ofpatientshavecancelledorrescheduledan

appointmentduetoIBDflares

• 61%ofpatientsfeelstressedorpressuredabouttaking

timeofffromworkduetoIBD;25%havereceived

complaintsorunfaircommentsand21%havesuffered

discrimination

• 43%ofpatientshadtomakean

adjustmenttotheirworkinglife

(e.g.homeworkingor

flexiblehours)

• Diseaseseverityandabilityto

workseemtocorrelate

27%

15%

0%

5%

10%

15%

20%

25%

30%

> 25 Days From 10 - 25Days

60%66%

48%

0%

10%

20%

30%

40%

50%

60%

70%

IBD hasnegatively

affected careeror incomepotential

Lost a job orhad to quit a

job due to IBD

Negativelyaffected

potential ineducation

Impact of IBD on education and career

Prop

ortio

n of

pat

ient

s (%

)

Prop

ortio

n of

pat

ient

s (%

)

Past year lost working days

• Over40%ofpatientstook10ormoredaysoff

workinthepastyearduetoIBD:27%tookmorethan

25daysoff(Figure3)

Figure3.IBDleadstolostworkingdays

The European Federation of Crohn’s and ulcerative Colitis Associations recommends:

• GoodmanagementofIBDsupportsemployment–

thecostofnewinnovativetreatments

forIBDmaybecounterbalanced

byimprovedemploymentand

reducedsocialcosts

• Effectivemedicalconsultations

shouldaddressthepatient’s

fulllifecontext–includingwork

• Apatient’semploymentand

educationalaspirationsshouldbe

regardedasgoalsandsuccesscriteria

• Flexible,supportive,andnon-discriminatorywork

practicesarerequired–thosewhofacediscrimination

mustbesupportedinchallengingthis

27%

15%

0%

5%

10%

15%

20%

25%

30%

> 25 Days From 10 - 25Days

60%66%

48%

0%

10%

20%

30%

40%

50%

60%

70%

IBD hasnegatively

affected careeror incomepotential

Lost a job orhad to quit a

job due to IBD

Negativelyaffected

potential ineducation

Impact of IBD on education and career

Prop

ortio

n of

pat

ient

s (%

)

Prop

ortio

n of

pat

ient

s (%

)

Past year lost working days 75%of

patients have cancelled

or rescheduled an

appointment due to IBD

flares

Education and Career

Other Surveys

IMPACT findings are supported by data from national patients’ association surveys

Spain (ACCU; GETECCU; GETEII) – 1688 patients

• 25%statedthatIBDgreatlyaffectedtheirworkinglives

• Over3hours’workingtimeislostonaverageperweek

• 20%hadreceivedunjustifiedcomplaintsabouttheir

workperformance

• Almosthalf(45.4%)hadbeenhospitalisedforanaverageof

24days

• 40.2%ofpatientswereexperiencingaflareatthetimeof

thesurvey

Greece (ELIGAST and Crohn’s and ulcerative colitis

patients’ associations of Attica and North Greece) –

1181 patients

• 76%believedthatgreateraccesstospecialised

gastroenterologistswouldhelpimprovetheirIBDhealthcare

• 60%feltsadnessandfrustration,oremotionaltension

(stress)duetotheirdisease

• Approximatelyhalfwerenotsatisfiedwiththeinformation

theyhadinrelationtothediseaseanditsimpactontheir

lives

• Mostpatientsexpressedtheneedformoreinformation

aboutthepossiblecomplicationsofthedisease,including

cancerandsideeffectsofdrugtherapy

• 57%wereabsentfromworkforatleast5daysinthepast

yearduetoIBD

• 37%thoughtthatIBDhadaffectedtheirpersonallives

Crohn’s and Colitis UK survey (Gay M et al. Crohn’s, Colitis

and Employment – from Career Aspirations to Reality.

Hertfordshire: Crohn’s and Colitis UK, 2011) – 1906 patients

• IBDhadasignificantimpactontheworkinglivesandwider

wellbeingofpeoplewiththecondition

-57%hadreducedtheirworkinghoursduetotheirIBD

-79%agreedthatIBDhadaffectedtheirconfidenceand

selfesteem

• IBDaffectspeoplefromcareerstarttoend,impacting

aspirationsandcareerchoicethroughprematureretirement

-51%agreedthatIBDhadimpactedontheir

careerprogression

-50%agreedthatIBDhadpreventedthemfrom

reachingtheirfullpotentialintheworkplace

Ireland

AcampaigntoraiseawarenessofIBD,whichaffectsnearly

20000peopleinIreland,wasrecentlylaunchedbyDrDawn

Harper(generalpractitioner)onbehalfoftheIrishSocietyof

ColitisandCrohn’sdisease.

Other Surveys