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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.
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E-mail:_____________________________________________________________________
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