SURVEY ON THE UNMET NEEDS FOR PATIENTS - … · I had symptoms non-related to CRC I had symptoms...

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SURVEY ON THE UNMET NEEDS FOR PATIENTSLIVING WITH METASTATIC COLORECTAL CANCER(MCRC)Thankyoufordecidingtocompletethesurveyontheunmetneedsofpatientslivingwithmetastaticcolorectalcancer(mCRC).Takeyourtimetoanswerallthequestions.Youcansavethesurveyatanytimeandcontinuewhenyouareready.Alternatively,youcanprintthesurveyandcompleteitonpaper.Onceyouaredone,wewouldliketoaskyoutosendittothefollowingaddress:

EuropaColonHQScotsHouseScotsLaneSalisburyWiltshireSP13TRUK

1.0.YOURPROFILE1. Pleasefillinyourinitials:

________2. Whatyearyouwereborn?

________3. Youare:

� Male� Female

4. Wheredoyoulive(country)?_______________________

5. Theplacewhereyouliveisa:� Ruralarea(lessthan2’000inhabitants)� Semi-urbanarea(2’000-50’000inhabitants)� Urbanarea(morethan50’000inhabitants)� Capitalcity

6. Whatisyourmaritalstatus?� Single� Married/livingwithapartner� Divorced� Widowed

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7. Whatisthehighestdegreethatyouhaveearned?Pleasecircleanyqualificationyouhavereceived.� None� Primaryeducation� Secondaryeducation� College� Universityeducation� Post-universityeducation� Idon’tknow

8. Areyou:� Employed� Unemployed� Retired� Unemployedduetoamedicalcondition(i.e.handicapped)� Student/intern� Ihaveanothersituation(pleasename:____________________________________)

9. Doyouhaveotherchronicdisease?� No� Yes(pleasename:_____________________________________________________)

10. Couldyoupleaseprovideuswithsomeinformationaboutyourlifestyle(pleasecheckallthatapplies)?� Iexerciseregularlythreeormoretimesaweekformanyyears� Iexerciseoccasionally(1-2perweek)duringmylifetime� Ineverexercise� Ieathighfiberdiet� Ieatlowfiberdiet� Mydietishighinfat� Mydietislowinfat� Ieatredandprocessedmeatmorethanthreetimesaweek� Inevereatredandprocessedmeat� Ismoke� Idrinkalcohol3-4timesperweek� Idrinkalcohol1-2timesperweek� Ineverdrinkalcohol� Ihaveanormalweight� Iamoverweight

11. Howdidyoufindoutaboutthesurvey?� Throughmydoctor(oncologists,gastroenterologists,surgeon,GP,etc.),(please

namethem:__________________________________________________________)

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� Throughmynurse(pleasenamethem:____________________________________)� Throughlocalpatientorganization(pleasename:____________________________)� Throughtheinternet,social-media(namewhich:____________________________)� Other(pleasename:___________________________________________________)

12. Pleasegiveusthenameofthehospitalwhereyouarebeingtreated:________________________________________________________________________

2.0.YOURILLNESS

2.1.DISCOVERYOFYOURILLNESS1. Whydidyouconsultyourdoctor(morethanoneanswerispossible,pleasemarkallthat

applies)?� Iwentforaroutineexamination� Ihadsymptomsnon-relatedtoCRC� IhadsymptomsrelatedtoCRC� Becauseofpeerpressure� IwasinvitedtoparticipateinCRCscreeningprogram� IwantedtobetestedforCRC� Ihadanemergencyhospitalization

2. Priortoyourinitialdiagnosis,didyouknowwhatthesymptomsofCRCwere?� Yes,Iwasawareofsomeorallofthesymptoms� No,Iwasnotaware� Iamnotsure

3. Whatsymptomsdidyouhavebeforeyouwerediagnosed(morethanoneanswerispossible)?� Diarrhea� Constipation� Alternatingdiarrheaandconstipation� Changeinbowelhabit� Changeinappearanceofstool� Abdominal(stomach)pain� Feltlumpinmystomach� Bloating� Nauseaand/orvomiting� Constanturgetogotothetoilet� Bloodinthestoolordarkstool� Fatigue/Tiredness/Anemia� Breathlessness� Fever

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� Nightsweats� Other(pleasename:___________________________________________________)

4. Howlongdidyouwaitbetweenobservingthefirstsymptomsandconsultingyourphysician?� Lessthanamonth� Between1-3months� Between3-6months� Between6-12months� 1yearormore� Icannotremember

5. Whatdescribesyoubest?� IwasinvitedtoparticipateattheCRCscreeningprogramandthatishowIwas

diagnosed� IwasinvitedtoparticipateattheCRCscreeningprogrambutdecidednottodoso

andwasdiagnosedlater,byachance� AlthoughIam>50yearsoldIwasnotinvitedtoparticipateatcolorectalcancer

screeningprogrambutwouldifIwasinvited� AlthoughIam>50yearsoldIwasnotinvitedtoparticipateatcolorectalcancer

screeningprogrambutwouldnotgoanyway� Iamyoungerthan50years

6. Whenyouwerescreeneddidyouperformatestthataimedtodetectsmallamountofbloodinyourstooli.e.fecaloccultbloodtest(FOBT)(eitherguaiacorimmunochemical)?� Yes� No� Idon’tknowwhatthisis

7. Howquicklydidyouhaveacolonoscopy(afterthefirstconsultationorpositivescreeningtest)?� Upto2weeks� Between2weekstoamonth� Between1-3months� Between3-6months� Between6-12months� Morethanayear� Icannotremember� Ididnothaveone

8. HowsoonwereyoudiagnosedwithCRC(afterthefirstconsultationorpositivescreeningtest)?� Upto2weeks

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� Between2weekstoamonth� Between1-3months� Between3-6months� Between6-12months� Morethanayear� Iamnotsure

9. Beforebeingdiagnosedwithcolorectalcancer,wereyoumisdiagnosedwithanothercondition(suchasirritablebowelsyndrome,hemorrhoids,etc.)� Yes� No

10. Whenwereyouinitiallydiagnosedwithcolorectalcancer?Month__Year____

11. Whichbestdescribesyoursituation?� Iwasinitiallydiagnosedwithstage1,2or3colorectalcancer,anditprogressedto

stage4(advancedormetastaticdisease)colorectalcancer� Iwasfirstdiagnosedwithstage4colorectalcancer� IamnotsureatwhichstageIwasinitiallydiagnosedbutIhavestage4colorectal

cancernow� Noneoftheabove

12. Ifyouwereinitiallydiagnosedwiththediseasethatwaslocalizedinyourintestine(colonorrectum),howlongdidittakefrombeingdiagnosedwithcolorectalcanceruntilbeingdiagnosedwithdiseasethathasspreadtoanotherorgan(i.e.liver,lungs,lymphnodes)?Weeks__Months__Years__

13. Inyourcase,howwouldyouratetheprocessinwhichthediagnosiswasestablished?� Iwasverysatisfied–thediseasewasestablishedquickly� Acceptable–Ihadsomeconsultationsandhadtowaitsometimeforthe

examinationsandestablishingthediagnosis� Notverysatisfying–alotofconsultationsandalotofwaitingbetweenexaminations� Notsatisfiedatall–toomanyconsultationsandwaitingtoolong

14. Whatdoctor(s)orprofessionalshaveyouvisitedinthelast12monthsexclusivelyforcolorectalcancer(pleasemarkallthatapply)?� Generalpractitioner� Gastroenterologist� Oncologist� Surgeon� Radiotherapist� Radiologist� Psychiatrist� Psychologist

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� Nurse� Dietician� Socialworker� Other(pleasename:___________________________________________________)

15. Hasanybodyinyourfamilyeverhadcolorectalcancer?� Yes� No� Idon’tknow

16. Whendiagnosedwithcolorectalcancer,didyouadviseyourimmediatefamilytogoforcolonoscopy?� Yes� No� Ihavenoimmediatefamily

2.2.YOURDIAGNOSIS1. Whatwasyourunderstandingofthediseasebeforethediagnosis?

� Iwaswellinformedoncolorectalcancer� Iknewsomethingaboutcolorectalcancer� Iknewverylittleaboutcolorectalcancer� Iknewnothingaboutcolorectalcancers

2. Whilebeingdiagnosed,didyoureceiveclearexplanationsabout:Thenatureofthedisease yes� no�Theoriginofthedisease yes� no�Theexaminationstobeperformed yes� no�Thelikelyprogressionofthedisease yes� no�Stagesofthediseaseprogression yes� no�Possibletreatments yes� no�Consequencesandsideeffectsoftreatment yes� no�

3. Followingtheannouncementofthedisease,didyouseekfurtherinformation?� Yes� No

4. Ifyes,where(morethanoneanswerispossible,pleasemarkallthatapplies)?� Internet� Healthmagazines� Mygeneralpractitioner/familydoctor� Mypharmacist� Anotherhealthcareprofessional� Patientorganisation� Myfamilyandfriends

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� Othercolorectalcancerpatients� Other(pleasename:___________________________________________________)

2.3.YOURTREATMENT1. Currentlyyouare:

� Waitingforthetreatment� Undergoingtreatment� Finishedwiththetreatmentandnowhavenoevidenceofcancer� Finishedwiththetreatmentbutcancerisstillpresent� Ihavenotundergonetreatmentforcolorectalcancer� Noneoftheabove(explain:______________________________________________

____________________________________________________________________)2. Howlongdidittakebetweenbeingdiagnosedwithcolorectalcancerandstartingwitha

cancertreatment?� Upto2weeks� Between2weeksandamonth� Between1-3months� Between3-6months� Between6-12months� Morethanayear� Icannotremember

3. Wasyourtreatmentplandiscussedbyamulti-disciplinaryteam(MDT)?� Yes,itwasdiscussedbythemulti-disciplinaryteam(MDT)andadoctor/nurse

informedmeoftheoutcome� Yes,itwasdiscussedbythemulti-disciplinaryteam(MDT)butIwasnotinformedof

theoutcome� No,asfarasIamaware,itwasnotdiscussedbythemulti-disciplinaryteam(MDT)� Idon’tknow

4. Overall,doyoufeelthatyourviewswereconsideredwhenyourtreatmentplanwasdeveloped?� Yes� No� Iamnotsure

5. Whenmakingdecisionsontreatmentplan,whatarethemostimportantfactorsforyou(ratewith1beingthemostimportantand5beingtheleastimportant)?� Improvedprognosis� Preservationofqualityoflife� Frequencyofadministration� Financialrestraints

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� Other(pleasename:___________________________________________________)6. Whywouldyoustoptakingthetreatment(ratewith1beingthemostimportantand5

beingtheleastimportant)?� Thetreatmentstoppedworkingforme� Severityofadverseevents(i.e.nausea,vomiting,rash,hair-loss,tiredness,etc.)� Frequencyofadministration� Financialrestraints� Feelingtiredofthetreatment� Other(pleasename:___________________________________________________)

7. Whattreatmentforcolorectalcancerdidyoureceive(morethanoneanswerispossible,pleasemarkallthatapply)?� Surgery� Chemotherapy� Radiotherapy� Personalized/targetedmedicine(suchascetuximab,bevacizumab,panitumumab,

aflibercept,regorafenibandtrifluridine/tipuracil)� Other(suchasimmunotherapyorclinicaltrial)� Iamnotsure� Ididnotreceiveanytreatment

8. Whichchemotherapydrugsdidyoureceive(pleasemarkallthatapply)?� 5-FU� Capecitabine� Oxaliplatin� Irinotecan� FOLFOX(combinationof5-FUandoxaliplatin)� FOLFIRI(combinationof5-FUandirinotecan)� XELOX(combinationofcapecitabineandoxaliplatin)� FOLFOXIRI(combinationof5-FU,oxaliplatinandirinotecan)� Other(pleasename:___________________________________________________)� Idon’tknow

9. Didyoucompleteyourchemotherapytreatment?� Yes� No

10. Ifno,whydidyoustopthechemotherapytreatment(pleaseselectallthatapply)?� Thesideeffectsweretoosevere� Poorqualityoflife� Thetreatmentwasnotworking� Iwasadvisedbymydoctortostopthetreatment� Other(specify:________________________________________________________)

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11. DidyoutakeamoleculartestforRAStesting(KRAS,NRAS)?� Yes� No� Idon’tknow� Idon’tknowwhatthisis.

12. Ifyes,doyouknowtheresultsofthetest?� Yes–itdeterminedthatIwasacandidateforcetuximab/panitumumab� Yes–itdeterminedthatIwasnotacandidateforcetuximab/panitumumab� No,Iwasnotinformedoftheresults� Idon’tknow

13. Didyourtreatmentincludeanyofthefollowingmedicines(pleasemarkallthatapply)?� Cetuximab� Panitumumab� Bevacizumab� Aflibercept� Regorafenib� Trifluridine/tipiracil� None/Idon’tknow

14. Ifnone,doyouknowwhy?� Thesetreatmentsarenotavailableinmycountry� Thesetreatmentsarenotcoveredbymyhealthplan� TestsdeterminedIwasnotacandidateforbiologictreatment� Idon’tknow

15. Wereyougivenclearinformationaboutthesideeffectsofthetreatment?� Yes� No� Iamnotsure

16. Wasthetreatmentyoureceivedthesameasexplainedbyyourhealth-careteam?� Yes� No� Iamnotsure

17. Areyoustillundergoingtreatment?� Yes� No

18. Ifno,pleaseexplainwhy?� Iwasadvisedbymyphysiciantostopthetreatment� Thetreatmentwasnotworking� Thesideeffectsofthetreatmentweretoosevere� Poorqualityoflife

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� Financialconstraints� Other(pleasename:___________________________________________________)

19. Wereyouofferedthechanceofenrolmentonaclinicaltrial?� Yes� No

20. Inwhattypeofhospital,youhavebeentreated?Pleasechooseone:� Publichospital� Privatehospital� Amixtureofboth� Other,pleasespecify� Iamnotsure

21. Ingeneral,howwouldyouratethecarereceivedinyourhospital?� Poor� Fair� Good� Verygood� Excellent

2.4.SUPPORT1. Whoisyourmainsourceofsupport(morethanoneanswerispossible,pleasemarkall

thatapply)?� Mypartner(husband/wife)?� Mychildren� Myparents� Otherfamilymembers� Myfriends� Colleagues� Patientorganisation� Noone� Other

2. Inyourcase,whoisthemostimportant/mostvaluablepointofcontactformedicalinformation?� Myoncologist� Mysurgeon� Mynurse� Other,pleasename____________________________________________________

3. Pleasegradeyourdegreeofsatisfactionoftheemotionalsupportyouhavereceivedfromyour:

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Very

satisfiedSomewhatsatisfied

Neithersatisfiednordissatisfied

Somewhatsatisfied

Verydissatisfied

Notapplicable

Clinicians � � � � � Nurses � � � � � Psychologist � � � � � �Socialworker � � � � � �Other,pleasename:______________________

� � � � � �

4. Inyouropinion,whatwouldimproveyourrelationshipwithyourhealthcareteam(morethanoneanswerispossible,pleasemarkallthatapply):� Beingconsideredavaluedmemberoftheteam.� Sharingthedecisionmaking.� Beingtreatingasanindividual� BeingspoketoinalanguageIcanunderstand-alesstechnicalapproach� Recommendationsabouthowtoimprovemyemotionalfeelings� Helpingmethroughmyupsanddowns� Moreempathy-Iamnotanumber!

5. Inyouropinion,whichofthefollowinginformationisimportantforpeoplewithmetastaticcolorectalcancer(pleasemarkallthatapply)?� Diseaseinformation� Informationaboutthetreatmentoptions� Informationaboutthesideeffectsofthetreatment� Informationabouttheclinicaltrials� Informationaboutthephysician/hospitals/health-centersintheircountry� Informationaboutthepatientsupportgroups� Informationabouttelephonehelplines� Otherinformation(pleasename:_________________________________________)

6. Whatwouldhelppatientswithmetastaticcolorectalcancerinyourcountrythatiscurrentlynotavailable(pleasemarkallthatapply)?� Psychologist� Socialworker� Patientsupportprogram(volunteers)� Talkingtootherpatients(Buddy)� Telephonehelp-line� Internetforum(messageboard)� Dayhospicetomeetotherpatients� Applicationformymobile/tablettohelpmehaveallrelevantdataatoneplace

7. Pleaseratethefollowingstatements:

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Stronglyagree Agree

Neitheragreenordisagree

Disagree Stronglydisagree

Youfeelthatyouweregivenenoughinformationtomakeinformedchoicesaboutyourtreatment

� � � � �

Youweregivenenoughemotionalsupportthroughoutyourtreatment � � � � �Yourfamilymembersweregivenenoughemotionalsupport � � � � �Yourchildrenhavereceivedadequatesupportandhelp � � � � �

8. Haveyoubeengivenenoughinformationandsupporttomanagethesideeffectsofyourtreatment?� Yes� No� Iamnotsure

9. Whoorwhat,doyoufeel,hashelpedyoutocopewithyourtreatment?Couldyoupleaseassignthenumbers1-6toeachoftheanswersbelow,1beingtomostimportantand6beingtheleastimportant.� Myfriendsandfamily� Patientsupportgroup� Myclinician� Psychotherapist� Myprofessionallife� Other,pleasename:____________________________________________________

10. Haveyouencountereddifficulties(i.e.physical,financialorother)duringexaminationsortreatment?� Yes� No

11. Ifyes,whichdifficultiesdidyouencounter?� Youlostyourjob� Youwererequiredtotaketimeoffwork� Youfacedwork-relatedstress� Youfaceddiscriminationatworkbasedonyourillness� Yourincomewasnegativelyaffected� Youfacedseriousfinancialhardship� Youwererequiredtouseyoursavings� Youhadtoborrowmoney

12. Areyouexperiencinganyofthefollowingongoingmedicalsideeffectsofyourtreatment(selectallthatapplies)?� Boweldysfunction(i.e.incontinence)

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� Sexualdysfunction(i.e.erectiledysfunction)� Emotionalsideeffects(i.e.anxietyordepression)� Urologyproblems(i.e.incontinenceorstomaformation)� Peripheralneuropathy(i.e.numbnessinyourfingertips)� Chemobrain(alsoknownasmildcognitiveimpairmentorcognitivedysfunction)� Other,pleasespecify:___________________________________________________� Iamnotsure

3.0.EORTCQLQ-C30

Sinceyourdiagnosis/treatment:NotatAll

ALittle

QuiteaBit

VeryMuch

1. Doyouhaveanytroubledoingstrenuousactivities,likecarryingaheavyshoppingbagorasuitcase? 1 2 3 4

2. Doyouhaveanytroubletakingalongwalk? 1 2 3 4

3. Doyouhaveanytroubletakingashortwalkoutsideofthehouse? 1 2 3 4

4. Doyouneedtostayinbedorachairduringtheday? 1 2 3 4

5. Doyouneedhelpwitheating,dressing,washingyourselforusingthetoilet? 1 2 3 4

Duringthepastweek:NotatAll

ALittle

QuiteaBit

VeryMuch

6. Wereyoulimitedindoingeitheryourworkorotherdailyactivities? 1 2 3 4

7. Wereyoulimitedinpursuingyourhobbiesorotherleisuretimeactivities? 1 2 3 4

8. Wereyoushortofbreath? 1 2 3 4

9. Haveyouhadpain? 1 2 3 4

10. Didyouneedtorest? 1 2 3 4

11. Haveyouhadtroublesleeping? 1 2 3 4

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12. Haveyoufeltweak? 1 2 3 4

13. Haveyoulackedappetite? 1 2 3 4

14. Haveyoufeltnauseated? 1 2 3 4

15. Haveyouvomited? 1 2 3 4

16. Haveyoubeenconstipated? 1 2 3 4

17. Haveyouhaddiarrhea? 1 2 3 4

18. Wereyoutired? 1 2 3 4

19. Didpaininterferewithyourdailyactivities? 1 2 3 4

20. Haveyouhaddifficultyinconcentratingonthings,likereadinganewspaperorwatchingtelevision? 1 2 3 4

21. Didyoufeeltense? 1 2 3 4

22. Didyouworry? 1 2 3 4

23. Didyoufeelirritable? 1 2 3 4

24. Didyoufeeldepressed? 1 2 3 4

25. Haveyouhaddifficultyrememberingthings? 1 2 3 4

26. Hasyourphysicalconditionormedicaltreatmentinterferedwithyourfamilylife? 1 2 3 4

27. Hasyourphysicalconditionormedicaltreatmentinterferedwithyoursocialactivities? 1 2 3 4

28. Hasyourphysicalconditionormedicaltreatmentcausedyoufinancialdifficulties? 1 2 3 4

Forthefollowingquestionspleasecirclethenumberbetween1and7that

bestappliestoyou

29. Howwouldyourateyouroverallhealthduringthepastweek?

1

Verypoor

2 3 4 5 6 7

Excellent

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30. Howwouldyourateyouroverallqualityoflifeduringthepastweek?

1

Verypoor

2 3 4 5 6 7

Excellent

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4.0.EORTCQLQ–C29

Duringthepastweek:NotatAll

ALittle

QuiteaBit

VeryMuch

31. Didyouurinatefrequentlyduringtheday? 1 2 3 4

32. Didyouurinatefrequentlyduringthenight? 1 2 3 4

33. Haveyouhadanyunintentionalrelease(leakage)ofurine? 1 2 3 4

34. Didyouhavepainwhenyouurinated? 1 2 3 4

35. Didyouhaveabdominalpain? 1 2 3 4

36. Didyouhavepaininyourbuttocks/analarea/rectum? 1 2 3 4

37. Didyouhaveabloatedfeelinginyourabdomen? 1 2 3 4

38. Haveyouhadbloodinyourstools? 1 2 3 4

39. Haveyouhadmucusinyourstools? 1 2 3 4

40. Didyouhaveadrymouth? 1 2 3 4

41. Haveyoulosthairasaresultofyourtreatment? 1 2 3 4

42. Haveyouhadproblemswithyoursenseoftaste? 1 2 3 4

43. Wereyouworriedaboutyourhealthinthefuture? 1 2 3 4

44. Haveyouworriedaboutyourweight? 1 2 3 4

45. Haveyoufeltphysicallylessattractiveasaresultofyourdiseaseortreatment? 1 2 3 4

46. Haveyoubeenfeelinglessfeminine/masculineasaresultofyourdiseaseortreatment? 1 2 3 4

47. Haveyoubeendissatisfiedwithyourbody? 1 2 3 4

48. Doyouhaveastomabag(colostomy/ileostomy)(pleasecirclethecorrectanswer)? Yes No

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AnswerthesequestionsONLYIFYOUHAVEASTOMABAG,ifnotpleasecontinuebelow:

NotatAll

ALittle

QuiteaBit

VeryMuch

49. Haveyouhadunintentionalreleaseofgas/flatulencefromyourstomabag? 1 2 3 4

50. Haveyouhadleakageofstoolsfromyourstomabag? 1 2 3 4

51. Haveyouhadsoreskinaroundyourstoma? 1 2 3 4

52. Didfrequentbagchangesoccurduringtheday? 1 2 3 4

53. Didfrequentbagchangesoccurduringthenight? 1 2 3 4

54. Didyoufeelembarrassedbecauseofyourstoma? 1 2 3 4

55. Didyouhaveproblemscaringforyourstoma? 1 2 3 4

AnswerthesequestionsONLYIFYOUDONOTHAVEASTOMABAG:

NotatAll

ALittle

QuiteaBit

VeryMuch

49. Haveyouhadunintentionalreleaseofgas/flatulencefromyourbackpassage? 1 2 3 4

50. Haveyouhadleakageofstoolsfromyourbackpassage? 1 2 3 4

51. Haveyouhadsoreskinaroundyouranalarea? 1 2 3 4

52. Didfrequentbowelmovementsoccurduringtheday? 1 2 3 4

53. Didfrequentbowelmovementsoccurduringthenight? 1 2 3 4

54. Didyoufeelembarrassedbecauseofyourbowelmovement? 1 2 3 4

Duringthepast4weeksNotatAll

ALittle

QuiteaBit

VeryMuch

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Formenonly:

55. Towhatextentwereyouinterestedinsex?1 2 3 4

56. Didyouhavedifficultygettingormaintaininganerection? 1 2 3 4

Forwomenonly:

55. Towhatextentwereyouinterestedinsex?1 2 3 4

56. Didyouhavepainordiscomfortduringintercourse? 1 2 3 4

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Thankyoufortakingpartinthesurvey.Ifyouwouldliketoreceiveinformationonthesurvey,oncepublished(whichweexpectinMarch2018)ortoshareyourstorywithusorbecomeamemberofapatientorganization,pleasefillintheformbelow.

Pleaseleaveusyourdetailssowecancontactyouandmarkallthatapplies:

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