Counting the Cost of Arthritis - full research report

Resultsfromthe2024ArthritisIrelandCostSurvey2024

Finalreport

Reportpreparedby:

JanSorensen

GintareValentelyte

UnaRósaBirgisdóttir

LauraHammond

ClaireKinneavy

TimO’Sullivan

PeterBoyd

TaraRegan

GrainneO’Leary

October2024

Foreword

Dearreader,

WelcometoArthritisIreland’sFinancialandPersonalBurdenofArthritis2024researchreportonthe personalfinancialcostforindividualslivingwitharthritis.Aftermanyyearsofextensiveplanning, weareexcitedtounveilthefirstevercomprehensiveIrishstudythatdetailsthepersonalfinancial burdenfacedbythoselivingwitharthritis.

ArthritisistheleadingcauseofdisabilityinIreland.Itdamagesjoints,causingseverepain, stiffness,immobility,andevendeformity.Itpreventspeoplefromperformingbasic,everyday tasks—pickingupachild,gettingdressed,holdingdownajob,orsocialisingwithothers.Beyondthephysicalimpact,thereisthehugetollthatarthritiscantakeonpeople’smentalhealth. Manylivingwiththeconditionsaytheyfindithardtogetoutofbedinthemorning,orthatthe relentlesspainexperiencedduringaflareseverelyimpactstheirabilitytocope,affectingnotjust themselves,butalsotheirrelationshipswithfamilyandlovedones.Thisistheharshrealityof livingwitharthritis.

Forindividualslivingwitharthritis,accessingessentialhealthcareservices,takingprescribed medications,andutilisingsupportserviceslikephysiotherapyandoccupationaltherapyarenecessities,notluxuries.Thesemeasuresarecrucialformanagingtheircondition,preventingfurther damage,andreducingflare-ups.However,asthisreporthighlights,manypeoplewitharthritis mustcoverthesenecessaryexpensesoutoftheirownpersonalfinances,evenwhentheirillness preventsthemfromworkingorpursuingcareersonafull-timebasis.Indeed,manyareforcedto withdrawfromemploymentduetotheseverityoftheircondition.

Thisresearchstudyhasshownthatindividualswitharthritisincursubstantialpersonalcosts, bothemotionallyandfinancially,inmanagingtheircondition.Asasociety,wemustdomoreto supportthoselivingwiththisdebilitatingdisease,alleviatingtheirfinancialburdenandmaking theirdailyliveslesschallenging.

Wearedeeplygratefultoeveryonewhocompletedthesurveyandparticipatedinthisvaluable research.Wealsoextendourheartfeltthankstothosewhoco-developedthesurveyandcontributed tothefindingsinthisreport.Additionally,wewouldliketothankoursponsorsandtheresearch teamatRCSISchoolofPopulationHealth,withoutwhomthisresearchwouldnothavebeenpossible.

Over1,600peopletookpartinthissurvey,underscoringthestrongdesireamongthoseliving witharthritistosharetheirexperiences.Manyparticipantsprovidedpersonalcommentsabout theirsituations,whicharebothstarkandcompelling.Weencourageyoutoreadthesecomments attheendofthisreport.Theoverwhelmingresponseandinputclearlyshowthattheseindividuals wanttheirvoicestobeheardandforotherstounderstandthepersonalsacrificesthattheyand theirlovedonesmaketoimprovetheirhealth,wellbeing,anddiseasemanagement.Membersof thearthritiscommunityhaveexpressedtheirfrustrationthattheirconditionisoftenhiddenand cloudedbymyths.Theyareeagertobringtherealityoflivingwitharthritisintotheopen.

Weunderstandthatchangeisagradualprocess.However,therealityisthatthenumberof peoplelivingwitharthritisinIrelandissettoincreaseinthecomingyears.Bytakingpractical andmeasuredstepsnowtoalleviatethefinancialburdenonthoseaffected,wecanimprovehealth outcomesandsignificantlyreducetheirfinancialstrain.Itistimeforourpoliticalleadersand policymakerstorisetothechallengeandaddresstheseissuesdirectly.

Wewillnotrestuntilthevoicesofourcommunityareheardandtheirburdeniseased.

TimO’Sullivan Chair

GráinneO’Leary ChiefExecutive

ListofTables

1 Mainfindings

Thisreportsummarisesthepersonalexpensesrelatedtoarthritis.WeconductedanonlinequestionnairesurveyforpeoplewhoareaffiliatedwithArthritisIreland-theIrishpatientorganisationfor peoplelivingwitharthritis.Morethan1600individualsfromthenetworktookpartandprovided informationabouttheirpersonalcircumstances,currenthealthstatusandpersonalexpensesfor healthcareservices,medicationandmedicalproducts,assistance,andhelpathomerelatedtotheir disease.Thisreportanalysesthedatafromthequestionnaireanddescribesthepersonalburdenof arthritisonpatientsandtheirfamilies.

Whenwerefertoarthritisinthisreport,wemeanagroupofdiseaseswithinthebroaderdefinitionofrheumaticandmusculoskeletaldiseasesandnotjusttheclinicallydefineddiseasessuchas rheumatoidarthritis,osteoarthritis,orpsoriaticarthritis.Whenwerefertopersonalexpenses,we meanthemoneythatpeoplewitharthritispersonallyhavepaidtoreceivehealthcareservicesand otherformsofcareandsupport.

1.1 Respondents

Theonlinequestionnairewascompletedby1612individualsacrossIreland.

• 85%werefemale,14%weremale

• Themeanagewas60years.35%wereunder55yearsofage,31%wereagedbetween55and 64years,24%wereaged65-74years,andalmost10%wereaged75yearsorolder

• Onaverage,respondentshadbeenlivingwitharthritisfor12years.Femalerespondentshad beenlivingwitharthritisforlongerthanmalerespondents.Olderrespondentshadbeenliving witharthritisforlongerthanyoungerrespondents

• Morethanhalfoftherespondentshadthirdleveleducationandaquarterhadsecondlevel education.Alargegroupofrespondentshadcompletedotherformsofeducation

• Athirdofrespondentshadrheumatoidarthritis,30%hadosteoarthritisand13%hadpsoriatic arthritis.Theremainingrespondentshadotherdiseasesrelatedtoarthritis

• Almost40%ofrespondentshadnootherhealthconditions.23%ofallrespondentsreported havinghypertension,14%hadalungdisease,11%hadamentalhealthcondition,and40% reportedashavingotherdiseases

• Athirdoftherespondentshadmedicalcards,23%hadGPcards,and73%wereregistered withaDrugPaymentScheme

• 70%ofrespondentshadprivatehealthinsurance

• 46%ofrespondentshadalifeinsurancepolicy

1.2 Healthstatus

Wecomparedthehealthstatusoftherespondentswiththehealthstatusofrespondentsinthe nationalHealthyIreland2021-2023surveys.Thehealthimpactofrespondentslivingwitharthritis wasconsiderablyworsecomparedtothehealthstatusofthegeneralpopulation:

• 55%ofrespondentswitharthritisreportedhavingpoororfairhealth.Thiscomparesto2.5% ofthegeneralpopulation.45%ofrespondentsreportedhavinggood,verygood,orexcellent health.Thiscomparesto97.5%ofthegeneralpopulation

• Sleepinterruptionswereacommonfeature.Nearly20%ofrespondentsreportedthatarthritis severelyimpactedontheirsleepingpatterns.40%and28%ofrespondentsreportedtheyhad occasionalorslightproblemswithsleep.Just11%indicatedthattheyhavenosleepproblems duetotheirarthritis

• 70%ofrespondentsreportedhavingproblemswithmobility.97%reportedproblemswith painanddiscomfort,80%reportedproblemswithusualactivity,65%reportedproblemswith anxietyanddepressionand35%reportedproblemswithself-care

• Onascaleof0to1,where1indicatesperfecthealthand0death,themeanscoreamong respondentswas0.58(95%CI0.567,0.599).Thisissubstantiallyworsecomparedtothegeneral populationwhohavereportedmeanscoresabove0.90

• Onthisscale,femalerespondentsreportedashavingworsehealthstatus(0.574(95%CI0.557, 0.592)comparedtomalerespondents(0.644(95%CI0.606,0.681)

• Youngerrespondentsaged35-44yearsreportedabetterhealthstatusscore(0.608(95%CI 0.557,0.681)thantheolderrespondentsaged75yearsandolder(0.546(95%CI0.491,0.602))

• Respondentswithprimaryandsecondleveleducationreportedworsehealthscoresthanrespondentswiththirdleveleducation,althoughthedifferencewasnotstatisticallysignificant afteradjustmentforsexandage

• Respondentswithpoorgeneralhealthstatusreportedtheworstscores0.304(95%CI0.264, 0.344).Respondentswithverygoodorexcellentgeneralhealthstatusreportedthebestscore 0.767(95%CI0.732,0.803)

• ’Respondentswhohadbeendiagnosedforalongerperiodhadlowerhealthstatusscores (0.559(95%CI0.533,0.584))comparedtothosewhohadbeendiagnosedforlessthantwo years(0.628(95%CI0.581,0.675))

1.3 Useofhealthcareservices

Thequestionnaireaskedtherespondentsabouttheiruseofhealthcareservicesrelatedtotheir arthritisdiagnosis.1107respondentsansweredthispartofthequestionnaire.Basedontheanalysis, inthelast12monthsrespondents:

• Hadanaverageof27visitstoahealthcareprovider

• Femalerespondentshadmorevisitstohealthcareprovidersthanmalerespondents(28visits vs22visits)

• Hadanaverageof5.7GPvisits(amongrespondentswhoattendedtheirGP)

• 8.8%oftherespondentshadbeenhospitalised

• Amongrespondentswhowerehospitalised,theaveragenumberofadmissionswas1.6and onaveragetheyspent2.7daysinhospital

1.4 Personalexpenses

Theanalysisofpersonalexpensesshowedthatinthelast12months:

• Arthritisimposedameanpersonalexpenseof €3538perrespondent

• Morethanhalfoftheseexpenses(55%or €1980)wererelatedtopersonalexpensesforhealthcareservices

• 20%or €975relatedtopersonalexpensesrelatedtomedicationandrelatedmedicalproducts

• 14%or €478relatedtopersonalexpensesforrequiredassistanceduetoarthritis

• Asmallproportionofrespondents(7%)indicatedasreceivinghelpathomeandthepersonal expensesofsuchhelpamountedto €105perperson

1.5 Employmentstatus

Respondentsindicatedtheircurrentemploymentstatus.

• 58%ofrespondentsagedunder65yearswereinactiveemployment,and31%hadretired eithervoluntarilyorduetoarthritis

• Amongtherespondentsinemployment,63%wereinfull-timeemploymentand37%werein part-timeemployment

• Amongthoseemployedpart-time,60%reportedthatarthritiswasthereasonfortheirparttimeemploymentstatus

• 70%ofrespondentsincurrentemploymentindicatedthattheyhadexperiencedalossof €3111 inannualincomeduetoarthritis

1.6 Helpathome

Asmallproportionofrespondents(116of893,7.2%)indicatedthattheyhadreceivedhelpathome relatedtoarthritisduringthelast12months.

• 10%ofrespondentsindicatedthattheyreceivedhelpathomepaidforbythestateorlocal government.Thisgroupreceivedonaverage143hoursofstateorlocalgovernment-funded help

• 43%ofrespondentsindicatedthattheyhadpaidforprivatehelpathome.Thisgroupreceived onaverage319hoursofself-fundedhelpathome

• Respondentswhoindicatedthattheyreceivedhelpathome,receivedanaverageof734hours ofunpaidinformalhelpfromspouse/partner,children,relatives,friends/neighbours

1.7 Timespentonhealthcareandtransport

Inadditiontotheirpersonalexpenses,respondentswerealsoaskedtoindicatetheaveragetime theyspentavailingofhealthcareservicesandthetimetheyusedfortransportfromtheirhometo thehealthcareproviders(andback)inthelast12months.

• Onaverage,eachrespondentspent105hoursavailingofhealthcareservices

• Respondentswithpoorhealthstatusspentonaverage156hoursonvisitstohealthcare providers,comparedtorespondentswithexcellenthealthwhospentonaverage60hours

• Respondentslivinginruralareasspentonaverage30%moretimeathealthcareservicevisits andtravellingtoandfromthesevisitsthanthoselivinginurbanareas

2 Background

Forpeoplelivingwithadiseaseandillhealth,thereislimitedevidencereportingontheassociated personalcostburdentotheindividual.Furthermore,itisnotwellunderstoodwhoisbearingthese privatecostsandtheextentofindividualexpenses.Suchprivateexpensesmayrelatetoparticular healthproblemsandpersonalcircumstances.Thisisthefirsttimepersonalcostsandtheburden relatedtoarthritisinIrelandhavebeencapturedandreported.

TheprivatecoststoindividualshasbeenexploredforpeoplelivingwithcancerinIreland.In theirrecentreport1,theIrishCancerSocietyhaveestimatedthattheaverageadditionalcostforpeoplelivingwithcancerismorethan €756permonth,whichincludespersonalcostsformedication, hospitalisationandprivatephysiotherapyservices.Thisreportalsohighlightedthatpeopleliving withcancermayexperienceasubstantialreductioninincomeandchangeintheiremployment statusasadirectconsequenceofcancer.

AreportanalysedthehealthcarecostsrelatedtoosteoarthritisandrheumatoidarthritisforIrish peopleaged50yearsandolder2 in2013.ThisreportedtheuseofGPandhospitalservicesover 12monthsbasedondatafrom8000respondentsfromtheTheIrishLongitudinalStudyonAgeing (TILDA)survey.TheyestimatedthevariationinGeneralPractitioner(GP)contacts,outpatientand A&Edepartments,andinpatientadmissionsforpeopleacrossdifferentagegroups,sex,educationandhealthstatus.However,theircostanalysistooktheperspectiveofthehealthcareservices provideranddidnotconsidertheprivateandpersonalexpensesofeachrespondent.

AstudyconductedinGermany3 estimatedthedirectcostsrelatedtorheumatoidarthritisby consideringthepatientperspective.Thisstudywasbasedondatafromaclinicaltrialandacost questionnairethatwasadministeredquarterly.Inthisquestionnairerespondentsonlyreportedon theirhealthcareutilisationrelatedtoarthritis.Theresultsreportedwerespecifictonon-physician serviceutilisation,medication,devicesandaids.Theyfoundthatin2005ameanyearlyassociated costwas €417perrespondent,withnearlyhalfofthiscostrelatedtophysiotherapyandrelated services,24%tomedication,9%tophysiciansand14%totransportation.Only1%oftheaverage costswererelatedtodevicesandaids.However,itisdifficulttogeneralisetheseresultstoabroader (andIrish)population,duetothenatureoftheidentificationofrespondentsinthisstudy.

Personalcostsareimportantbecausetheycanimpacthowpatientsapproachandadhereto

1IrishCancerSociety,TheRealCostofCancer.ResearchconductedbyKantar2019

2E.Doherty,C.O’Neill,Estimatingthehealth-careusageassociatedwithosteoarthritisandrheumatoidarthritisinan olderadultpopulationinIreland.JournalofPublicHealth|Vol.36,No.3,pp.504–510,2013

3JLHülsemann,TMittendorf,SMerkesdal,SZeh,SHandelmann,J-MvonderSchulenburg,HZeidler,JRuofAnn RheumDis2005;64:1456–1461

clinicaltreatmentandrehabilitationservices.Arecentreviewofout-of-pocketstudiesfocusing onrheumatoidarthritis4 identifiedonlysixrelevantresearchstudiesreportingonpatients’private costs.Theyalsodemonstratealackofequityforthoselivingwitharthritisduetothesignificant financialburdenthattheymustbearduetotheircondition.Thissuggeststhattheresearchevidence inthisarearemainslargelylimited.

Againstthisbackground,ArthritisIrelandapproachedtheRCSIHealthcareOutcomeResearch Centretoexploretheopportunitiesofanalysingpersonalcostsrelatedtoarthritis.Afteracareful planningphase,whichincludedseekingformalapprovalfromtheRCSI’sEthicalCommittee,a questionnairewasco-designedwithpatientrepresentativesandstafffromArthritisIreland.We administeredtheonlinequestionnaireamongmembersoftheArthritisIreland’snetwork.

Thisreportdocumentstheresultsfromtheonlinearthritiscostquestionnaire.Basedonthe responses,wehaveanalysedwhohasrespondedtothequestionnaire,theirhealthstatusandwellbeing,useofhealthcareservices,personalexpensesforobtaininghealthcareservices,employment consequences,useofpaidandunpaidhomehelp,andthetimespentathealthcarevisitsincluding transportationtimetoandfromhealthcareproviders.

4ParvanehHeidari,WendyCross,KimberleyCrawford.Doout-of-pocketcostsaffectmedicationadherenceinadults withrheumatoidarthritis?Asystematicreview.SeminArthritisRheum.2018Aug;48(1):12-21

3 Methodology

Thisreportisbasedoninformationcollectedfromanonlinequestionnairewhichwascompletedby peoplelivingwitharthritisinIreland.Respondentswereinvitedtotakepartintheonlinesurvey throughdirectemailinvitationsfromArthritisIrelandorthroughtheirnewslettersandsocialmedia platforms.

Whenwerefertoarthritisinthisreport,thisrepresentsabroadgroupofdiseaseswithinthe broadergroupofrheumaticandmusculoskeletaldiseasesandnotjustclearlydefineddiagnoses suchasrheumatoidarthritis,osteoarthritis,orpsoriaticarthritis.Table3.1showsthedifferent conditionswehaveincludedinthequestionnaireandtheabbreviationsusedthroughoutthetext andtables.

Table3.1: Rheumaticandmusculoskeletaldiseasesincludedinthesurveyandtheirabbreviations

ConditionAbbreviation

GoutGout

RheumatoidarthritisRA

OsteoarthritisOA

PsoriaticarthritisPsA

JuvenileidiopathicarthritisJIA

Sjögren’ssyndromeSjögren’s AxialspondyloarthritisAxSpa

FibromyalgiaFibro

PolymyalgiarheumaticaPolymyalgia

Raynaud’sRaynaud’s Lupus(SLE)Lupus

SclerodermaScleroderma

DownsyndromeassociatedarthritisDA

3.1 Personalexpensesrelatedtoarthritis

Thecostanalysisfocusesonthepersonalcostrelatedtoarthritis.Thisisdifferentfrommanyother costanalyseswhichusuallyfocusonthehealthcareprovidedandfundedbythehealthcaresystem suchastheHealthServicesExecutive(HSE)orhealthinsurers.Similarly,personalcostsarerarely

includedinHealthTechnologyAssessmentsoreconomicevaluationswheretheanalysestendtofocusonthecostsforthehealthcareservicesonlyanddisregardthepersonalexpensesofindividuals. Theconcernisthatinadditiontothehealthcarecostsfundedbypublicorprivatehealthfunding bodies,peoplelivingwitharthritisbearaconsiderablefinancialburdenrelatedtotheircondition. Forexample,privatepaymentoccursforvisitstogeneralpractitioners(GPs)andpurchaseofprescriptionandover-the-countermedications.Inaddition,duetotheircondition,somepeoplemay needtopayprivatelyforadditionalsupportsuchasphysiotherapy,helpintheirhome,andadaptationsoftheirhome.Peoplewitharthritismayneedtospendasignificantamountofmoneyand timeontransportationtohealthcareprovidersinadditiontotheirfinancialoutlays.Suchcostsrelatedtothetimeandexpenseoftransportationtohealthcareprovidersaretypicallybornebythe individualswhoneedthehealthcareservice.

3.2 Co-designofonlinecostquestionnaire

IdentificationofpersonalexpensesischallengingandveryfewguidelinesandexamplesareavailableinanIrishcontext.However,themethodologyforanalysingcostsiswell-definedandinvolves differentphasesincludingidentificationofrelevantcostitems,measurement,andvaluationofthe mostrelevantcomponents.

Fromtheoutsetofthisstudy,itwasclearthatinformationonpersonalexpensesrelatedtoarthritisshouldbeobtainedfrompeoplewhohavepersonalexperiencesandlivewitharthritis.Arthritis Irelandconvenedagroupofpeoplelivingwitharthritis,peoplewithprofessionalexperiencewith arthritis,andeconomicresearcherstoco-designthecostquestionnaire.Atfirst,thegroupmettoset thesceneandbrainstormawiderangeofpotentiallyrelevantcostitems.Insubsequentmeetings, draftversionsofthequestionnairewerediscussedandadjustedinlinewithrecommendationsfrom thegroup.Thecostquestionnairewasfirstpilotedbyasmallgroupofpeoplelivingwitharthritis andlaterbyalargergroupofpatientadvisersassociatedwithArthritisIreland.

Thefinalversionofthequestionnaire(availableinAppendix)explaineditspurposetotherespondentsandspecifiedthatthesurveywasanonymousandparticipationvoluntary.Tocomplete thequestionnaire,respondentswereaskedtoconsenttoparticipateandtoallowtheirinformation tobeusedforresearchpurposes.

Othersectionsofthequestionnaireincluded:

• Informationabouttherespondents:yearofbirth,gender,thefirstthreelettersoftheirpostcode,andeducationlevel

• Informationaboutrheumaticandmusculoskeletalandotherrelatedconditions

• Generalhealthandwellbeing:generalhealthbasedonfivecategoriesrangingfrompoorto excellenthealth,aquestiononrespondents’qualityofsleep,andahealthstatusmeasure basedontheEQ-5Dinstrumentwhichincludedquestionsacrossfivedimensions:mobility, self-care,usualactivities,painanddiscomfort,anxietyanddepression.Eachdimensionis describedinfivelevelsrangingfromnoproblemstoextremeproblems

• Healthcareserviceuse:basedon28healthserviceproviders,respondentswereaskedtoindicatehowmanytimesduringthelast12monthstheyusedtheseservices.Additionally,time spentattheappointment,transporttimeandtotalamountpaidfortheseserviceswerecaptured.Theamountofmoneyspentonmedicationandothermedicinalproductsduringthe last12monthswasalsocollected

• RespondentswerealsoaskedaboutthefinancialsupportforhealthcaresuchasGPandmedicalcards,anddrugpaymentschemes.Further,theywereaskediftheyhaveprivatehealth insuranceandlifeinsurance

• Mobilityandassistance:respondentswereaskedaboutmobilityandassistancetheyhadreceivedduringthelast12months,howmuchtheypaidforthesethemselves,andhowmuch waspubliclyfunded

• Helpathome:respondentswereaskediftheyhadreceivedanyhelpathomerelatingto theirarthritiscondition.Onlypeoplewhoreceivedhelpathomewereaskedmoredetailed questionsaboutthenatureofthishelp

• Abilitytowork:respondentswereaskedabouttheircurrentemploymentsituation,weekly hoursworked,theimpactofarthritisontherespondent’sabilitytoworkandonotheractivities,themainsourceofincome,andthelevelofincome

• Transport:respondentswereaskedaboutdifferenttypesoftransporttheyusedwhenattendingappointmentswiththeirhealthcareproviders.Additionally,respondentswereaskedabout theamountoftimetheyspenttravellingtotheirappointments

Finally,respondentsweregivenafreetextopportunitytodescribeanyadditionalexpenses relatedtotheirarthritisconditiontheyhadspentmoneyoninthelast12months,whichhadnot beenspecificallyaskedaboutinthesurveyandtoprovideotheradditionalcomments.

3.3 Questionnaireadministration

ThesurveywasadministeredusingSmartsurvey,anonlinesurveyandquestionnairetool.Itwas promotedtopotentialrespondentsthroughtwochannels:emailssenttotheArthritisIrelandnetworkandpostssharedonArthritisIreland’ssocialmediaplatforms.Datacollectioncommenced onMay20th,2024,withaninitialemailsentto13,406recipients,containingauniqueQRcodefor surveyparticipation.Tworeminderemails,featuringthesameQRcode,weresubsequentlysenton June11thandJune21st.

Thesurveywasdistributedonthefollowingsocialmediaplatforms,usingaQRcodedifferent fromtheoneusedintheemail.

• X–7posts

• Instagram-6posts+1storyshare

• LinkedIn–4posts

• Facebook-9posts

• ArthritisIrelandFacebooksupportgroup–2posts

WhenthesurveyclosedonJuly4th,2024,therewere877completeand570incompleteresponses originatingfromtheemailrecruitment,and151completeand127incompleteresponsesfromthe socialmediaplatforms.

Themedianresponsetimewas17minutes,thoughtherewasconsiderablevariationinhowlong respondentstooktocompletethesurvey.

3.4 Datapreparation

Thequestionnairewascompletedanonymouslyandthereforethesameindividualsmayhavecompleteditmorethanonce.Topreventhavingseveralresponsesfromthesamerespondent,we identifiedresponsesfromindividualswithsimilargender,yearofbirthandpostcodesasresponses fromthesameperson.Fromthis,weusedthefirstcompleteresponseandincludedthisinthe analysis.Ifearlierpartialresponseswereavailableaswellasacompleteresponse,weusedthe completeresponseandexcludedthepartialresponsesfromanalysis.

Somerespondentsgaveconsenttotakepartinthesurveybutdidnotcompletethefullsurvey. Weonlyincludedvalidresponsesandidentifiedallmissinginformation.

Forsomequestionswithan’other’category,respondentshadanoptiontoprovidetextbasedresponsese.g.education,arthritisandotherrelatedconditions.Allfreetextresponseswerereviewed andincludedincategorieswherepossiblebyadataanalyst.Ifsomeresponsesweredifficultto categorise,theseweremaintainedinthe’other’category.

InAppendixAweprovidetheresponsestotwofreetextquestionsfromthequestionnaire. Someresponseswereeditedforclaritytosecureanonymityanddisguisereferencetoanyparticular individuals.

3.5 Analyticalmethods

Thedatafromtheonlinequestionnairewasanalysedusingdescriptivemethods,andwhereappropriate,meandifferencesacrosssomegroupswereestimatedusingregressionanalysis.Amore detailedexplanationofthesemethodsissummarisedbelow.

Descriptiveinformationwasorganisedintomeaningfulcategories.Formostanalyses,respondentagewascategorisedinto10-yearagegroups,andfortheanalysisofemploymentdatawe

categorisedageintotwogroups:below65andover65years.Wecategorisedthedurationofarthritisdiagnosisintomeaningfulgroupsconsistingof:lessthan2years,2-5years,6-10yearsandover 10years.

Oneofthemainchallengesrelatedtotheidentificationofdifferentformsofrheumaticand musculoskeletaldisorders.Respondentscouldselectfrom13differenttypesofdiseaseswhere theycouldindicateasmanyaswereapplicable.Withthesedata,wewereabletoidentifymore than150combinationsofrheumaticandmusculoskeletaldiseases.Withconsultationfromourcodesigners,weagreedonameaningfulwayofcategorisingthesediseases.Forthefinalanalysis,the diseaseswereorderedaccordingtofrequentdiseaseswithandwithoutcombination.Rheumaticand musculoskeletaldisordersaredescribedacross26separatecategoriesexcludingan"other"category and"nodiseasereported"category.Followingdiscussionsamongtheauthorgroupandadvicefrom independentseniorresearchers,wedecidednottoreportonasmallnumberofrespondentsasa waytomaintaintheiranonymity.Thiswassupportedbythefactthatallrespondentsconsentedto theuseoftheiranonymousdata,andthat-inprinciple-itshouldnotbepossibletoidentifyany individualrespondents.However,thereisapossibilitythatsomerespondentsmaystillbeableto identifytheirresponsesacrosssomeofthereportedresultsinthisreport.

Inthesectionaboutfinancialsupport,several"Yes"/"No"questionswereaskede.g.doesthe respondenthaveaGPcard.Intheseanalyses,weincludedresponsestothesetwovalidresponses only,andallotherresponsesincludingmissinganswerswereexcludedfromtheanalysis.Thisis importantwheninterpretingtheseresults,astheresultsarespecifictotheproportionofrespondents whoprovidedavalidanswerandnottoallrespondents.

Similarprincipleswereappliedintheanalysisofgeneralhealthandwellbeing,wherewereportedacrossdifferentcategoriesofhealthstatusandcomparedgeneralhealthstatusacrossage categories.

Forthehealthcarecostanalysis,weconsideredrespondentswithvalidresponsestobethose whoreportedatleastonevisittoanyofthe28healthcareproviders.Foreachserviceprovider,we countedthenumberofusersasthosewithatleastonevisit,andtheproportionofusersinrelation tothepopulationwithvalidhealthcarecostresponses.Forthegroupofusers,weestimatethemean numberofvisits,meantimeinminutesspentonallvisits,andthemeancost(€).

Somerespondentsdidnotrespondtoquestionsaboutthetimespentforeachvisit.Toallowus tocalculatethetotaltimespentwitheachparticularcareprovider,wereplacedthemissingvalues withthemeanvalueofrespondentswhohadcompletedthesequestions.

Inordertoassessthecost,ifarespondentdidnotincludeanexpenseforaspecifiedvisit, weassumedthattheydidnotincuranypersonalcostsforthisservice.Inthiscase,weexpected expensestorelatetoGPservicesanddirecthospitalcontactssuchasA&Evisitsandhospital admissions.

Similarly,wereportedothercostsrelatedtomedicationandpersonalexpensesrelatedtoarthritis,homeadaptationsandmedicalappliances,andexpensesforhelpinthehome.

Wereportedthecostofthevariouscomponentsasthemeancostforallrespondentswhocompletedthecostquestionnaire.Someofthesecostsarelowerthanthecostsdescribedabovebecause

thedenominatoristhefullpopulation,ratherthanonlytherespondentswhohaveusedtheindicatedservices.

Wefurtheranalysethevariationofthehealthcarecostsbyage,durationwitharthritisandhealth statuscategories.Thereportedmeancostisadjustedforageandsex.

Foremployment,weconductedadescriptiveanalysisofthecurrentworksituation.Forrespondentsinpaidemployment,weanalysedtheirweeklyworkhours,income,andreportedincome lossasaconsequenceofarthritis.Wefurtheranalysedthereportedimpactofarthritisonworkand regulardailyactivities.

Helpathomewasanalysedforrespondentswhoindicatedthattheyhaveavailedofhelpat home.Thisisarelativelysmallproportionofthewholegroupofrespondents,whichweanalyse descriptively.

Acrosseachsection,thefirsttablereportsthenatureoftherawdata.Thisallowsassessments ofthenumberofrespondentsandthenumberofmissingresponses.Infollow-upanalyses,we estimatedthemeanvaluesfortheentirerelevantgroupofrespondents.Throughoutthereport,we haveidentifiedthegroupofrespondentswhohaveprovidedsomedataoneachsection,andwe reportthemeanvaluesforthisgroupofrespondentsandnotforallrespondents.Thisisimportant wheninterpretingtheestimatedmeanfigures.

Toindicatethestatisticalvariationinthedatawehavereportedeitherthestandarddeviation (SD)orthe95%confidenceinterval.SDisacommonmeasurewhenreportingmeans.Ahigh numberrelativetothemeanindicateslargevariation.Inthesubgroupanalyses,wereportmean and95%confidenceintervalsinsteadofparticularstatisticaltests(t-testorANOVA).Theconfidence intervalindicatestherangeofthetruevalueofthemeanwith95%probability.Confidenceintervals areusedbecausethestudyrecruitedonlyasmallsampleoftheoverallpopulation,sobyhavingan upperandlowerconfidencelimit,itispossibletoinferthatthetruepopulationvalueliesbetween thesetwopoints.Inotherwords,itrepresentshowgoodwethinkourestimateis.Ifyouconstruct aconfidenceintervalwitha95%confidencelevel,itmeansthatyouareconfidentthat95outof100 timestheestimatewillfallbetweentheupperandlowervaluesspecifiedbytheconfidenceinterval.

Despitesomeguidelinessuggestingtheuseofalternativemeasuresduetotheskewednature ofthereportedcostdata,wehaveusedthestandardparametricmethodstocalculateconfidence intervals,giventherelativelylargesampleofresponsesfromthequestionnaire.

Weestimatedthestandardisedgroupmeandifferencesusingordinaryleastregressionorlogisticregressionanalyses,adjustingforsex,age,andothercategoricalvariables.Anystatistical differencesbetweengroupswerecapturedusingap-valuemeasure.Ap-valuerepresentshow likelythedifferencebetweengroupsisduetochance.Ap-valuelowerthan0.05indicatesthatthe differenceisstatisticallysignificant,withvaluesabove0.05indicatingnostatisticalsignificantdifferences.Duetothecross-sectionalnatureofthedataanalysed,limitednumberofrespondentsin eachsubgroup,andsometimesalargeproportionofrespondentswithnoorlowhealthcareservice use,theexplanatorypoweroftheregressionmodelsisnotparticularlyhigh(indicatedbyalow R2).Despitetheseprecautions,theregressionmodelsaresufficientlyrobusttoindicatenoticeable patternsinthedata.

4 Results

4.1 Respondents

Thissectiondescribesthesurveyrespondentswhoprovidedinformationabouttheiryearofbirth, sex,yearoftheirfirstarthritisdiagnosis,thefirstthreeletters/numbersoftheirpostcodeandtheir levelofeducationortraining.

4.1.1 Demographics

Table4.1describesthesurveyrespondents.85%werefemaleand14%weremale.Asmallproportionofrespondentsindicatedasbeing"Nonbinary"orpreferrednottosay(n=14).Theageof respondentsrangedfrom18to92yearswiththemedianageof60years.Thefemalerespondents weresignificantlyyoungerthanthemalerespondents(58vs61years,p=0.003).Therewereno statisticallysignificantgenderdifferencesacrossthe10-yearagecategories(p=0.181).

ThegeographicaldistributionofrespondentsisshowninFigure4.1.AquarteroftherespondentswerefromDublin,buttherewasagoodrepresentationofrespondentsacrossmostIrish counties.

Respondentshadreceivedthefirstarthritisdiagnosisbetweenoneand68years,with9yearsas themedianduration.Therewasnodifferencebetweenfemalesandmales(p=0.410)althoughmore respondentsintheyoungeragegroupshadreceivedtheirdiagnosisinashortertimeperiod.7.5% oftherespondentsdidnotindicatetheyearoftheirfirstdiagnosis.

Astatisticallylargerproportionofthefemalerespondentsindicatedhavingauniversityeducationthanmen(59%vs44%,p<0.001),andfewerfemalesreportedhavingasecondleveleducation comparedtomalerespondents(30%vs44%,p<0.001).

Figure4.1: Geographicaldistributionofrespondents

Table4.1: Characteristicsofrespondentsbysex,age,yearswithdiagnosisandeducation

All N1,612

Sex

Female1,367(84.8%)

Male231(14.3%)

Other14(0.9%)

Agegroup

<3580(5.2%)

35-44168(10.9%)

45-54307(19.8%)

55-64478(30.9%)

65-74366(23.7%) >75148(9.6%)

Yearswitharthritis

Lessthan2years167(10.4%)

2-5years345(21.4%)

6-10years319(19.8%)

Over10years655(40.6%)

Notreported126(7.8%)

Education/training

Primaryeducation47(2.9%)

Secondaryeducation480(29.9%)

Universityeducation870(54.2%)

Othereducation207(12.9%)

4.1.2 Arthritisandcomorbidity

Table4.2summarisesrespondents’identificationoftheirarthritisdisease,basedonarangeofdifferenttypesofarthritisdiseases(seeTable3.1).Respondentscouldalsoselectthe"other"optionwith afreetextoptionforadditionaldescriptions.Theseresponseswerereviewedandfrommorethan 150combinationsofdifferentdiseases,theywereorderedandsubsequentlyarrangedasshownin thetable.Thegroupof"other"diagnosescouldnotbeassignedtoanyofthelistedcombinations. 91respondentsdidnotrespondtothissectionofthequestionnaire.

Table4.3summarisesrespondents’additionalhealthconditions(comorbidities),notcategorised asarthritisorrheumaticdiseases.Respondentscouldindicatehavingmultiplehealthconditions. 37.9%ofrespondentsreportedhavingnoothermedicalconditionsotherthanarthritis,23%ofall respondentsreportedhavinghypertension,14%reportedhavingasthma,COPDorsomeotherform oflungdisease,10.7%ofrespondentsindicatedashavingamentalhealthcondition.Afurther24% reportedhavingconditionsotherthanthoseshowninthetable.

Table4.2: Repondents’identificationofdifferenttypesofrheumaticandmusculoskeletaldiseases

All N1,612

Arthtitisdiagnoses

01RheumatoidArthritis(RA)299(18.5%)

02RA&fibromyalgia(fibro)74(4.6%)

03RA&OA64(4.0%)

04RA&JIA25(1.6%)

05RA&PsA18(1.1%)

06RA&Raynaud’s10(0.6%)

07RA&Sjögren’s10(0.6%)

08RA&OA&fibro21(1.3%)

09RA&other92(5.7%)

10Osteoarthritis(OA)378(23.4%)

11OA&fibro26(1.6%)

12OA&Gout20(1.2%)

13OA&PsA18(1.1%)

14OA&polymyalgia12(0.7%)

15OA&Raynaud’s12(0.7%)

16OA&PsA&fibro14(0.9%)

17OA&Other48(3.0%)

18Psoriaticarthritis(PsA)172(10.7%)

19PsA&fibro20(1.2%)

20PsA&AxSpA10(0.6%)

21PsA&other27(1.7%)

22Axialspondyloarthritis58(3.6%)

23Fibromyalgia32(2.0%)

24Juvenileidiopathicarthritis12(0.7%)

25Gout11(0.7%)

98Other38(2.4%)

99None91(5.6%)

Abbreviations:

RA:Rheumatoidarthritis;OA:Osteoarthritis;PsA:Psoriaticarthritis;JIA:Juvenileidiopathicarthritis;Sjögren’s:Sjögren’s syndrome;AxSpa:Axialspondyloarthritis;Fibro:Fibromyalgia;Polymyalgia:Polymyalgiarheumatica;Raynaud’s:Raynaud’s;Lupus:Lupus(SLE)

Table4.3: Repondents’otherhealthconditions

Nootherconditions589(37.9%) Diabetes80(5.2%)

Asthma,COPD,otherlungdisease220(14.2%) Cancer53(3.4%)

Hypertension361(23.2%)

Cardiovascular106(6.8%)

Stroke17(1.1%)

Neurological16(1.0%)

Mentalhealth166(10.7%)

Otherconditions378(24.3%)

4.1.3 Financialsupport

Respondentswereaskediftheyhadreceivedfinancialsupportfortheirhealthcare.Thesequestions wereformulatedwithresponseoptions"Yes"or"No"andonlyrespondentswhoansweredthese questionswereincludedintheanalysis.370of1098respondents(34%)indicatedtheyhadamedicalcard,237outof1155respondents(22%)indicatedthattheyhadaGPcard,and784of1068 respondents(73%)indicatedthattheyareregisteredwiththeDrugsPaymentScheme.Alarger proportionoftheolderrespondentshadaGPormedicalcard,astheseareonlyavailabletopeople agedover70yearsand/orwithannualincomebelowacertainlevel.

4.1.4 Healthinsurance

Respondentswereaskediftheyhadprivatehealthinsurancethatcoverssomeofthecostoftheir healthcare.Ofthe1098respondents,770respondents(70%)indicatedthattheyhadprivatehealth insurance.Themeanpaymentforprivatehealthinsuranceperrespondentwas €2043(SD1328). 60%ofthosewithprivatehealthinsuranceindicatedthattheyhadreceivedreimbursement,witha meanamountreimbursedperrespondentof €976(SD2429).

Agreaterproportionofrespondentsagedover65years,andwithauniversityorothereducationlevel,hadprivatehealthinsurance.Respondentswithosteoarthritisweremorelikelytohave privatehealthinsurancecomparedtorespondentswithothertypesofarthritis.Amongtherespondentswhohadprivatehealthinsurance,noclearpatternoftheamountofreimbursementcouldbe identified.

4.1.5 Lifeinsurance

Respondentswereaskediftheyhadlifeinsurance.Atotalof494of1074respondents(46%)replied tothisquestion.76or7%indicatedthattheyhadnolifeinsurancebecausetheywerenotapproved,

whentheytriedtopurchaseapolicy.111of684respondents(16%)indicatedthattheywereaware thattheirpremiumwasincreasedduetotheirarthritis.Lifeinsurancewasmorecommonfor respondentswhoweremale,youngerandwithauniversityleveleducation.

4.2 Generalhealthandwellbeing

Threeinstrumentswereusedtomeasurerespondents’generalhealthandwellbeing.

TheGeneralHealthquestionisasinglemeasurewithfivecategoriesrangingfrom"poor"health to"excellent"health.Thisquestionisfrequentlyusedinpopulationsurveysandwasincludedinthe Irish2022census.However,thecategoriesusedinthecensusdifferedslightly,(excellenthealthis rewordedasverygood,andpoorhealthisrewordedasverypoor),makingcomparisonspotentially invalid.However,otherdatasourcessuchasthepopulation-levelHealthyIrelandsurveys20212023haveusedthesamecategoriesasinthecostofarthritisquestionnaire.Thisallowedusto comparetheoverallhealthstatusofrespondentsandtocomparetheirhealthstatustothegeneral population’shealthstatus.

Surveyrespondentswerealsoaskedabouttheirsleepqualitywithasinglequestionwithfive categoricalanswers.Respondentscouldindicatewhethertheir"sleepisnotinterrupted"to"unable tosleep".Wehavenoaccesstocomparativedata,andpresenttheseresultsdescriptively.

Finally,respondentswereaskedtodescribetheircurrenthealthstatususingthestandardEQ5Dinstrument.Thisisafrequentlyusedmeasureforhealth-relatedqualityoflifeandisarecommendedmeasurebyHIQAforhealthtechnologyassessmentinIreland.Theinstrumentconsistsof fivedimensions:mobility,self-care,usualactivities,painanddiscomfort,anxietyanddepression. Eachdimensioncanbedescribedinfivelevelsrangingfrom"noproblems"to"extremeproblems/unabletodo".ArecentresearchprogrammeconductedatUniversityofGalwaydevelopeda measurableindex,where1denotes"perfecthealth"and0"death" 1.Anindexbelow0indicates healthstatusworsethandeath.WeanalysedtheEQ-5Ddatafromarthritisrespondentsforeachof thefivedimensionsandassignedanindexscoreusingtheUniversityofGalway’sscoringalgorithm.

4.2.1 Generalhealthstatus

Table4.4reportsontheself-reportedgeneralhealthstatusoftherespondentsacrossdifferentsubgroups.20.4%ofrespondentsreported"poor"healthstatus,while34.4%reported"fair"and32.1% "good"healthstatus.13.2%ofrespondentsreportedtohave"verygood"or"excellent"healthstatus.Thedifferencesingeneralhealthstatuswerestatisticallysignificantbetweenmaleandfemale respondents(p=0.002).Therearealsoindicationsofastrongagegradientsuggestingahigher proportionofolderfemalerespondentsreportedworsehealthstatus(p<0.05)thanoldermalerespondents.

Figure4.2illustratesthevariationinhealthstatusbetweenagegroups.Agreaterproportionof olderrespondentsreportedpoorerhealthstatusthanyoungerrespondents.Thehighestproportion

1Hobbins,A.,Barry,L.,Kelleher,D.etal.UtilityValuesforHealthStatesinIreland:AValueSetfortheEQ-5D-5L. PharmacoEconomics36,1345–1353(2018).https://doi-org.zorac.aub.aau.dk/10.1007/s40273-018-0690-x

ofrespondentsreportingexcellenthealthstatuswerethoseaged45-54years.

Table4.4: Generalhealthasreportedbyparticipants

Generalhealthstatus

PoorFairGoodVerygood/excellentAll

N314(20.4%)530(34.4%)495(32.1%)203(13.2%)1,542(100.0%)

Sex

Female279(88.9%)444(83.8%)421(85.1%)166(81.8%)1,310(85.0%)

Male30(9.6%)84(15.8%)72(14.5%)33(16.3%)219(14.2%)

Other5(2.5%) <5(-) <5(-) <5(-)13(7.5%))

Agegroup

<3522(7.3%)30(5.8%)16(3.4%)7(3.7%)75(5.1%)

35-4442(13.9%)61(11.9%)43(9.1%)15(7.9%)161(10.9%)

45-54100(33.0%)100(19.5%)73(15.4%)24(12.6%)297(20.1%)

55-64104(34.3%)183(35.7%)123(25.9%)50(26.3%)460(31.1%)

65-7428(9.2%)102(19.9%)153(32.3%)68(35.8%)351(23.7%) >757(2.5%)37(7.2%)66(13.9%)26(13.7%)136(9.2%)

Education/training

Primaryeducation <5(-)16(3.0%)14(2.8%)11(5.4%)43(2.8%)

Secondaryeducation89(28.3%)150(28.4%)158(31.9%)59(29.1%)456(29.6%)

Universityeducation178(56.7%)285(54.0%)260(52.5%)115(56.7%)838(54.4%)

Othereducation45(14.3%)77(14.6%)63(12.7%)18(8.9%)203(13.2%)

Diagnosis

RA35(11.1%)105(19.8%)103(20.8%)53(26.1%)296(19.2%)

RA&other56(17.8%)96(18.1%)54(10.9%)14(6.9%)220(14.3%)

OA38(12.1%)99(18.7%)153(30.9%)86(42.4%)376(24.4%)

OA&other28(8.9%)26(4.9%)34(6.9%)13(6.4%)101(6.5%)

PsA35(11.1%)63(11.9%)55(11.1%)18(8.9%)171(11.1%)

Other122(38.9%)141(26.6%)96(19.4%)19(9.4%)378(24.5%)

Figure4.2: Generalhealthstatusbyagegroup

Table4.5comparestheself-reportedgeneralhealthstatusoftherespondentstothegeneralpopulation’shealthstatusfromtheHealthyIrelandsurvey.13.2%oftheserespondentsreportedas having"poor"or"fair"health,comparedto54.8%fortheArthritisIrelandpopulation.Similarly, 97.5%ofrespondentsintheHealthyIrelandsurveyreportedashaving"good","verygood",or "excellent"health,comparedto45.3%oftheArthritisIrelandrespondents.Thesesubstantialdifferenceswerestatisticallysignificant(p<0.001).Therearealsoindicationsofastrongeragegradient fortheArthritisIrelandrespondentssuggestionsofahigherproportionofolderfemalerespondents reportedworsehealthstatus(p<0.05)thanoldermalerespondents.

Table4.5: ComparisonofgeneralhealthstatebetweensurveyparticipantsandHealthyIreland survey

AISurveyn=1542HISurveyn=22,308

4.2.2 Sleepquality

Table4.6showsthesleepqualityofrespondentsacrossdifferentsub-groups.20.5%ofrespondents reportedhaving"serious"sleepdisturbances,39.8%reportedfrequentandnearly39.6%reported raresleepdisturbances,duetotheirarthritis.Thedifferencesinsleepqualitybetweenmalesand femalesandagegroupswerenotstatisticallysignificant.Figure4.3illustratesthevariationin sleepqualitybyagegroups.Respondentsaged45-54yearshadthegreatestproportionreporting "significant"sleepinterruptions.

Figure4.3: Sleepqualitybyagegroup

Table4.6: Sleepqualityasreportedbyrespondents

Sleepproblems

SeriousOftenRareTotal

N316(20.5%)613(39.8%)610(39.6%)1,539(100.0%)

Sex

Female284(89.9%)536(87.4%)487(79.8%)1,307(84.9%)

Male26(8.2%)74(12.1%)119(19.5%)219(14.2%)

Other6(2.5%) <5(-) <5(-)13(7.5%))

Agegroup

<3513(4.3%)23(3.9%)39(6.7%)75(5.1%)

35-4425(8.3%)67(11.4%)69(11.8%)161(10.9%)

45-5483(27.4%)114(19.3%)100(17.1%)297(20.1%)

55-64107(35.3%)202(34.2%)151(25.9%)460(31.1%)

65-7457(18.8%)129(21.9%)162(27.7%)348(23.6%) >7518(5.9%)55(9.3%)63(10.8%)136(9.2%)

Education/training

Primaryeducation11(3.5%)19(3.1%)12(<2.5%%)42(2.7%)

Secondaryeducation103(32.7%)176(28.7%)175(28.7%)454(29.5%)

Universityeducation153(48.6%)332(54.2%)353(58.0%)838(54.5%)

Othereducation48(15.2%)86(14.0%)69(11.3%)203(13.2%)

Diagnosis

RA29(9.2%)101(16.5%)166(27.2%)296(19.2%)

RA&other67(21.2%)90(14.7%)61(10.0%)218(14.2%)

OA61(19.3%)142(23.2%)172(28.2%)375(24.4%)

OA&other29(9.2%)46(7.5%)26(4.3%)101(6.6%)

PsA28(8.9%)67(10.9%)77(12.6%)172(11.2%)

Other102(32.3%)167(27.2%)108(17.7%)377(24.5%)

4.2.3 EQ-5Dhealthstatus

Figure4.4showsthedistributionofEQ-5Dhealthstatusfor1539respondentsacrossthefivedimensionsandlevels.70%ofrespondentsreportedproblemswithmobility,35%haveproblems withself-care,80%haveproblemswithusualactivities.97%ofrespondentsreportedproblems withpainanddiscomfortand65%reportedproblemswithanxietyanddepression.Weidentified statisticallysignificantdifferencesbetweenmaleandfemalesinmobilityandusualactivities(males werelesslikelytoreportproblems).Noclearagegradientwasidentified.

Table4.7showstheEQ-5Dindexscoresand95%confidenceintervalsbydifferentgroups.Males hadasignificantlyhigherscore(0.64)thanfemales(p=0.004).Respondentswithprimary(0.52)and secondary(0.53)leveleducationreportedthelowesthealthscores.Arthritisdiagnosisfor+10years hadthelowestscore(0.55).PoorEQ-5Dscore(0.30)wasassociatedwithpoorgeneralhealth.

Figure4.4: EQ-5Dhealthstatus

Table4.7: EQ-5Dmeanscoreand95%confidenceinterval

nMean(95%CI)

All15110.583(0.567-0.599)

Sex:Female12860.574(0.557-0.592)

Male2130.644(0.606-0.681)

Other120.419(0.154-0.684)

Age: <34740.575(0.489-0.660)

35-441590.608(0.557-0.658)

45-542960.560(0.524-0.597)

55-644550.564(0.535-0.592)

65-743340.643(0.614-0.673)

>751330.546(0.491-0.602)

Primaryeducation410.528(0.445-0.610)

Secondaryeducation4400.532(0.500-0.564)

Universityeducation8300.615(0.595-0.636)

Othereducation1990.574(0.533-0.614)

RA2860.712(0.685-0.739)

RA&other2170.475(0.432-0.519)

OA3670.598(0.567-0.628)

OA&other990.496(0.433-0.559)

PsA1720.677(0.637-0.716)

Other3700.510(0.475-0.546)

Arthritis: <2years1630.628(0.581-0.675)

2-5years3340.607(0.574-0.639)

6-10years3090.599(0.567-0.631)

>10years6420.559(0.533-0.584)

GeneralHealth:Poor3090.304(0.264-0.344)

Fair5150.572(0.549-0.594)

Good4850.695(0.676-0.715)

Verygood1580.753(0.711-0.795)

Excellent430.820(0.756-0.884)

Basedondatafrom1511respondents.

4.3 Healthcareservicesuseandexpenses

Respondentswereaskedtoindicatethenumberofvisitstodifferenthealthcareprovidersrelatedto theirarthritisdiseaseinthelast12months.Respondentsalsoreportedtheaveragedurationofeach visitandthetotalamounttheypaidforeachhealthcareservice.Theseexpensesdonotconsider potentialreimbursementsfromprivatehealthinsurance.

Table4.8: Summaryofdatarelatedtouseofhealthservices

n%AverageperuserSD

usersusersVisitsCost[€]Cost[€]

HealthService

GPservice97187.75.6225605

OutofhoursGPservice15714.22.4106178

HospitalOutpatientapp.57952.33.6283973

HospitalA&Evisit18416.61.8130296

PrivateConsultantapp.59253.52.9490418

SurgeonAppointment23321.02.8373702

BloodTests94285.14.07998

X-ray/MRI65258.92.3191294

PublicHealthNurse887.95.42361

PhysiotherapyServices53548.37.6382590

OccupationalTherapy908.13.03096

SpeechandLanguageTherapy50.55.600

Orthoptist/Prosthetists605.42.2425669

DieticianServices696.22.4181266

OpticianServices58652.91.5266244

DentalServices61755.72.65042,772

ChiropodyServices23020.84.3191244

Psychological/Counselling12911.710.6455545

DayCareCentre80.720.9666952

Rehab/RespiteCare121.12.7126265

Chiropractor413.74.7296243

Alt.therapy/Compl.med.24822.49.9476507

PharmacyConsultation18817.05.7196349

Basedondatafrom1107respondents.

Table4.9: Summaryofdatarelatedtouseofovernighthealthservices

n%AverageperuserSD

usersusersAdmissionsNightsCost[€]Cost[€]

Overnighthealthservice

PlannedInpatientsstay988.91.62.73,1366,299

EmergencyInpatientsstay766.91.51.11,80810,518

Rehab/respitecare211.91.11.39822,165

Basedondatafrom195respondents.

4.3.1 Healthcareservicesuse

Table4.8summarisesrespondents’visitstovarioushealthcareprovidersandTable4.9summarises theuseofvariousovernighthealthservicesinthelast12months.971(88%)ofrespondentshad visitedtheirgeneralpractitioner(GP),withanaverageof5.6visits.Onaverage,theserespondents paid €226fortheirGPvisits.85.1%ofrespondentsunderwentfourbloodtestscosting €79.

Table4.9showsthatduringthelast12months,98(8.9%)ofrespondentswerehospitalisedas plannedinpatients.Theserespondentshadanaverageof1.6admissionsandspentonaverage2.7 daysinhospital.Themeanprivatecostspentbyeachrespondentontheirinpatientstayswas €3136. Fewerrespondentsreportedusingemergencyhospitaladmissionsandadmissionstorehabilitation and/orrespitecare.

Figure4.5showstheaveragenumberofvisitstodifferenttypesofhealthcareservicesforall therespondentswhocompletedthissectionofthequestionnaire.Onaverage,eachrespondenthad visitedahealthcareprovider27timesinthelast12months.Table4.10showsthevariationinthe

Figure4.5: Averageuseofhealthcareservices

numberofvisitsand95%confidenceintervalsbydifferentrespondentsub-groups.Onaverage,femalesreported28visits(95%CI26-29)whilemalesreported22visits(95%CI18-27).Thisdifference wasstatisticallysignificant,withfemalesreportingonaverage7morevisitsthanmales.Respondentswithrheumatoidarthritisandotherconditionshadthehighestnumberofvisits,averaging 35.3.Respondentswitharthritisfor10+yearshadanaverageof27.6visitsinthelast12months. Differencesbyageforothergroupswerenotstatisticallysignificant.

Table4.10: Averagenumberofhealthcareprovidervisits nVisits(95%CI)

All110726.9(25.4-28.4)

Sex:Female93927.7(26.1-29.3)

Male16022.4(17.5-27.3)

Other826.2(13.3-39.2)

Age: <344525.1(20.3-30.0)

35-4411029.2(24.6-33.8)

45-5421928.3(25.1-31.5)

55-6434826.3(23.8-28.7)

65-7424224.9(21.7-28.2)

>7510325.8(21.2-30.3)

Primaryeducation2827.1(19.0-35.2)

Secondaryeducation31226.2(22.7-29.8)

Universityeducation61726.3(24.5-28.1)

Othereducation14930.7(26.7-34.7)

RA20822.5(19.3-25.6)

RA&other14935.3(29.0-41.5)

OA26320.3(18.2-22.4)

OA&other6928.2(23.6-32.8)

PsA13426.7(23.1-30.3)

Other28431.6(28.4-34.8)

Arthritis: <2years12427.5(21.4-33.5)

2-5years23826.6(23.7-29.6)

6-10years23425.8(22.4-29.1)

>10years47427.6(25.4-29.8)

GeneralHealth:Poor22737.4(32.9-41.8)

Fair38627.3(24.9-29.7)

Good35023.8(21.5-26.2)

Verygood10816.9(14.0-19.9)

Excellent3515.7(11.3-20.1)

Basedondatafrom1107respondents.

4.3.2 Healthcareexpenses

Figure4.6: Averageexpensesforhealthcareservices

Figure4.6showstheaveragepersonalcostsspentbyrespondentsfordifferenttypesofhealthcare services.Inthelast12months,eachrespondentspentanaverageof €1980ondifferenthealthcare services.

Table4.11showsthemeancostsbydifferentrespondentsub-groupsand95%confidenceintervals.Onaverage,femalesspent €2000(95%CI1772-2229)andmalesspent €1814(95%CI797-2831). Thisdifferencewasnotstatisticallysignificantlydifferent.Similarly,thevariationofthereported meancostswasnotstatisticallysignificantacrosstheremaininggroups.However,weobservea patternacrosseducationgroups,withrespondentswithaprimaryleveleducationreportedlower privatehealthcareexpensescomparedtorespondentswithauniversityeducation(€1074vs €2220). Weobserveasimilarpatternamongrespondentswhoreportedpoorhealthstatustohavelower privatehealthcareexpensescomparedtorespondentswithexcellenthealthstatus(€2216vs €2878).

Table4.11: Personalexpensesonhealthcare

nMean[€](95%CI)

All11071980(1738-2223)

Sex:Female9392000(1772-2229)

Male1601814(797-2831)

Other82962(-253-6177)

Age: <34451594(1199-1989)

35-441101863(1480-2246)

45-542191773(1447-2099)

55-643481933(1603-2262)

65-742422140(1422-2857)

>751031656(1152-2160)

Primaryeducation281074(703-1445)

Secondaryeducation3121479(1260-1699)

Universityeducation6172220(1865-2576)

Othereducation1492206(1272-3140)

RA2081884(1055-2714)

RA&other1492248(1759-2737)

OA2631724(1358-2090)

OA&other693165(1128-5202)

PsA1341681(1424-1938)

Other2842001(1685-2318)

Arthritis: <2years1241761(1235-2288)

2-5years2381945(1663-2227)

6-10years2342011(1534-2488)

>10years4742109(1632-2586)

GeneralHealth:Poor2272216(1838-2595)

Fair3862252(1735-2769)

Good3501573(1339-1808)

Verygood1081540(1117-1964)

Excellent352878(-927-6683)

Basedondatafrom1107respondents.

4.4 Medicalexpenses

Table4.12summarisesthemedicalexpensesofrespondentsinthelast12months.871(78.7%) respondentsreportedthattheyhavepurchasedprescriptionmedicationandhadspentonaverage €650.25.2%ofrespondentshadspentanaverageof €375onpersonalgrooming.

Figure4.7showsthemeanamountspentonallmedicalandotherproductsforallrespondents. Inthelast12months,eachrespondentspentonaverage €975ondifferentmedicationproducts.

Table4.12: Summaryofuseandpersonalexpensesonmedication

n%AverageSD usersuserscost[€]cost[€]

Products

Prescriptionmedication87178.7650770

Overthecountermedication68161.5172187

Supplements58652.9258295

Othermedication746.7246308

Sexualhealth444.0196201

Personalgrooming27925.2375421

Otherproducts1009.0352452 Basedondatafrom1107respondents.

Figure4.7: Medicalcosts

Table4.13summarisesthemeanpersonalexpensesbydifferentrespondentsub-groups.On average,youngerrespondentshadmoreexpensescomparedtorespondentsaged65andolder (€1226vs €840).ThispatternistobeexpectedduetothelikelyeffectofmedicalandGPcardsamong olderrespondents.Weobservedanassociationofpersonalcostsonmedicationwithrespondent’s generalhealthstatus.Respondentswithpoorhealthstatusspentmoreonmedicationscompared torespondentswithexcellenthealth(€1185vs €612).

Table4.13: Personalexpensesonmedicalproducts

nMean[€](95%CI)

All1107975(918-1031)

Sex:Female939973(918-1028)

Male160964(752-1175)

Other81421(358-2484)

Age: <3445820(627-1013)

35-441101226(1054-1399)

45-542191162(1027-1297)

55-64348958(879-1037)

65-74242840(701-979)

>75103667(535-798)

Primaryeducation28512(338-686)

Secondaryeducation312860(752-969)

Universityeducation6171063(987-1139)

Othereducation149923(784-1062)

RA208958(839-1076)

RA&other1491117(985-1248)

OA263595(498-693)

OA&other69998(770-1226)

PsA1341149(980-1318)

Other2841176(1050-1302)

Arthritis: <2years124833(648-1017)

2-5years238979(888-1070)

6-10years2341063(932-1193)

>10years474987(895-1079)

GeneralHealth:Poor2271185(1058-1312)

Fair3861051(946-1156)

Good350879(784-975)

Verygood108685(566-804)

Excellent35612(452-772)

Basedondatafrom1107respondents.

4.5 Mobilityandassistanceproductsandservices

Table4.14showsrespondents’reportedcostsonmobilityandassistanceproductsandservicesin thelast12months,dividedaspubliclyandprivatelyfunded.Thegreatestproportionofrespondents,24.1%hadprivatelyfundedandspent €330onaverageforbathroomadaptations.10%of respondentsspentanaverageof €3,042onpubliclyfundedkitchenadaptations.Figure4.8shows thatonaverage,respondentsspent €478onmobilityandassistanceproductsandservices.

Table4.14: Summaryofpublicly/personallyfundedmobilityandassistanceproductsandservices

Fundingsource

PubliclyfundedPersonallyfunded n%MeanSDn%MeanSD usersuserscost[€]cost[€]usersuserscost[€]cost[€]

Arthritisrelatedassistance

Bathroomadaptations242.41,7553,41324324.1330259

Kitchenadaptations10110.03,0424,960<5-420

Bedroomadaptations50.56713,46370.75621,004

Appliances414.11,3623,22850.546133

Newclothingoralterations90.94561,650262.6111128

Newfootwearoralterations969.51,2463,120<5-56216

Wheelchairs101.0179735<5-272606

Walkerorrollerframe807.96461,777111.1363616

Wheelchairramp<5-2910813613.51,3312,885

Homeheating/cooling727.1333539<5-1,3755,153

Otherassistance292.9170250383.87281,655

Basedondatafrom1009respondents.

Table4.15summarisesthemeancostsspentonmobilityandassistanceproductsbydifferent sub-groupsofrespondents(€478).Onaverage,femalesspentmorethanmales(€486vs €346). Respondentswithrheumatoidarthritisandotherconditionsspentthemostonmobilityandassistanceproducts,onaverage €715inthelast12months.Respondentswithanarthritisdiagnosisof 10+years(€542),andwithpoorhealth(€655)alsoreportedmorepersonalexpenses.

Figure4.8: Personalexpensesonmobilityandassistanceproductsandservices

Table4.15: Personalexpensesonmobilityandassistanceproductsandservices

nMean[€](95%CI)

All1107478(392-564)

Sex:Female939486(391-580)

Male160346(230-461)

Other82243(-1883-6369)

Age: <3445364(276-452)

35-44110725(221-1229)

45-54219337(285-388)

55-64348470(311-628)

65-74242437(318-556)

>75103722(288-1156)

Primaryeducation28233(181-285)

Secondaryeducation312424(338-510)

Universityeducation617486(362-611)

Othereducation149606(276-937)

RA208318(251-385)

RA&other149715(347-1083)

OA263396(238-554)

OA&other69623(187-1058)

PsA134558(182-934)

Other284474(376-572)

Arthritis: <2years124315(261-370)

2-5years238472(241-703)

6-10years234416(301-531)

>10years474542(393-691)

GeneralHealth:Poor227655(381-929)

Fair386471(352-590)

Good350447(290-603)

Verygood108318(239-397)

Excellent35223(213-233)

Basedondatafrom1107respondents.

4.6 Summaryofexpensesforhealthcare,medication,mobilityassistance, homehelp

Figure4.9showsthemeantotalpersonalexpensesbydifferenttypesofservicesinthelast12 months.Theaverageestimatedpersonalcostwas €3538perrespondent.Table4.16showsthe analysisoftotalprivatecostbydifferentrespondentsub-groups.

Figure4.9: Meanpersonalexpenses

Regressionanalysisofthetotalpersonalexpenditureduetoarthritisdidnotidentifystatisticallysignificantdifferencesbetweenmalesandfemales,althoughonaverage,maleshadspent €680 lessthanfemales(p=0.105).Respondentsagedbetween45and84hadhighercoststhanyounger respondentsandlowercoststhanolderrespondents.Similarly,thecostdifferencesacrossthecost components(healthcare,medicationandmedicalproducts,assistanceandhomehelp)didnotshow anystatisticallysignificantvariation.

Regressionanalysisindicatedastatisticallysignificantdifferenceintotalpersonalexpensesfor respondentswithdifferentcategoriesofgeneralhealth.Thesexandagestandardisedmeancosts withexcellenthealthstatewere €1349(95%CI-423;3212)perrespondent,whiletheaveragecost forrespondentswithfairorpoorhealthstatuswas €3581(95%CI3068;4094)and €4281(95%CI 3598;4965).

Thestandardisedmeanexpensebasedondurationwitharthritisdidnotindicatestatistical differenceandvariedfrom €2687to €3437forrespondentswith2yearsand10+yearswithan arthritisdiagnosis.

Table4.16: Totalpersonalexpenses

nMean[€](95%CI)

All11073539(3260-3817)

Sex:Female9393573(3301-3844)

Male1603177(2130-4224)

Other86752(-749-14252)

Age: <34452823(2274-3371)

35-441103889(3124-4653)

45-542193379(2964-3793)

55-643483454(3059-3849)

65-742423561(2788-4333)

>751033169(2425-3912)

Primaryeducation281863(1452-2274)

Secondaryeducation3122838(2570-3106)

Universityeducation6173893(3484-4302)

Othereducation1493844(2812-4876)

RA2083254(2406-4103)

RA&other1494267(3598-4937)

OA2632788(2369-3207)

OA&other694867(2729-7005)

PsA1343464(2929-3998)

Other2843772(3334-4210)

Arthritis: <2years1242985(2391-3580)

2-5years2383473(3048-3898)

6-10years2343633(3054-4211)

>10years4743746(3227-4266)

GeneralHealth:Poor2274173(3635-4711)

Fair3863896(3340-4452)

Good3502999(2654-3344)

Verygood1082607(2139-3075)

Excellent353757(-71-7586)

Basedondatafrom1107respondents.

4.7 Impactonemployment

Table4.17showstheemploymentstatusofrespondentsbyageinthelast12months.36.9%of respondentsagedunder65yearswereinfulltimeemployment,and21.5%wereinparttimeemployment,ofwhich60%wereinparttimeemploymentduetoarthritis.30.8%ofrespondentsin thisagegroupindicatedthattheyhadretiredorwereunabletowork,with20%ofrespondents indicatingthiswasduetoarthritis.

Theweeklyworkhoursfor427respondentswhowereincurrentemploymentareshownin Table4.18.262(61.5%)wereinfull-timeemployment.Ofthe165(38.7%)inpart-timeemployment, 90(54.5%)indicatedthatthisrelatedtotheirarthritis.Table4.19showsthat295(70.4%)outof419 respondentscurrentlyemployedhadexperiencedalossofincomeduetoarthritisinthelast12 months.Theserespondentshadonaverageanincomelossof €3111.

Table4.20showstheemploymentstatusforrespondentsunder65yearsbyarthritistype(n=632). 66.5%ofrespondentswereactivelyemployed,while33.5%ofrespondentsinthisagegrouphad retiredeitherbychoiceorduetoarthritis.Amongrespondentsinactiveemployment,23.6%had RAand19.3%hasPsA.Respondentswithotherconditionsbesidesarthritisweremorelikelyto haveretiredbeforetheageof65years.

Table4.17: Currentemploymentstatusbyage

Agegroup <65years >65yearsAll

N688(67.9%)325(32.1%)1,013(100.0%)

Currentemploymentstatus

Fulltimeemployment254(36.9%)8(2.5%)262(25.9%)

Parttimeemploymentbychoice59(8.6%)12(3.7%)71(7.0%)

Parttimeemploymentduetoarthritis89(12.9%)<5(-)93(9.2%)

Jobseeking/unemployed/student18(2.6%)5(1.5%)23(2.3%)

Caregiver/volunteer28(4.1%)13(4.0%)41(4.0%)

Retiredbychoice24(3.5%)187(57.5%)211(20.8%)

Retiredearlyduetoarthritis54(7.8%)62(19.1%)116(11.5%)

Unabletoworkduetoarthritis134(19.5%)6(1.8%)140(13.8%)

Other28(4.1%)28(8.6%)56(5.5%)

Table4.18: Weeklyworkhoursforparticipantsincurrentemployment

Weeklyworkhours

<2020-3030-40 >40All N81(19.0%)83(19.4%)196(45.9%)67(15.7%)427(100.0%)

Currentemploymentstatus

Full-time0(0.0%)17(20.5%)178(90.8%)67(100.0%)262(61.4%)

Voluntarilypart-time40(49.4%)27(32.5%)8(4.1%)0(0.0%)75(17.6%)

Notvoluntarilypart-time41(50.6%)39(47.0%)10(5.1%)0(0.0%)90(21.1%)

Table4.19: Incomelossduetoarthritisforthoseactivelyemployed

Agegroup

<65years >65yearsTotal

N398(95.0%)21(5.0%)419(100.0%)

Hasincomelossn(%)281(70.6%)14(66.7%)295(70.4%)

MeanIncomeloss[€]2986(6041)5891(14811)3111(6624)

Note:8participantshavenoindicationofage

Table4.20: Employmentstatusofrespondentsagedlessthan65yearsbytypeofarthritis

Employmentstatus

ActivelyemployedRetiredAll N420(66.5%)212(33.5%)632(100.0%)

Diagnosis

RA99(23.6%)25(11.8%)124(19.6%)

RA&other42(10.0%)45(21.2%)87(13.8%)

OA65(15.5%)34(16.0%)99(15.7%)

OA&other19(4.5%)15(7.1%)34(5.4%)

PsA81(19.3%)20(9.4%)101(16.0%)

Other114(27.1%)73(34.4%)187(29.6%)

4.8 Helpathome

Respondentswereaskediftheyreceivedhelpathomeinthelast12months.116(7.2%)of893 respondentswhorespondedindicatedthattheyhadreceivedhelpathome.12(10%)respondents indicatedthattheyhadreceivedhelpathomefromthestateorlocalauthorityforanaverageof143 hours.

Inaddition,50respondents(43%)indicatedthattheyhadpaidforprivatehelpathomeforan averageof319hours.

Although57(50%)respondentsindicatedthattheyhadreceivedhelpathome,theydidnot specifyifitwasfundedprivatelyorbythestate/localauthority.

116respondentsindicatedthattheyhadreceivedonaverage734hoursofunpaidhelpfromtheir informalcareproviders(spouse/partner,children,relatives,friends/neighbours).

4.9 Timespentonhealthcareandtransport

Table4.21summarisestheaveragetimespentbyrespondentsathealthcareservicevisitsandthe timetravelledtoandfromthesehealthcareservices,inthelast12months.Onaverage,eachrespondentspent105hours(95%CI93-116)travellingtoandfromhealthcareservices.Respondentsaged 55-64spentthemosttimeonhealthcarevisits,totalling107hours,includingtraveltime.Respondentswithpoorhealthspent156hours,comparedtorespondentswithexcellenthealthstatuswho

spent60hoursonhealthcareservicesandtransport.

Table4.21: Combinedtimespentavailingofhealthcareservicesandtravellingtoandfromhealthcareproviders

nmean[h](95%CI)

All1087105(93-117)

Sex:Female926105(94-116)

Male153105(52-157)

Other8162(18-306)

Age: <344580(54-105)

35-44108102(78-125)

45-5421799(80-117)

55-64343107(85-128)

65-7423786(72-101)

>7598105(76-135)

Primaryeducation28105(59-152)

Secondaryeducation30498(69-127)

Universityeducation607105(91-120)

Othereducation147119(93-146)

RA20671(55-86)

RA&other147166(106-225)

OA25379(67-91)

OA&other67110(77-142)

PsA133101(57-145)

Other281123(103-143)

Arthritis: <2years121111(46-176)

2-5years235105(84-125)

6-10years227103(82-124)

>10years468105(89-121)

GeneralHealth:Poor225156(115-197)

Fair380109(90-128)

Good34385(71-99)

Verygood10363(39-87)

Excellent3560(28-91)

Extrapolatedwithdatafrom1087respondents.

Respondentsfrommoreruralareas,Carlow,Clare,Donegal,Kildare,LongfordandLouthspent 30%longeronvisitsandtransportationtohealthcareproviderscomparedtorespondentsfrom Dublin,afterstandardisationforsex,age,education,diagnosisandgeneralhealth.However,there islargevariationinthetimespentamongasmallerproportionofrespondentsfromlesspopulated areas,whichpotentiallyimpactsthestrengthofthesefindings.

5 Discussion

5.1 Summaryofmainfindings

Inthisreportwehaveanalysedthepersonalexpensesthatpeoplelivingwitharthritisbeardueto theirdisease.WeconductedanonlinesurveyamongpeoplefromtheArthritisIrelandnetwork. Morethan1600individualstookpartinthesurveyandpartiallyorfullycompleteddifferentsectionsofthequestionnaire.Havingthismanyresponsesishighlysatisfactory,asitreducesthe likelihoodoftheanalysisbeingskewedbyasmallnumberofselectedrespondents.

TheresultsinthissurveyhavecomefromrespondentsacrossallofIreland.Inadditiontobeing wellrepresentativeofrespondents’sex,agegroup,andawiderangeandcombinationofrheumatic andmusculoskeletaldiseases.Furthermoretheresponsesalsoaccuratelyreflectrespondents’relatedcomorbiditiesandlengthoftimelivingwitharheumaticormusculoskeletaldisease.

Theanalysisfocusedoncapturingrespondents’self-reportedgeneralhealthstatusandsleep patterns.Wecapturedthisinformationusingstandardisedandvalidatedinstruments.Wecaptured health-relatedqualityoflifeusingtheEQ-5DinstrumentandcalculatedascoreusinganIrish developedalgorithm.Thisallowedustocomparetherespondents’surveydatawithdatafrom generalpopulationsurveys.Thishighlightedthatpeoplelivingwitharthritishadmuchpoorer health-relatedqualityoflifecomparedtothegeneralpopulationinIreland.Similarly,wewereable toidentifythatalargerproportionofrespondentslivingwitharthritisdescribedtheirgeneralhealth statusaspoororfair,andfewerrespondentsdescribedtheirgeneralhealthasgoodorexcellent. Thispatternwascloselyrelatedtorespondents’age,wherealargerproportionofolderrespondents describedtheirgeneralhealthstatusaspoorcomparedtoyoungerrespondents.

Intheanalysisofsleeppatterns,wefoundthatalargeproportionofallrespondentsreported havingpoorsleepingpatternsduetotheirarthritis.Similarly,alargeproportionofallrespondents reportedthattheyhaveexperiencedproblemsintermsofmobility,self-care,usualactivities,pain anddiscomfort,andanxietyanddepression.Thisanalysissuggestedthatpoorhealth-relatedqualityoflifewasstronglyrelatedtoage,typeofrheumaticandmusculoskeletaldiseaseandthelength oftimelivingwiththedisease.Italsoappearsthatrespondents’health-relatedqualityoflifewas pooreramongthosewithlesseducation.

Weanalysedrespondents’useofawiderangeofhealthcareandotherservicesinthelast12 monthsandrespondents’associatedpersonalexpenseswhenusingtheseservices.Amongalmost 70%oftherespondentswhofilledoutthissectionofthequestionnaire,eachrespondenthadon average27visitstodifferenthealthcareproviders.Thetotalaverageamountrespondentsspenton

thesehealthcareserviceswas €1980.Inadditiontotheseexpenses,respondentsspentanadditional €976onmedicalproducts, €479onassistanceand €105onhelpathome.Weestimatedthatarthritis imposedameanpersonalexpenseof €3541perrespondent.

Inadditiontothepersonalexpenses,weestimatedthateachrespondentspentasignificant amountoftheirpersonaltimeavailingandtravellingtoandfromhealthcareservices.

Two-thirdsofrespondentswhorespondedtothesurveysectiononemploymentstatuswere undertheageof65years.Over30%oftheserespondentsindicatedthattheyareunabletoworkor haveretiredearlyduetotheirdisease.

Theresultsfromthecostsurveyclearlydemonstratethatrheumaticandmusculoskeletaldiseasesimposeaconsiderablepersonalburdenonindividualslivingwiththesediseases.

5.2 Methodologicalchallenges

Wheninterpretingtheresultsfromthisanalysis,itisimportanttobeawareofthepotentialbiases relatedtotherespondentsandtheirresponses.Asmentioned,respondentswereinvitedthrough thenetworkofArthritisIreland.Theemailmailinglistincludesmorethan13,400addressesand themajorityofrespondents(1456or84%)respondedtotheseemailedinvitations.Theremaining respondentsengagedwiththesurveyfrompostsonsocialmediaplatforms.Theparticipationrate oftheemailinviteeswas11%,whichisrelativelylowbutnotunusual.However,aswehaveno accesstoinformationaboutthepeopleinthenetwork,wecannotmakeanyassessmentofhowwell therespondentsrepresentpeopleinthenetwork.

Itishighlylikelythatthepeoplewhochosetotakepartinthesurveyareaselectgroup.They arelikelytobemoreinterestedandperhapsmoreawareoftheirpersonalexpensesthantheaverage personinthenetwork.Certainly,theseindividualsweresufficientlyinterestedandwillingtospend approximately20minutestocompletetherelativelycomplicatedonlinesurvey.However,forsome, thismayhavebeentoocomplicated,aslessthan70%ofrespondentswhostartedthesurvey,actually completedthefullquestionnaire.

Incontrast,individualswhoweremoreenthusiasticaboutthethemeofthissurvey,havecompleteditmorethanonce.Weidentifiedmultipleresponsesfromthesamepersonbasedoninformationabouttheirsex,age,postcode,andyearofdiagnosis.Fromthisinformationcombined,we wereabletosufficientlyidentifyuniquerespondents.Fromthis,weidentifiedthat90peoplehad completedthequestionnairetwice,and9othershadcompletedthequestionnairemorethantwice. Topreventover-representationoftheserespondents,weonlyincludedtheearliestfullresponse fromtheseindividualsintheoverallanalysis.

Designingacostsurveycanbechallenging,duetomanyothercoststhatcouldpotentially becaptured.Itisimportanttomaintainacomprehensivesurveybyincludingawidevarietyof questions.However,tominimisetheburdenontherespondentsandreducethepossibilityoftoo manyincompleteresponses,itwasnecessarytorestrictthenumberofcostelementstoamore manageablelevel.

Oneparticularaspectrelatedtocostisthereportingperiod.Thepracticehasgreatvariation

andrangesfromrequestingcostdatarelatingtothelastmonth,quarteroryear.Forthissurvey, wechosethelastyearasthetimeframe.Weconsideredthistoberelevantandeasytoanalyse, andtheengagementwithco-designersandpilottesterssuggestedthatafullyearwouldbepossible andthemostappropriatetimeframe.Therelativelylongtimeperspectiveincreasestheriskof recallbias.Somerespondentsmayhaveforgottensomeresourceuseandcouldhavemixedupthe timingofsuchuse.However,thisdidnotseemtobeaparticularproblemamongrespondents.In contrast,itwasclearthatmanyrespondentsreadilyunderstoodthetimeframeandhadnoproblem rememberingtheirvariouspersonalcostsoverthisperiod.

Despiteundergoingco-designingandpilottesting,thequestionnairehadseverallimitations. Thechosencategoriesforeducationlevelwerenotsufficientincapturingthefullrangeofeducationalqualifications.Thisresultedinmanyrespondentsnotbeingabletocorrectlyspecifytheir mostappropriatelevelofeducation,andinstead,beinglimitedtochoosingthe’othereducation’ option.

Anotherchallengewasrelatedtothenon-useofdifferentresources.Initially,wehadconsidered includingadditionaloptionswhererespondentscouldindicateiftheyhadusedaspecificresource ornot,andadditionallycouldindicatethefrequencyanddurationofuse.However,duringthe co-designphase,itwasagreedthatthiswouldfurtheraddtothealreadylongquestionnaire.Alternatively,weconsideredaskingrespondentstoidentifywhethertheyhadusedaresourcezero times.Similarly,thissolutionwouldrequiretherespondentstoactivelyanswermorequestions.In theend,wesimplyaskedrespondentstoreportthenumberofvisitstheyhadmadetoahealthcare provider,iftheyhadmorethanonevisit.Respondentswerealsoaskedtoreporttheiraverage timeandpersonalexpenses,ensuringthattheirresponseswouldmoreaccuratelyreflecttheirperspectives.However,thelimitednumberofresponsestoallofthecostquestionsisachallengein itself.Asindicatedearlierlessthan70%ofthosewhostartedthequestionnaireprovidedcompleted answers.Fortheanalysisitwasimportanttobeclearifsomerespondentshadattemptedtoanswer someofthesequestions,inwhichcaseanon-responsemayberepresentativeofzeroresourceuse ratherthanhavingnoresponseatall.Errorsintheseassumptionsmayhaveseriousimplications fortheestimatesofmeansandconfidenceintervals.

Additionally,theexpensesestimatedpertaintotheday-to-dayhealthcarecostsforindividuals. Thisdiffersfromthemorecommonlycollectedcosts,whicharetypicallyviewedfromthehealthcare system’sperspective.

Someoftheresponseshadtobeexcludedfromthecostanalysisbecauserespondentsprovided variedanswerswhichwereinvalid.Therefore,theestimatedcostsdonotincludesomeinformation thatwasinitiallyprovidedbyrespondents.

5.3 Strengthsandweaknesses

ThisisthefirsttimethepersonalexpensesforindividualslivingwitharthritisinIrelandhave beenreported.Thisinformationwascapturedusingastandardisedandco-designedonlinesurvey, whichmadeiteasyforparticipantstoprovideresponsesonacomputeroramobiledevice.

Thesurveytoolwasdevelopedincollaborationwithpeoplewithpersonalexperienceofarthritis andtheirexpensesrelatedtothedisease.Thisco-designprocessmeantthatweappliedatailor made,comprehensivequestionnairethatincludesmanyfacetsoflivingwiththediseasenotonlyin termsoffinancialexpensesbutalsotheimpactofthearthritisonotheraspectsoflife.Weincluded anextensivepilottestingofthequestionnairewhichhelpedensurethecomprehensivenessand appropriatewordingofthequestionnaire.Thepilotphasealsoaddressedthetechnicalaspects, ensuringrespondentscouldcompletethequestionnaireusingalaptop,tablet,ormobiledevice.

However,sincethesurveywasonlysharedonline,itispossiblethatsomepeoplewhowanted tocompletethesurveywereexcluded.Forexample,peoplewhodonotwishtouseorarenot familiarwithonlineapplicationsmayhavebeenexcludedfromtakingpartinthesurvey.

Inaddition,somepeoplewhostartedthesurveydidnotcompletethefullsurvey.Thismayhave beenduetothesurvey’slength,aswellasrespondents’reluctancetoshareconfidentialinformation abouttheirprivatearthritis-relatedexpenses.

Oneoftheprincipleweaknessesofthissurveyisthatitisunknowntowhatextentthesurvey representsthegeneralpopulationwithrheumaticandmusculoskeletaldiseases.Thisofcourse dependsonhowthesediseasesaredefined.Ithasbeensuggestedthatoneinfourtooneinfive ofthegeneralpopulationhasoneofthesediseases1.Ifthisisthecase,thentherecouldbeupto1 millionpeopleinIrelandlivingwiththeseconditions.However,theHealthyIrelandSurveyincludes asectiononself-reporteddiseases,andthisreportsuggestsaconsiderablylowernumberofpeople withself-reportedarthritis.Itwouldthereforeappearthatitisdifficulttoestablishanaccurate definitionandrepresentationofthepopulationwithrheumaticandmusculoskeletaldiseases.Itis importanttobeawareofthesedifficultieswheninterpretingtheresultsinthisreport.Weaimedto extrapolatepersonalexpensestothenationallevel,butwithoutconsensusonthenumberofpeople withthedisease,suchcalculationswerenotpossible.

5.4 Perspectives

Thecostinformationreportedinthisreporthasmanypossibleuses.Forexample,theresultscan provideareferencepointtounderstandtheprivatecostsassociatedwitharthritis,whichcanbe comparedtotheentireIrishpopulationlivingwitharthritis.

Additionally,theseresultscanbeusedincombinationwithotherdatasources,forexampleIrish survivaldata,fromwhichoutcomessuchaslifetimecosts,lifeexpectancy,andquality-adjustedlife expectancycanbeestimated.

Additionally,theinformationfromthissurveycanbeusedtoinformfutureclinicaltrialsof newtreatmentsforarthritis,aswellasinformthehealthcaresystemandotherstakeholdersofthe financialburdenthatpeoplelivingwitharthritisface.

1VersusArthritis.THESTATEOFMUSCULOSKELETALHEALTH2024.Arthritisandothermusculoskeletalconditionsinnumbers,2024.&ScottishGovernment.TheScottishHealthSurvey2022

A Appendix

A.1 Acknowledgement

Wewishtothankalloftherespondentsforspendingtheirtimeandenergycompletingthelong anddetailedonlinequestionnaire.

A.2 Ethicalapproval

ThestudywasapprovedbytheRCSIResearchEthicsCommittee(REC202304014).

A.3 Funding

ArthritisIrelandprovidedfinancialcontributiontotheRCSISchoolofPopulationHealthtoconduct thisresearch.

A.4 Authors’roleintheproject

JanSorensen,ProfessorofHealthEconomics,RCSISchoolofPopulationHealth.TookpartinnegotiatingthefinancialsupportfromArthritisIreland,theinitialdesignofthestudyandplanningthe datacollectionprocess,co-designofatoolfordatacapture,ongoingmonitoringofdatacollection, datamanagementandanalysis,draftingandeditingofthereport.

GintareValentelyte,PostdoctoralresearcherofHealthEconomics,RCSISchoolofPopulationHealth. Tookpartinplanningthedatacollectionprocess,designofthetoolfordatacapture,ongoingmonitoringofdatacollection,datamanagementandanalysis,draftingandeditingofthereport.

UnaRósaBirgisdóttir,Researchassistant,RCSISchoolofPopulationHealth.Tookpartindata managementandanalysis.

LauraHammond,ResearchOfficer,RCSISchoolofPopulationHealth.Tookpartinplanningthe datacollectionprocess,designofthetoolfordatacapture,ongoingmonitoringofdatacollection, datamanagement.

ClaireKinneavy liveswithrheumatoidarthritisandSjögrenssyndromeandwasinvolvedinthe co-designofthesurvey,providingfeedback,editingandreviewingdraftsofthereport.

TimO’Sullivan isChairmanofArthritisIrelandandliveswithrheumatoidarthritisandpsoriatic arthritis.Timwasinvolvedinco-designingthesurvey.

PeterBoyd liveswithrheumatoidarthritisandosteoarthritis.PeterworksasServicesSupportOfficeratArthritisIrelandandmanagestheorganisation’shelpline.Peterwasinvolvedintheco-design ofthesurvey,providingfeedback,editingandreviewingdraftsofthereport.

TaraRegan isCommunicationsandAdvocacyManageratArthritisIreland.Taraoversawthedesignofthesurvey,coordinateditspromotiontotheArthritisIrelandnetwork,providedfeedback andeditedandrevieweddraftsofthereport.

GráinneO’Leary isChiefExecutiveofArthritisIreland.Gráinnewasinvolvedinco-developingthe survey,providingfeedback,editingandreviewingdraftsofthereport.

A.5 Onlinequestionnaire

6. Help in the home

30. Have you received help at home relating to your arthritis in the last 12 months? (If no, skip to Q35)

34. In the last 12 months, did you receive any paid or unpaid help relating to your arthritis with the following activities?

Getting dressed

Bathing

Eating

Getting in and out of bed

Going to the toilet

Preparing meals

Doing household chores

Gardening

Childminding

7. Ability to Work

35. Please select the status which best defines your current situation with regard to work.

Full time employment

Part time employment by choice

Part time employment due to arthritis

Job seeking

Unemployed

Student

Caregiver within the home

Volunteer

Retired by choice

Retired early due to arthritis

Unable to work due to arthritis

Other (please specify):

36. If in paid employment, how many hours are you scheduled to work per week?

38. If in paid employment, how much did your arthritis affect your productivity while you were working over the last 12 months?

Think about days you were limited in the amount or kind of work you could do, days you accomplished less than you would like, or days you could not do your work as carefully as usual.

Health issue had no effect on my work

Health issue had some effect on my work

Health issue had a significant effect on my work

Health issue completely prevented me from working

39. Over the past 12 months, how much did your arthritis affect your ability to do your regular daily activities, other than work at a job?

By regular activities, we mean the usual activities you do, such as work around the house, shopping, childcare, exercising, studying, etc. Think about times you were limited in the amount or kind of activities you could do and times you accomplished less than you would like.

Health issue had no effect on my regular daily activities

Health issue had some effect on my regular daily activities

Health issue had a significant effect on my regular daily activities

Health issue completely prevented me from my regular daily activities

40. During the past 12 months, have you needed to change jobs due to your arthritis?

Yes

No

Other (please specify):

41. What has been your source of income over the last 12 months?

Employment

Partner's income

Family income

State or local authority grant

State pension

Personal savings

Other (please specify):

42. If you are currently working, what is your annual income?

Less than €25,000

€25,000 to €50,000

€51,000 to €75,000

€76,000 to €100,000

More than €100,000

Prefer not to say

8. Your Transport

43. How are you usually transported to and from the following treatment centres and how long in total does it take? (Minutes)

Outpatient Clinic with Consultant

Other outpatient clinic (E.g. Physio, OT)

GP service

Consultant Appointment

Hospital Admission

Emergency Department

9. Thank you and final comments

Thank you for completing the survey. We greatly appreciate your time and advice.  Click on 'Finish survey' to submit your answers. As this survey is anonymous, once you have submitted your answers, it will not be possible to identify and/or delete them.

If there are other costs related to your arthritis over the last 12 months not yet recorded in the survey, please include these below.

44. If you have any other comments about the survey, please include these here.

A.6 Responsestoopen-endedcostquestion

Question:Ifthereareothercostsrelatedtoyourarthritisoverthelast12monthsnotyetrecordedinthe survey,pleaseincludethesebelow.

• "Mymentalhealthhascompletelysuffered.Iamluckytohavecarersthreetimesperweek,butthey aredoingthebareminimum.IhavelostalldignityandfeelthatsometimesthepainissomuchthatI ambetteroffnothere.Thecurrenttreatmentisworkingbutmeansmonthlyvisitstothehospitaland littleornofollow-upduringtheweek."

• "Tests,MRI,X-rays,scans:Approx €700"

• "Ipay €630ayearinagymthatIonlyusepoolforexercisingandwateraerobicsforseniorsand walkinginthewater.Ithashelpedmesomuch.Priortojoiningthepool,Ispentalotofmoneywith physioasmykneesweregivingup.ThankGodforthepool."

• "Ihavehandcontrolsinmycar,andIhaveaprimarymedicalcert."

• "Hadahipreplacementandalsoastomaoperationinthelastyear.Walkverybadandinpainallthe time."

• "Iamalsolookingaftermy44year-oldsonwhoisawaitinglungtransplant.Heismymainworry."

• "Cane: €40"

• "Daytodaycostsareincreasing."

• "Orthotics: €250"

• "Hireofprivatemobilityscooterwheelchairs."

• "Yes:(1)additionaldentalhygieneappointmentsbecausehandarthritismeansIcan’tproperlybrush myteeth;(2)handandtoenailappointmentsforthesamereason."

• "IneedtomakeanappointmentwithaprivateOTasthereisa2-yearwaitinglist.Thecostisapprox. €250."

• "Buggyforgolf: €30aweek."

• "Ican’taffordcounsellingasonpension.Ineeditasarthritishasmademefearful,isolated,anxious. I’monabiologicanditcancauseillnessasI’mimmunesuppressed.I’maloneandmyback,knees, wrists,neckgetsopainful.IfindtheGP’sshuttlemethroughandI’monGPCardfor6monthsbut withmyhealthinsuranceIatleastgettoseeconsultantsanditpayshalfforX-rays,MRI,Scansetc."

• "Madeadaptationstomyhome14yearsagoandpaidforthemmyself"

• "Payingpeopletodogardenwork,outdoorcleaninganddecoratingwhichIwouldpreviouslyhave donemyself: €600"

• "Reimbursingdriversfordieselandmeals: €300"

• "Privatedentalinsurance: €422.15"

• "Ihavepurchasedvariousknee,backandwristsupports."

• "Fuelforcar."

• "Iwasdiagnosedwithidiopathicpulmonaryfibrosisinthelast12months,whichisRArelatedand whichhasnowbecomeanaddedexpenseforconsultantvisits,extrarelatedtestsetc.whichneedto beclaimedback(50

• "Justthecostofkneesupports,gels,andprescriptionchargesandourprivatehealthinsurancewhich wemayhavetogiveupnextyear."

• "Buyingtakeawayfood,shopboughtcakesandbread."

• "Transport,costofpetrol,parkingetc.Mosthospitalscostafortunetousetheircarparks."

• "Iusemorehomeheatingasthecoldeffectsmyarthritis."

• "HousecleaningandPilates."

• "Ihadtoretireearlywhichmeantlossofincomeandfriendsetc.Workinghelpsyoustaymobile.I’m muchbetternowbutseesomanyspecialists.It’sapainbutI’mmuchbetter."

• "Ihavenowbeentoldlneedtreatmentonmygumswhichwillcost €150forconsultationfee.No appointmentsuntilSeptember2024."

• "IhaveSjögrenssyndromeandamonimmunosuppressants,soIneedtowearfactor50creamevery day.Theapproximateannualcostis €80.Ialsoneedfootcreamsandantisepticbalm(Gehwolcream €15Bepanthen €12)andbandagesforfootpads €12."

• "Carparkingfeesinhospitals."

• "Duetomobilityissuesandinabilitytodrive,transportcostsareenormousespeciallyifpainistoo badtousepublictransportwithseveralchanges,walkingandwaitingtimes.Also,technicaldevices hadtobeadapted,andpriceshavedoubledforspecificitems;heatingandelectricitycostsincreased significantlyduetoextrasupportitems."

• "CostoftaxistoandfromhospitalandGPappointments."

• "Holidays.Ineedtobookplaceswithaccessibility.Costsmore.Concerts.Imustpaytobeseated."

• "Alifterforbowling €26.Handmassagemachine €300."

• "Extraheatingoiltokeepmyhomeheatedisexpensivewiththeincreasedcostofliving.Alsoelectricity isexpensivedespitethegovernmentassistancewhichwasappreciated."

• "IpayacleaningserviceoccasionallyasIcan’tdoallthehouseholdtasksmyself."

• "Onlyhospitalandmedicine."

• "Smallaidstohelpopenjarsandlids."

• "Intolerance/allergiestomedications,includingpenicillinandothers."

• "Chiropodist €500."

• "DuesurgeryonmyfootIwillhavetobuyakneescooter.Toiletsurrounds."

• "MybiggestexpenseandworryisgettingtoBelfasttoseemyorthopaedicsurgeon(Iamonatreatment purchasescheme)andtomyrheumatologyteaminManorhamilton.Andofcoursemyreducedincome havinggivenupworkduetoabadepisodetwoyearsago."

• "IcannotworksoIhavenoincomemyselfandIamcompletelyreliantonmystatepensionandmy husband.Ialwaysworkedmyselfandalwayshadmyownmoney,soIamstruggling. €237forthe statepensionisaninsultandIcan’taffordphysioonthat."

• "FoodandsupplementcostsarehugeformeasIalsohadagastricbypass,sovitaminsandminerals arerequiredandglucosamineforarthritis!AlltheseproductshavebeenrecommendedthatItakefrom mybariatricconsultantandmyrheumatologist."

• "€1200formembershipofaswimmingpoolasregularswimminghelpsmymobilityandrelievesmy pain.Aninterestingcost,whichishardtoquantifyisthecostofticketstoconcertsoreventslike "Bloom"gardenfestival,whereyouplantogoandduetosuddenfatigue(worstpartofarthritis)or maybeunexpectedstrepthroatinfections,youcannotattendtheevent,soyouendupgivingawaythe tickets."

• "Arthritisaffectsmyabilitytoapplyforahigherpaidjob.Silentsufferingofpainandstiffnesscannot haveafinancialcostappliedtoit"

• "Asaresultofincreasedtiredness,Igetthroughmyworkdaybuthavenoenergyleftforhomelifeor housework.IoftenmustnapbeforeIcanhavedinner.IfmyhusbandisgoingoutandIamdueto makedinnerImayordertakeawayifIhavenoenergytocook.Iorderonlineandpayfordeliveries insteadofvisitingstores.Ihaveboughtanautomaticcartohavenogearchangeswhenmyhandshurt fromarthritis.Ibuythingsinlocalshopsinsteadoftravellingtoamajorsupermarketsopayahigher price.OnmortgageprotectioninsuranceIamloadedwithafiftypercentincrease."

• "Kneesupport €60.Regularlychangingpillow €100."

• "Massagegun €40.Heatpads €25."

• "Changedcartoautomatic."

• "Buyingnewclothesduetoweightgainfromlowmobility."

• "Workinghandsplintssupport: €100."

• "IputintheamountthatIpaidforvarioussupportsforjoints.Also,notthisyearbutIpreviously purchasedawalkingstick."

• "Podiatristcosts €40pervisitevery2monthsandisnotavailableonmedicalcard."

• "Expenditureonitemssuchasshoulderheatingpads,footaccessoriesduetosausagetoesbecauseof mycondition,estimatedat €200peryear."

• "Yoursurveydoesn’tconsidermanythingsthatwouldhelpwithourdiseasebutarenotwithinour means.Forexample,anOTrecommendedaparticulartypeofchairbutitisn’tcoveredbythemedical card,andIcannotaffordit.Also,manyofusarewaitingonappointmentsforOTetc."

• "Ten’smachine €60.Supportbandages €120."

• "Mentalhealth.SodownsomedaysbecauseImustworktopaythebillsdespitethepain."

• "Pilatesclasses €150."

• "Ihaveboughtkitchenapplianceswhichspecificallyhelpwithmypooruseofhands.Alsotrynotto buyshoes/trainerswithlacesetc."

• "Onlinecourses."

• "IspendalotofmoneyonlinewhenIseeonlineideas/dietstohelppain.Overtheyear €200."

• "Opportunitycostofnotbeingabletogoforapromotionworthcirca €9kgross."

• "Notfinancialbutemotional,familial,social."

• "Yesdefinitelyothercosts,pluszerohelpfromanybody!"

• "Havingtoputtheheatingonmorethanotherhouseholdsbecausethecoldreallyaffectsme."

• "Otheractivitiesthatwouldhelpmycondition,butnotpossibletotakeuponaccountofcostse.g. Yoga,pilatesorswimming."

• "Kneesupport €14,glovesforhands €30."

• "Petrolfortransporttoappointments,tollbridgecharges,parkingfees."

• "Hadtobuyasmallsecondhandcarasthewalktoandfromthetrainstationistoomuchforme,that was €8,300."

• "€180."

• "Eatingahealthydietisveryimportantbutaswitheverythingelsethecostoffoodhassignificantly increasedrecently."

• "Costofpersonaltimerequiredtorecoverfromactivitiesbothworkandleisure-Ineedtotaketimeto letmybodyrestafterstrenuousorprolongedactivities.Costofmassagestorelievepain €500approx. pa."

• "Voltarol2

• "HavingtouseextraelectricitytodryclothesthatIcan’thangonclothesline.Havingtobuyready meals."

• "Goshthere’ssomuch.EverypennyIhavegoesonlookingaftermyhealthinaroundaboutway. Currentlyputtingloadsofcostsforvisits,bloodtests,procedures,etc.onmycreditcard,whichmeans I’mpaying23

• "Food,changestodietandfreshfruitandvegetablesveryexpensive."

• "IvisitmyfamilyinMayoonceortwiceayear.ImuststayoverinAthloneonboththeoutgoingand returntripasit’stoopainfultocompletethefulljourneyinonetrip.Thiscostsabout €250-€280per visit."

• "Eyedrops,emollients,replacementshoes,drymouthgel/mouthwash,toothpaste.Needsomeoneto cuttoenails!SwimmingasIcan’twalkfar"

• "GoingtoseeGPsandprivateconsultantsisnotcoveredundermyhealthinsurance.Becauseofthe highcostsIamnowattendingCappaghHospitalwhicharewaybetterthananymedicaltreatmentI havereceivedprivately."

• "Householdgadgets,splints,supportsforfeethandsinbed.Compressionsocksandgloves.Lowering cupboards."

• "Thecostthatisunquantifiableisthatofyourlossofself.Withchronicpain,fatigue,poorconcentration andinabilitytodosimpletaskslikekneelingdowntopicksomethinguporgetonthefloor,priceless."

• "BecauseI’minmyearly50’sI’mnotentitledtoacarertohelpmearoundmyhouseandI’mnotable tomanageitalone.Idomybestbutit’saworkfor10minutessitforanhourtypething!"

• "ThreetollsfromwhereIlivetogettohospitalandthreebackhomeagain.Inforinfusioneverysix weeksSofuelcostsarealladdingup."

• "Aidstohelpwithhouseworkapprox. €200."

• "I’vealreadynotedthatIrelocatedtoawarmerhouseinacentrallocationforservices.Thecostof swimming,whichisvitalformymovement,isunaffordableformeatthemoment.Myspousedrives metoallappointmentsthataremorethan30minutesawaywhichis99

• "Approx €100oncompressionsupports."

• "Exercisecoststomaintainhealth.Thatwouldbegymmembershipandpayingforyoga."

• "Requirementforautomaticcar,unabletodrivemanual,anextra5kto10kdependingoncar.Costof gymwithcoachtomaintainmusclestrengthandmobility,yogaandswimming.Allofthesearenot optionalforpleasurebutnecessaryfortryingtomanagemycondition.It’s €2000minperannum."

• "Iteffectsmyhusbandworkinghours.Heloseshoursdrivingmetoappointments.Alsohad3major surgeriesinthelast12months.Hadaspinalfusionrecentlyandhadamajorspinalprocedurethree daysagoinDublin.WeliveinWaterford."

• "Onlineclassesforflexibilitystrength €35permonth."

• "Yes-whileIamafamilycareriteatsintomyhusband’stimewhenIamunwell.Thevalueofmy workwhilenotpaidincursacostinlosthourstomyhusbandandhisjob.Pleasevaluethepurple economy!!"

• "IfeelthatmyanswersareabitskewedasIhavenothadsufficientincomeinthelast12monthsto careformyselfasmuchasIwouldliketo.(e.g.physio,supplements)"

• "Notoverthelast12monthsbutaftermydiagnosisItookaperiodofunpaidleaveandthenayear (unpaid)careerbreakinordertodeterminewhatmedicationwouldworktomanagemysymptoms andwhetherIcouldcontinuetowork.Thathadabigfinancialimpact.OnreturntoworkIneededto purchasenewequipmenttoimprovemyhomeworkstation.Costs €1000."

• "Itravelforwork,anditischallengingintheextremewhencolleaguesexpectItakepublictransport tooverseaslocations,Ineedtogettaxisashavebags/laptopsetc.tocarryandwhilemyfeetare generallyunaffected,Icanbesorefordaysfromcarryinganything!Hands,shoulders,neck,sidesand backareas.Ialsoneedtobookparkingclosetoairportorotherareasatmyowncostasonceagain carrying,pulling,liftingisamajorissuewithdaysofrecoveryafter,whichIcan’thaveasworkmust goon."

• "ForthepasttwoyearsIhavehadfrozenshoulders(bothsides).Havehadadditionalsteroidinjections frommyrheumatologistbutthinknextstepissurgery.Thefrozenshouldersaretriggeringflareupsparticularlyinmyarmswhichcanbecomequiteuseless.Iworkadeskjobandevenwiththislimited useofmyarms,bytheendofaworkingday(evenaniceshort8houroneworkingfromhome)I

wouldhavedifficultyundressing,andwashingmyface,etc.atleastoneortwodaysaweek.Iwork forlawyersandcanregularlyworkupto15-20hoursadaybutamcuttingbackonthatnowasthese longdays,resultinuptoaweekofadditionalpainandweekendsinbed(andIamnotalwayspaid forovertime-grrrrr)."

• "GymsoIcanusethepoolforhydrotherapy.Cost €700peryear."

• "Idon’thavehomehelp,butIneedalotofhelpfrommyhusbandwithallhouseholdjobsasthere aredays,Ijustcan’tdothem.Thathasahugeemotionalcostforus.Parkingcostsathospitalsmake waitinginqueuesatapptsmorestressful.ParkingshouldbefreewithaBlueBadge"

• "Igotapedal-assistbikeinsteadofaregularone.Thiscostapprox. €600."

• "Icannolongerdrivesomustrelyontaxisormyspousetotaketimeoffworktotakemetoappointments.OthercostsincludeGPchargingtorenewdrugprescriptionsasrheumatologywon’tprovide repeatprescriptionsforsomeitems,theypreviouslyprescribed.Overthecountermedicationtorelieve sideeffectsofprescriptiondrugs.Workingtimelosttoschedulingappointments,chasingupresults, sortingoutprescriptions(E.g.renewalofhigh-techdrugprescriptions),constanttripstopharmacy, etc.I’mself-employed!"

• "Ireceivedkneeinjectionswithhyaluronicacid.MyVHIcoveredmostofthecostapartfromtheexcess of €75paidx6visits.Ididn’tseeanoptiontorecordthistypeofinformationinthesurvey."

• "Ifeelmoreshouldbedoneforreducedprescriptioncosts.Otherdiseases,e.g.diabetesreceivefree medication. €80x12monthsisahugecost."

• "Splintsbandagesheatpacks/pads,coldpackssupport,cooling/heatinggelspillows."

• "Ihavetobuycertainsoaps,deodorantandlotionsaswellashavingtopayforsomemedicationas suppliersdon’thavegmsavailablebuthavethemforsale,forexamplefybrogel."

• "Ipay €100amonthforsemipersonaltrainingsessionsandPilatestohelpmyjoints."

• "Costoftravellingtoappointment:KilkennytoStJameshospital."

• "CostofprivatePilates: €1,800"

• "Igotnohelpfromanyoneforanything.Iwork4daysaweekandamasingleparenttryingtosurvive withnohelpfromanyone."

• "Problemssleepingduetopain.Usinghotbathsforpainrelief."

• "Qualityoflifeasenergyusedonworkingandeverydayactivities,cleaningbathingcookingetc."

• "Gloves,socks,Epsomsalts."

• "Helpkeepingmygardenundercontrol."

• "€500ayearformembershiptoahealthclubforaccesstoaheatedpool."

• "Buyingsplintssupportsandsunscreenallyearround."

• "Sometimesmyhusbandmusttaketimeoffworktotakemetoappointmentsresultinginlossof earnings."

• "BecauseI’mimmunosuppressedthere’salsoacostfactorforsunscreenyear-roundof €60.Alsohave topurchasedressingsandsalineforwounds €150."

• "Thelossofmyjobasanursehasbeenahugelossfinancially."

• "Costofbuyingpre-cutvegfruitforconvenience.Deliverycostsforgroceriesetc.whenflaring."

• "Iwasexperiencingalotofcosts.Justrecentlygotamedicalcardwhichishelpingwiththecostsa lot."

• "TaxistofromschoolformykidswhenIcouldn’tdriveapprox. €500.Lossofspouses’earningsdue toneedingtotakeunplanneddaysoffasIwasunabletogetdownthestairslookaftermykidsatall. AlsotakingtimeofftotakemetoappointmentsinDublinCorkincurringsignificanttravelassociated costsontopofconsultantfeesetc.It’sahugefinancialburdenonmyfamily."

• "Splints €40,kneesupports €20,electricblanket €100."

• "IfeelthatIhavespentalotofmoneyonover-the-countermedicationduetothecontinuouscancelling ofmyrheumatologyappointmentsfornoreason.Myappointmentsareusuallyyearlybutappointment dueinSeptember2023wascancelledtwiceandnotscheduledforJune2024.ThisisunacceptableasI cannotlookforadjustmentinmedicationsasGPisreluctantandleavesittorheumatologist."

• "Costtoandfromhospitalanhouraway.Ialsoneedchildcareforthis,andmyhusbandtakestimeoff workforthis.Costoffadditionalheating,tohome,ascoldeffectsarthritis."

• "IncludedpersonaltrainingthatmyconsultantsaidIshoulddotoimprovemymusclesformyfuture."

• "Intangiblecost-Significantimpactonmentalhealthandgeneralwellbeingoverthelast12months duetosevereflareup,resultinginchangestomybiologicinjectionandinabilitytowork(whichin turnaffectspayandstresslevels).Stressisamajortriggerforflareups,assuchitcanbeavicious cycle."

• "Ifyoucan’twalkmuchandthebusdoesn’trunexactlywhereyouneeditto,youmustgetataxi. Youhavetobuygrabber,specialcanandjaropeners,specialthingstohelpyouputonyoursocks, handrails,slipmats,electricblankets,heatpads,icepacks,migraineglasses,pads,eyemasks,special thingstohelpyoutipthekettle,youeatalotmoreconveniencefood,becauseyoucan’tstandlong enoughtocook,youbuyrailsforyourbed,youtry100differenttypesofpillowsandcushions,you buysupplements,CBDoil,thisroot,thatplant,thisbookthatyourthirdcousinrecommended,youpay forextraphysioasyouhaverunoutofyourallowance,youtryacupuncture,acupressure,massage, Reiki,yoga,thishealerandthat,youpayforaprivatescanordoctorappointmenttotryandgetan answer.Anditallcostsmoney."

• "Hadtopayacleanerasphysicallyunabletowashfloorsorreachwithrib/sternumpain."

• "Cleaner!Iwassolimitedattimesintermsofmobility,Igetadeepcleandoneinmyhouseduring keytimeslikeChristmasetc. €500approx.inlastyear."

• "Ipayamonthlyfeeforthegym-thisisreallyimportantasitplayssuchakeyroleinmanagingmy arthritis.Thiscostisjustunder €2Kperannum."

• "Nonappointmentsickcerts €20eachtime, €80totalinthelast12months.Newclothesduetoputting onweightduetoaninabilitytoexercise €500.Notbeingabletousemygymmembershipduetoflare ups €420."

• "Myarthritisiswellcontrolledattheminuteduetomedication.BeforeIwasonthismedicationI wouldhavespentmoreonphysios,GPandoverthecountermedicationetc."

• "TaxiswhenI’mnotabletogetthebusandcan’tdrivesomewherebecausethereisnoparking,andI don’thaveadisabledstickeronmycar.FoodisdeliveredwhenIcan’twalksocan’tcook.Dogwalker whenIcan’twalkmydog."

• "Ivisitedakinesiologist3timeswhichcost €200."

• "Therearesomanyhiddencostssuchasorthotics,vaccinationsrecommendedbyyourrheumatologist, traveltoandfromalltheappointments,parkingathospital,anti-inflammatorygels,over-the-counter painrelief,specificfootwear,etc."

• "BeingabletobetheremoreformysonwhohasADHD,beingabletosupporthimmoreinallways especiallycookingforhimhehastakenthebruntofthat.Also,hisgrantsometimesismostlyspenton taxistotrainstationasI’mnotabletodrivehimwhensotired."

• "Buyingsupportsforankles,wrists.Buyingeyedropsfordryeyes.(Unsurewhichcategorythese shouldfitinto)."

• "Becauseofmycondition-PsoriaticArthritis-Iwasrefusedincomeprotection.Ispoketomyconsultantwhounderstoodmyfrustrationgiventhatmyconditiondoesnotlimitmeinanyway,nordoeshe expectittoshortenmylifespan.Ifoundthistobereallyunfair.Peoplewhohavenoconditions(that theyknowof)canavailofincomeprotectionbutIcannot.MyopinionisthatIaminabetterposition thansomepeoplemyageasIgetbloodstakenregularlyandkeepontopofmyhealthandwellness. Other40-year-oldswithbadhabitsandwhohaven’tbeentoadoctorinyearshaveincomeprotection inplaceandIhavebeenrefused.Seemssounfairtome."

• "IncomeAbilitytopickupcasualworkisgonesincediagnosis.Thiswasabigsupplementtomy income,especiallyduringsummer.Physicalnatureofworkandmedicationsideeffectsmakeitimpossible."

• "Addedheatingcostduetofeelingcoldmore.Supportsforworki.e.chair,keyboardtoalleviatepain etc."

• "WhenIhavehadsurgery,Iusebuseswhichcansometimesamassto €10perdayfordailyactivities."

• "Apartfromlongwaitinglistsforanappointmentwithfacialsurgeon,Iamconcernedthatbythetime Igetonemyissueinmyjawwillbewayworse(notmoneyrelated)butliferelated."

• "Changeofcartoanautomaticduetoissueswhendriving: €26,000"

• "Gymclassessupplementsarebothexpensesrelatedtomydiagnosis. €500peryearforthegym whereIcandolowimpacttraining(Iusedtorunbuthadtogiveitupasdirectedbyconsultant). Supplementsof €40permonth."

• "Adaptiveaidsforwork-ergonomicmouse,officechair."

• "Costsofpurchasingtakeaway/conveniencefoodifunabletocooksomedays,costofdeliveryservice forgroceryshoppingifunabletocarryheavyloadsofshopping,costsofhiringadogwalkerfordays thatpain/fatigueareheightened,costoftaxiserviceifunabletowalkthedistance/standonpublic transport."

• "Ihaveastrictdietandexerciseroutineinordertomaintainmypainlevelsatamanageablelevel.Asa result,Ispendaconsiderableamountextraongroceriesand/orexerciseservices,gearandequipment."

• "€720swimmingpoolmembership."

• "Deliverycosts.Ihavetogetallofmygroceriesdelivered,whichcostsaround €40/month,notincludingthecostofthewastedfoodthatshowsuprottenorotherwiseinediblebecauseIcan’tchooseitin theshopmyself(thishappensveryoften).IalsohavetogetalotmoretakeawaysthanI’dlike,for exampleondayswhenIdon’thavetheenergytopreparefood,whichcangetveryexpensive.Nearly allofmyotherpurchasescomefromonlinewebsitesasIcannotvisitthestoresinperson,meaning Idon’tgetaccesstothereducedpricesforitemsin-storeandalsohavetopayshippinganddelivery costsformostorders.Itcanbeverytimeandenergyconsumingtomanageallofone’spurchases online,shoppingaroundforthelowestpricesandtryingtofindshopsthatofferfreedelivery,whenI couldotherwisejustgotoashopandfindeverythingIneedquickly.It’salsoextremelytimeandenergyconsumingjusttomanageallthedifferentdoctor’sappointments,bloodtests,etc.,whichmeans Ihavelesstimeandenergyforotherthings,likepaidwork.TherehavebeenmanytimeswhenI’ve hadtooptforamoreexpensivepurchasesimplybecauseitismoreconvenientandInolongerhave theabilitytochoosethemorebudget-friendlyoption,despitehavingamuchlowerincomeduetomy inabilitytowork.Also,Ihadtopurchaseanebiketogetaround(approx. €2100)becauseIamno longerabletoreliablyuseastandardbike."

• "Additionalchildcarecostsforemergencysituationse.g.doctorappointments,AEadmissionsetc."

• "Yes,thecostofneedingtohirepeopletodoworksaroundthehouseandgardenthatIusedtobeable toeasilymyself.IwastrainedfromyoungagetodolargerscaleDIYjobs,butnowcannotdothese anymore."

• "Iwasdoingmanualdrivinglessonsbutcouldn’tcontinueduetomyarthritis.Needtostartautomatic lessonsbutasthereissuchademandthepriceshavegonefrom €50to65anhour."

• "NotallmyappointmentsarewiththesamehospitalwhichmeansIhavelongerdrivestoclinicsfor ophthalmiccareandrelyonarelativetobringmeasyoucannotdrivetothose.Thisisahugeburden, andIhavenotyetbeenreferredtomymainclinicforthis.Thisjourneyis100kmeachway."

• "Conveniencepurchasesotherthanusualtosupportarthritis-buyingchoppedvegetables/fruits, readymademeals."

• "Rollatortoassistinwalkingcost €6000."

• "Thereareotherfacilities,hydrotherapypoolandyogaclassesthatIcoulddobuteverythingistoo expensive.Ihavetopayforeverything."

• "Hydrotherapy €40aweekandexerciseclasses €7aweek."

• "HadtopurchaseverylightshoesasItripalot.Difficulttodohouseworkandgardening.Iama widow."

• "ChildmindingtohelpwithkidswhenI’mexhausted."

• "IhavepurchasedakneesupportandWellkneepatcheswhichbothhelp."

• "Ipayforsportsmassagetoloosentightneckmusclesonceamonth."

• "Itwasnecessarytopurchaseanautomaticcarduetodifficultiesinchanginggear.Alsohadtoreplace lawnmowerandothergardenequipmenttolighterbattery-operatedequipment."

• "Igetpainmanagement4timesayearwhichmyhealthinsurancecompanypaysforit(approx.675.00 foreachtreatment)"

• "€10perdaytogototownshopping."

• "Extratankofoilrequiredtokeephomecomfortable: €1150."

• "MostadditionalcostsrelatetopurchasingOTCsupplementsforwellnesspurposes."

• "Ialsosufferfromosteoporosis."

• "Walkingstick €150.Haveplantarfasciitisinmyleftheel.Shoes €160,inserts €400,scan €60thisyear. BetweeneverythingIfindmyselfindebtof €950.Podiatrist €55every6weeks.Ihavebeenseenthree timesfreeofchargebutwillnotseemeforanotherfourmonthssoIwillneedtopayformoreprivate visits.Iam70yearsofage."

• "Changecarforonemoreeasilyaccessible."

• "Dietisexpensivetokeepupeatingproperly."

• "Ihavetouseshoehornandanaidtoputmysockson."

• "Can’tgetpastinterviewstageduetostooping.I’mnowexploringself-employmentoptionsbydesigningajobIcandowithASinasagelocation."

• "Ilostmyjobduetoarthritis."

• "Duetomylong-termType1diabetes,arthritishealthservicesarevery,verypoorforme."

• "Alternativetherapies-naturopath €600,osteopath €600,hypnosis €1000."

• "Lackoftestingonmycondition.Nowrittendiagnosis.Littleornosupport."

• "Paymentintheformofmealsandgiftcertificatestofriendsforhelping.Whichallcostmoney."

• "No,notthatIamawareof."

• "Gym/poolcosts."

• "Exerciseclasses €300."

• "I’mgoingthroughadivorce."

• "Medicalmarijuana."

• "Tryingtogetawaytotheheatduringthewinterifpossible."

• "Notabletomaintainupkeepofarentalproperty.Lossof €2000peryear.Notabletorefereematches anymore.Lossof €2000peryear.Notabletoexercisewellanymore."

• "Costtomentalhealthwithneverhavingenoughmoneywithlargeheatingandelectricbills."

• "Totaloutlayonmedicalcostsfortheyearwasover €7,000.VHIrepaidcirca €2,200sooveralloutlay wasover €4k.Themedicalcardwastakenoffmetwoyearsagoduetomyincomebeingabovethe threshold.DespitemyseverearthritisIamwillingandtryingtoworkyetgetpunishedforworking hardandensuringIhaveagoodjob."

• "Ihaveinvestedinabetterworkstation-ergonomicchair,standingdesk,matetc.Also,I’vebought heatpads,massageequipmentandothergeneralitemstohelpeasemypainandincreasemymobility. Someareusedoftenandothersonlywhenexperiencingextremepainandaflare.I’dsaytheseitems havecostroughly €1kinthelastyear."

• "NotthatIcanthinkof."

• "I’veenteredthemunder’Other’–gymfees €35permonth."

• "Foodwastewhenmyillnesspreventsmefromeatingfoodinthefridge,incalculable.Thecostof gettingtakeawayfoodwhenintoomuchpaintopreparefood,incalculable(min €30perweek).The costofgrocerydeliveryservices,retailershaveminimumspendtoallowfordeliveryandaddaservice chargetotheoverallprice €10perdelivery,twiceperweek.Extrachargetogetassistancespotsfor concertsfromTicketmaster,asGPchargesforletters.Costofmissingticketedeventsthatwerepaid forbutnotattendedduetoarthritisconditions."

A.7 Othercommentsaboutthesurvey

Question:Ifyouhaveanyothercommentsaboutthesurvey,pleaseincludethesebelow.

• "Excellentsurvey.IhaveamedicalcardfromtheEUbecauseIworkedintheUK.Theonlytimeused isformedicine."

• "Wewishwehadamedicalcardasouragesare83and87.Wearemarginallyoverthelimit,buthave constantmedicalproblemsincludingmyhusband,outsideofthissurvey."

• "Itwasinterestingtofillin.MakesmeseethatI’mluckywithmygeneralhealth."

• "Ihavebeenwaiting10yearstoseeaconsultant.Theconsultantsaidthathewasgoingtodiffusemy ankle,butIhaven’theardfromhim.Ialsohavearthritisinmywrist.Ihadtostopridingmymotorbike 6yearsagoonaccountofarthritis.Ididn’thaveenoughpowerinmywristtoaccelerate."

• "IhavehadtogoseveraltimestoGP,hospitalappointment,out-of-hoursGP,hospitalemergency,but asyouaskedfor’arthritis-related’Ididnotincludethem.Thebiggestmonetarycostformehasbeen mywheelchair(stillpayingCUloan),wheelchairramp,anddisabledaidsboughtbeforethelasttwelve months."

• "Itrytomakedo.IcannotgotoseminarswhenrunbyArthritisIreland.Iamnotawareofallservices available"

• "Abookletonentitlementswouldbehelpful.NoteveryoneownsacomputerVisitstodentistsneedto belookedatit’stooexpensiveforpensionersandothers.Ihavenotbeentoadentistinyears."

• "ArthritisIrelandisawonderfulsourceofsupportandhelp.Localmeetingsareverygoodandthe coursestheyofferareexcellent.Moregovernmentfundstosupportthisimportantandvitalservice. Thankyou."

• "PleasecouldIhaveaprintedcopyofthenewsletterandfurtherupdatesdeliveredasIdon’thave internetaccess.Iusedmygrandson’semailjusttocreateanaccount."

• "Likeallsurveys,ithasitsshortcomingsandonafewoccasionsI’veneededtoincludeapprox.figures."

• "Youdidn’tnamePhysicalTherapistspecificallyandIhavefoundthathandsonhelpthemostbeneficial."

• "Ineedtousetaxisatleast3timesperweekasIfindpublictransportmakesthepainfrommyarthritis worse-back,shoulder,hips."

• "Questionsinarthritisrelatedsurveysoftenfocusonthepainaspectoftheillness.Duetoveryeffective biologicandDMARDmedication,mypainiswellcontrolled.However,Ihaveconstantissueswith fatiguewhichcanhaveasignificanteffectonmyday-to-dayenergylevels.Ialsogetregular’flares’of themalaisetypewhichalthoughtheydon’tcausepain,leavemeexhaustedandfeelingfluey.These flarescanbeverydebilitatingandcanmeanhavingtosuspendnormalactivitiessometimesforseveral days."

• "Idoalotofexercisewhichgreatlyhelpsmyosteoarthritisinmyknees.3classesaweekpluswalking. Igotaninjectionintooneknee9monthsagowhichisahugebenefittome."

• "Ineed2newhipsand2newknees,andIhavebeentoldIwillbewaiting9monthstoayeartoseea consultant."

• "Interesting"

• "Ihavetosaythatmycostestimatesareapproximate."

• "At70Ishouldgetmorethan20

• "Itwasfine,didmybesttodothequestions."

• "Theoverallannualcostfiguretomeisshocking,notcalculatedbefore!"

• "It’sablightonthehealthserviceandconsultantsthatyouhavetomakedifferentappointments dependinginwhatareaofyourbodyyouhavearthritis.Ipay €70everythreeweekstoseeaprivate medicalphysicaltherapistwhodealswithmeasawholepersonandworksonwhateverpartofmy bodyisgivingmepainatthattime.Thistherapisthassuggestedexercisesthathavegivenmeawhole newperspectiveonmyarthritis.Ihavecutbackonwalkingwhichexacerbatestheconditioninmy feetandthankstoheradviceInowswim4/5timesaweek.Beingtreatedasawholepersonwiththis conditionhasbeenlifechangingforme.Traditionalmedicineinthiscountryneedsarethinkabout howpatientsaretreated."

• "Myarthritisisverymildatpresent."

• "Ididitratherlateatnightsoittookmelongertodoit!!!!"

• "Hadhipreplacementlastyearduetoarthritis.Muchimprovement."

• "I’minearlystagesofarthritishencewhysomequestionsleftunanswered."

• "Tooboxedandnotenoughchoiceforanswers."

• "Thankyoufordoingthissurvey.BothmyhusbandandIhavesimilarconditions.Ourconsultantis retiringsoon,andwehavebeentransferredtoanotherconsultantwhoischargingalmostdoubleand awhooping €250eachforaninitialconsultation.Thanksagain."

• "Ihavearthritisashasmyhubby.Iamalsoacancerpatient.Lifeishardforus,butwecopeatthe moment."

• "Ifinditveryhard/difficulttogetmorethanoneappointmentayearwithmyconsultantespecially whenthepaingetsworse"

• "Thecostforfacetrhizotomyseemsexorbitant. €2000totheconsultantand €2000tothehospital. Maybethat’swhyprivatehealthinsurancecostsarewhattheyare.Adayprocedureoverinminutes andaproductionlineofpeoplewaitingfortheirturn.Crazy."

• "Verydifficulttobesureoftheamountoftimeoverayear."

• "HavingachronicconditioniscostlyifIcouldn’taffordtopayformembershipofaleisurecentremy qualityoflifewouldsuffersignificantlyaswouldmymobilityespeciallyinthewintermonths."

• "Myosteoarthritishasbeenputdowntowearandtearandlargelyignored.Iwouldlovesomeoneto touchbasewithandkeepmeinaloopwhenaflareuphappens.Iwouldlikeadviceonhowtohelp myself,howbesttoslowdeteriorationandnothavetoliveonmedication.Tipstokeepmobileand tipsondietetc."

• "It’sverydifficulttofindwhattreatmentsarethebestforyou.Iwastoldtenyearsagotoreplaceboth kneesandmyhip.Istillhavemykneesandhips.Icanwalkanddrivewellenough.Icanswim.I cannotnotrun.Myqualityoflifeisbetterinthelastfewmonths.Ihadstemcelltherapy.It’sworking."

• "Last12months,myhealthhasbeenrathergood."

• "Justwaitingonkneereplacement.Mymobilityisbadwithchronicpainsometimes.Ihopetoseea surgeoninJune.IhadX-raysandhaveseverearthritis.Kneedeformedgoinginwards"

• "Iamnotentitledtoastatepensionorfuelandelectricityallowancedespitebeingonasmallteacher’s disabilitypension.IhadtoretireveryearlyfromworkandfeelthatIhavespentabigportionofmy incomehistoricallyonmyarthritisandadaptingmyhouseandbuyinggadgets,shoesorthoticsand medicationsetc.ThesurveyonlyaskswhatIspentonhouseadaptationsetc.overthepast12months. IfeelIcannotaffordtogototheatresormusicaleventsandspecialholidays.Ifeelextremelyluckyand gratefultohavequalifiedforamedicalcardandambeingwelllookedafterinthepublichealthsystem. Thespiralingcostofelectricity,fuelandcommoditiesisveryworryingwithmyhealthconditionandI amworriedaboutmyfutureasIage."

• "Ihaveneverbeenseeninthepublicsectorformycondition,otherthanmyGPforpainreliefwhen I’mreallybad."

• "HopefullysomedayarthritiswillberecognisedwithLTIcardcomingfromthissurvey."

• "I’vehadtoretireearlyfromtheworkforceduetomyarthritis.IexistonaWidowspension.Idonot qualifyforHouseholdBenefitextrapaymentsasIamnotyet66."

• "Manypeoplewitharthritisarenotdiagnosed.Weareindenialforages.ItwaswhenIwasonday3 ofcovid.Stillviral.Isaidtomyhusband,“I’mfeelingmuchbetter.Justlikeonanautoimmuneday”. Inormallynevercomplain.ButIwasabletofeelitthatday.I’mrecovering.ButthisisexactlyhowI feelonanarthritislowday."

• "GratefulforstateDPSschemecappingcostsat €80asusinghightechdrugswhichareveryexpensive. Iwouldnototherwisebeabletoaffordthem."

• "Itisimportanttodoasurveylikethistoenableresearch."

• "Thissurveyisprobablynotforme,butIdohavearthritisinmyhandsandmyback.Iamreasonably fit,walkalot(two/threehourwalksatweekend).Mymainissueiswithmyhands.Ihavehadto giveupsewingandanyfineworkwithmyhandsbuthavetakenupUkuleleasIcanmanageto playthisinstrument(notverywell)butit’sfun.(andgoodformymentalhealth).Medicationwise, Ioccasionallytakesomeibuprofenforpaininmyhands.MydoctordidoffermeDifenebutItryto avoiditunlessabsolutelynecessary."

• "Hadarthritisforalongtime,doesn’thelpgettingcancerinthemiddleofit."

• "Ipersonallywouldliketobeabletoaffordtreatmentssuchasmassage,hydrotherapytreatments, alternativetreatmentstoaugmenthealthierhabitstoimprovemydailyqualityoflifebutthesearenot availableandareexpensive.TabletsandmedicinesplayabigpartinRheumatoidtreatmentbutitis beingabletoaccessothertreatmentsandamenitiesthatpreventfurtherdamage."

• "Depressedduetoisolationbecauseofillness."

• "Thankyouforyourgreatwork."

• "Addself-employment."

• "Weneverreceivedanyfinancialhelpadaptingourhousetomakelifealittleeasier."

• "AsIamnotdiagnosedwitharthritis,Icouldnotcompletealargeportionoftheform.Ihavehowever paininmywristsandfingerslockinmyrighthandinpasttwomonths.Havebeenattending6week exerciseprogrammerecently."

• "Whatisnotfactoredhereinsurveyiswhatisnotdone,thebareminimumisallthatisdonebecause Icannotdoalotofchoresmyself-thisisdepressingasyousitinthemeleeofuntidiness-apersonal assistantiswhatisneeded-myfamilyandfriendshaveenoughgoingonintheirownlivestobe helpingmeallthetime.Asforpersonalgrooming-youtouchedonthisbutIcannotaffordtospend moneyhere!Ican’tcutmytoenailsbutcan’taffordachiropodist-Igetmaybephysiotherapysessions onhealthservice,butIreallyneeddryneedlingdonebutthatis €80.IalsohavefibromyalgiaandI treatedmyselftosomemassagetherapyformybirthdaybutIcan’taffordthisinongoingtimeit’stoo expensive"

• "Surveywasprettygood,coveredmostareas.Iwouldlikeaquestionabouttheeffectof"fatigue"alone ondailylifeandthecostimplicationse.g.notbeingabletotraveltoweddingsatshortnotice,having tocancelhairandnailappointmentsasaresult,whichmeansyoupayhalfthecostasitiscancelled within24hoursofappointmentdate!!Ofcourse,thenyoudon’tweartheoutfitorshoesyoubought fortheevent!It’shardtoplan!MysociallifehasdefinitelybeenaffectedhugelybymyRA.Iused tosinginachoir.Singingislikealightswitch,itforcesyoutofocusonthemusicandthewords,to forgetyourselfandyourworries.Mostchoirsholdpracticefrom8pmonwards,toolateformewith myfatigue.IwouldloveCorus.i.e.tofacilitateachoirforpeoplewitharthritisinthemorningor afternoon,viazoom,anonlinechoir.Itwouldbefabulous."

• "Nocommentbutretiredfromaphysicaljobmyjointsconstantpain."

• "Surveywasanopportunitytothinkabouteffect,impactandcostimplicationsofarthritisinourlives andalsohowtogoaboutmanagingourcondition.Thankyou."

• "GPandhospitalsdon’tcareorfollowupandwaited18monthsforphysioappointment."

• "Iamfindingworkdifficultatpresentandfindingitdifficulttogetinformationonentitlementswhen Ihavetofinish."

• "OnlineservicesfromArthritisIrelandhavebeenextremelyhelpful"

• "MyrheumatologistrecommendedthatIgettheshinglesvaccinebecauseofmycondition.Thisledto the €465approximateconsultationwiththepharmacistwhoadministeredthetwoshots."

• "Iamattheearlystages."

• "Thisisverydetailedsurveyandaprewarningtohaveitemstohandlikereceiptsfrompharmacy/ annualmedicallistetc.wouldhavebeenuseful."

• "Myhands,kneesandshoulderscausemepain.I’mworkinginanofficeandmanagethere,buttrying todomanualworkathomeisverydifficult.IdowhatIcanandgerveryfrustratedwithwhatIcan’t getdone.Idonotwanttogoonmedicationifatallpossible."

• "I’msureI’veforgottensomething!Newlydiagnosed."

• "Thestruggletolivedaytodaybutnothavesupportisoverwhelmingsometimes."

• "Noproblem,Ididn’trealisethattherewashelpavailable.TryingtodoasmuchasIcantostayas mobileaspossible??"

• "Ioftendropandbreakitemsduetopoorcoordinationandweaknessinmyhands.Thiscostsmealso. Ihadtopurchaseanautomaticcarduetothepaininmyleftfoot.IstruggletoaffordthecarwhichI reallyneed."

• "Inthelast4yearsIhavebeenluckyinthatIwasgrantedamedicalcard.Thishasbeenahugehelp withthecostofmytreatmentforR.A.BeforethisIworkedfulltime,anditcostme €150permonth. SometimesIskippedmyhightechinjectionasIcouldnotaffordtopayforit."

• "Ihaveaninfusionevery6weeksbutdonotknowthecostofsameasitisfullycoveredbymyprivate healthinsurance."

• "Thepensiondoesnotcovermyprescriptionwiththecostofelectricity,foodetc."

• "AsIhavetwochronicmedicalconditionsitisdifficulttodifferentiatebetweensomeoftheimpacts andcosts,andtoascribesameexclusivelytoarthritis.Itisalsodifficulttodifferentiatebetweenwork myspousedoesaroundthehousebecauseIamunabletodoit,andwhathewoulddoanywayaspart ofasharedresponsibility."

• "IalsoavailedoftwoBeactivewithArthritiscoursesrunbyArthritisIrelandoverthepastyear.These are‘free’toattendbutImadeadonationtoArthritisIrelandtohelpcovercosts."

• "Sometests/examsrequestedbymyconsultanthavenotbeencoveredundermyhealthinsurance."

• "Iamstillwaitingonapublicappointmenttoseetheorthopaedicconsultantfornearly18monthsand thehaematologistforcloseto2years."

• "I’veneverconsideredtheeconomiccostofcondition-thankyouforbringingittomind.Myconcern withhavingfibromyalgiaisthelackofdoctor’sknowledgeandsupport,alongwiththesuggestion thatthisisamisdiagnosisofamenopausalimpactonmybody."

• "Ihadtogoprivateasthewaitinglistsweresolongandmyhandsandfeetwereswollen.Myprivate healthinsurancepackageranoutasIdevelopedthisjustafterrenewingandhavebeenoutofpocket forthelastfewmonthsandwillbetillSeptember-somethingneedstobedonetosupportwhenoutof workandthestatuarysickpayisadisgrace!"

• "Ihavehadverylittlehelpfrommydoctors.Itrytomanagemyconditionmyself."

• "Mypainhasruinedmyabilitytobefinanciallyindependent.Thisbringshugestressandworryfor thefuture."

• "ThiscostisokbecauseIworkbutwithretirementcoming,Iwillhavetoreducecosts,thisisaworry astheconditionisslowlygettingworse,thiswasagoodyearcost-wise.Inthepastthesecosthave beenmultiplesofit."

• "Mentalcostofnotbeingabletoliveyourlifebecauseyouarewaitingfordoctors’appointments..."

• "ThiswasveryusefulandIhopethesurveyfindingswillgoalongwaytohighlightingtheneedforall peoplewitharthritistobeawardedthedignityofhavingamedicalcardwithouthavingtocomplete anexhaustingprocess."

• "VerydifficulttoisolatethePsAfromotherissues.Foranumberofyears,IsuspectedthatIhadPsA attendedpriortoscopewhichconfirmedit.ConsultantindicatedtomehethoughtIwaslying.Iam autisticfindithardtodealwithmedicalprofessionals.Alsoinmycase,Iamnowhavingtogojob sharingasateacherduetothemultipleconditionsIhave.Thiswillcostme €12knetayear!"

• "Phoneconsultations/dopeopleagreeordisagree?Howoftendoyougettoseeyourconsultant. Canyoucontactanyoneatthehospital/clinicbyphonewheninaflareorneedingadviceorearlier appointment?"

• "GettingacorrectdiagnosisishellaseverytimeIgotoahospitalappointment,Iamtoldsomething elseistheproblem!!Nohelpwithpainorhowtomanageexercise."

• "I’munabletoletmyconditionpreventmefromgoingtoworkduethemoney!Therefore,Iuse painkillerswhenpossible!"

• "HowdoIfindoutwhatIcangetfromthestatetoassistme."

• "ToldtogoandpaymyselfforprivatephysiotherapistaswaitinglistwithHSEforoutpatientappointmentiscurrently2to3yearswaitinglist."

• "Theimportanceofmovementandexercises.PromotetheonlineHSEyoga/Pilatesandtheonline ArthritisIrelandprogrammes.Thishashelpedmegreatly.Bestofluckwiththesurvey."

• "In2018afterakneearthroscopytotrimatornmeniscusinmyleftkneemyconsultantsaidhewas surprisedtoseesomucharthritisinsomeonesoyoung.MymasseusesaysIhavearthritisinboth knees."

• "Ireallythinkthatstickingto12monthsthroughoutdoesn’tgiveaclearpictureofwhattherealcost istopeople.Itmostdefinitelyisn’tsocutanddried.Therearemorevariablestocosts.Justbecause somethingdidn’thappeninthelast12monthsdoesn’tmeanyouarenotpayingforitnow.Ihopeyou understand."

• "IhaveallbutgivenuplookingforhelpfromaGP."

• "IthinkthissurveyisafantasticideaassomanypeopleinIrelandhavearthritiswhichisadisability butlikemyselfarenotregisteredasdisabled."

• "AnonmeanstestedmedicalcardorGPshouldbeconsidered.Thelong-termchronicdiseaselist needstobeupdatedtoincludearthritis/inflammatoryconditionsthatarelifealteringconditions.In Irelandthewaitinglistsforpublicconsultantsismuchtoolong,thereforeprivatehealthinsuranceis essentialbutnoteveryonecanaffordthepremiuminordertogetpromptmedicalcare."

• "Asabove."

• "Iamself-employedandoftenhaveto‘pushthrough’pain,fatigueflaresasifI’mnotworkingI’m notearning,andpracticallyallofmyhealthcareisself-funded.Thecostofmyhealthcareaffectsmy abilitytodothingslikegoonholidaysortaketimeoffasthecostsareprohibitive.Idon’tknowhow I’dmanageifIwereunabletowork.Thefinancialburdenoftencontributestostresswhichthenhas adetrimentalknock-oneffect.Thatbeingsaid,I’mluckytohaveanexcellentteamaroundme,GP, consultants,painmanagementetc."

• "WhenIrelocatedtonewareanoGP’sweretakingnewpatients.Iwaswithoutonefor3monthsbefore findingaprivateonlyGP.MypartnerearnsagoodbutmoderateincomebutmeansIdon’tqualify formedicalcardandduetomyownbackhistoryIdon’tqualifyforanybenefit.Sowhileit’sgreat andwehaveagreatmarriageIamnowdependentontheirsalary.Lastyearwassoexpensive.Health insuranceissoimportant,butwedon’ttravelabroad,noholidaysunlessafewdayshereandthere withdaytrips.Littleeatingoutetc.theaboveareimpactedbymyhealthbutreally,weareseriously financiallypinnedtothecollarbylackofanysupport.Thelackofawarenessfromhealthprofessionals onthehugevarietyofsymptomsremyelopathyisstaggeringandverydifficulttodealwith.Theinjury

tomyspinalcordmeansthesymptomsoverlaphugelywithMSforexample,trigeminalneuralgia, mobility,allodynia,neuropathicpain,spasticity,painfulnumbnessinthebody,fatigue,balanceissues onandonyetnoawarenessorsupportformyelopathy.Itwasagreatsurvey.HopeitInformspolicy."

• "IfIwasphysicallyabletoworkfulltimeIwould,howeveritisnotpossibleasIneedtoensurerest timeisfactoredintomydailyschedule.Formefatigueisthemostdebilitatingpartofmydiagnosis, thepainIcanmanage,butwouldrathernottohavetolivewithpaindailydespitemyRAbeingin clinicalremission.Thanksfortakingthetimetounderstandtheconsequencesandfinancialcostsof livingwitharthritis."

• "FatiguewitharthritisisaffectinghowmuchexerciseIdo.It’sfrustratingifyouhavebeenusedto doingmore.Also,fatigueaffectsmyeating.Ialsospendmoreonvitamins/supplementsandfoodto helparthritis."

• "Pleaseadvocateforfreemedicine.Ihavenodisposableincome,everythinggoestowardmedicines, physio,consultants,doctors.Wedonotgetfreeanythingtosupportus.Itismeanstestedandifjust abovethethresholdallcostshavetobecovered.Forsomethatleavesnothingandnegativelyimpacts standardofliving,lessincomeforgoodqualitynutritionalfood,heating,houseadaptation,etc.Please makeitarecognisedconditiontoqualifyforassistance.Thankyouforalltheworkyoudo."

• "Thiseffectseverything."

• "IwouldloveifIcouldaccessonlinephysicalhealthworkoutsforstrengthandflexibility.Ideallylive formotivation.AgroupwouldbeagreatwaytohelpmemanagemyarthritisasIfindexerciseso importantbutwhenitflaresit’sacatch22tryingtogettheenergy,overcomepainanddiscomfort,and getmoving.Buttheresultsareundeniable.Idosignupeverynowandagain...butmystiffnessmeans it’shardtokeepupwiththepace!"

• "Thereisneveranyreferencetomyprimarydiagnosiswhichispalindromicrheumatism."

• "Iwasdiagnosedbyaprivateconsultantandonwaitinglistforpubliccare.Duringthefirstyearof diagnosisIhadthousandsinmedicalcostsforGPandconsultantvisits,bloodtests,x-rays,MRIetc. Twoyearslatergotintopublicclinicsocostsmajorlyreduced.Also,myhealthinsurancechangedas myhusbandchangedjobsandhisnewcompanycoveredbetterpremium.So,mycostsoverlast12 monthsarenotcomparabletomycostsintheprevious2years."

• "ThemaincommentIneedtomakeisthatdisabilitybadgesfordriversareforthosewhohave’walking’issuesonly.Ifeelthatthisisveryun-inclusiveformanywhohaveequalmobilityissuescarrying, pulling,liftingandthesepeoplearenottakenintoconsiderationinanyway.Igetupsetthatthere areadequateemptydisabilityspacesinmostshoppingcentres,airports,hotelsandotherestablishmentsthathavetobeignoredwhilestrugglingfromspacesfarawaytoreachrequireddestination. Bluebadgesneedtobecomemoreinclusiveorperhapsanalternativecolourtoindicateotherequally disablingmobilityissuesforpeoplewhoaretryingtocontinuetowork,careandliveasnormallyas possibledaily.Thankyouforforwardingthissurveyandtheverybestwisheswiththeresultsand outcomes."

• "IwishIcouldworklesshoursandrestmorebutIhavebills."

• "I’mnotsurehowmuchIpayforhealthinsurance-workcontributessomeandnotsurehowmuchI gotback(websitedown),sorryIcouldn’tanswerbutIget €25backoneachGPvisit(whichis €65)/ €70backoneveryconsultantvisit(whichis €170).Ialsogottheshinglesvaccinein2023(Ihavehad shinglestwicesince2020)whichcostanadditional €600fortheprescriptionplusGPfeestoadminister. MylastMRIwasin2023(forfrozenshoulders)andIthinkwasfullypaidforbymyinsurance."

• "Priorto16monthsago-Iwasn’tabletoworkfor6yearsduetomyfibromyalgiaandinabilityto walkandstressaggravatingmycondition.Ittookthatlongbreakforsomereliefformybodyandpain continuesbutnottothesameextentasInowworkpart-timebecauseofmyfibromyalgia."

• "DuetoarthritisIhadtotalkneereplacement6weeksago.ThereisvirtuallynosupportthatIcanfind inrelationtomyrecovery.Thesurgerywasdoneprivatelyasitwouldhavetakentoolongpublicly. Thisisanextremelydifficultsurgerytorecoverfrom.Eventhepossibilityofdisabledparkingona temporarybasisisaminefield.Lifewitharthritisisverydifficult."

• "Surveyhaspromptedmetokeepbetterrecordsofcosts.Ireceivenostatecontribution/payment despitebeingonrolloverIllnessBenefitforthepastfewyearswithnoactualpaymentandbeingtold Idon’tqualifyforanyotherillnessrelatedpaymentaseithermyillnessesdon’tqualify,orbecause myhusbandearnsmorethanminimumwage.Ouroutgoingssuchasfamilylivingexpensesand substantiallyincreasedmortgagepaymentsaren’tconsideredagainstqualifyingforillnesssupport payments.Veryfrustrating.Ioftenputoffmedicalappointmentsbasedonhighcost."

• "AvailabilityofonstreetparkingbeinglostduetoActivetravelplansacrossthewholeofDublin impedesmyindependencefreedom.ArthritisIrelandshouldlookatthecostspsychologicalproblems causedbyhavingaccesstoareasblocked."

• "Mybigcostsarethehairdressers(onceaweek)asIcannotwashanddrymyhairmyself,andthen alsothephysioclassestohelpmestaymobile.Myprescriptionisalsoexpensiveasnotallitemsare coveredinthemonthlypayment.Iwouldreallyliketoworklesshours,butitisnotpossiblewithmy financialresponsibilitiesandthentheadditionalcostsoftheconditionsaddtothis.Thissurveydid notcoverfatigue.Thisispossiblymybiggestlimitationandthesymptomthatmostaffectsmyquality oflife.ItalsodrivescostsindirectlyasIenduppayingforthingsIcouldotherwisedomyself."

• "ThebiosimilarmedicationIamcurrentlyonisbrilliant.Ihavehadnoflare-upsinmorethanayear andamfitandwell.Thepreviousoneworkedwellbutthedeliverysystem(pen)leftsignificant bruising.Ispoketoaconsultant,andtheyswitchedmymedsandit’sworkinggreat."

• "AsarthritisisalongtermillnessI/weshouldhaveorbeentitledtoalongtermillnesscard."

• "Diagnosishashadhugeimpactontrajectoryofmycareerearningpotential.Iworkatalevelwell belowmyqualificationsexperienceearnamuchlowersalaryrateduetoillness.Wasunableto workatallfor2-3years.Haveneverbeenaskedbyanydoctorabouttheimpactofmyillnessonmy livelihood!(Ortobehonest,theimpactonanyotheraspectofmyday-to-daylife)."

• "IwasaluckyhighearneruntilIbecameunabletoworkabout7yrsago.Despitebeingluckyand havingcentralisedcompanyincomeprotection(Icouldnevergetasanindividual),thesystemwouldn’t actuallyletmeenterthetrueamountofmyyearlylossinearnings."

• "Iwouldalwayshavepraisedtheservicereceivedinxuntilcovid.TosayIhavebeensodisappointed withtheirlackofcareisanunderstatementandfromspeakingtoothersIknowI’mnotaloneinthat opinion.Haven’tseenaconsultantin4years.Mylastappointmentwas2yearsago.Consultant coveringwaslateinanddidn’tcomeintome.Lefttheappointmentcryingandinpainandbasically feelingitwasallinmyhead.Alotoftimewilljustgetonwithpainetc.asnopointcontactingservice. Havebeenputonnewmedicationbutnofollowup.HadtogotoGPwhosaidreallyxshouldbe dealingwithme."

• "IamonabiologicaldrugforRheumatoidArthritisforthepast12years-Iwillbetakingthisor anotherfortherestofmylife-havingtopay €80(was €125)permonthontheDPSissounfair-it’s alifelongconditionandthereshouldbeanentitlementtofreemedicationforthistypeofillness!To dateIhavepaidapprox. €17,000forthismedication-it’snotright!"

• "Mylifechangedcompletelywithrheumatoidarthritis,Ibecamedependentonothershelp."

• "IrelyheavilyonmysisterandmyfriendwithoutthemIprobablywouldhavediedlongago."

• "Thereiszerohelpandsupportforpeoplelikemestruggling.It’sjustextremelyhardtolivewiththe cost-of-livingcrisis.Weneedtobesupportedbetter."

• "EverytimeIgointotheofficestandingonpublictransportfor40/50minswheretherearenoseats available,whichaggravatesmyarthritisinmyknees.Idonotwearamobilitybadgeasthereisno point."

• "IamacutelyawarehowluckyIamtohaveanextremelysupportivepartner,childrenandemployer. Myemploymentincomehasnotbeenaffected,todate,bymyillness,whichmeansIcanaffordprivate healthinsurance,andcertainoutpatientservices(e.g.physiotherapy).Physiotherapyisessentialfor mymedicalcondition,andifIdidnothavethefinancialmeanstoavailofprivatephysiotherapyand wasreliantsolelyonthepublichealthsystem,Idon’tbelieveIwouldreceivethenecessaryservicesto enablemetoliveanindependent,abledlife."

• "No."

• "ItusaverydifficultconditiontolivewithastotheoutsideworldIlookfineandsothereisalackof understandingofthechallenges.Ifindthisespeciallyfromemployer."

• "Itisveryrestrictiveanddoesalteryourmentalhealthespeciallyofsomeoneonlyintheir40s."

• "Iusedtoworkinfestivals,andevents,andmusicconcerts/gigs-thepandemicstoppedthatindustry forawhile,andthenIhadtofindanotherjobduetomyhippain-yourquestionrelatestothelast12 monthsanditwasslightlylonger,butithasaffectedwhatIlovetodo."

• "Ihadtogivemyjobupthisyearandhadtostopdrivingalso,Iamunabletodothehouseworkor gardening,Icannotwalkfarandthehospitalappointmentwaitinglistisbetween1to2years.Iam stillawaitingthepainmanagementteamandnoneofthemedicationisworkingforme."

• "Ihavetopay €185forarheumatologyconsultantasIhavebeen2yearswaitingforpubliconeand wastolditwillbeatleastanother2years. €180forpainmanagementconsultant.Icannotaffordto giveupmyjobashavetopayforallmymedicines,consultantandeverything.Nosupportavailable asyoucan’tgetontothepublicconsultantlist.Iwasreferredtophysiobymydoctorbutwascosting €100pervisiteveryfewweeksandthengymmembership.Ihadtogiveitupascouldn’taffordit."

• "Ican’taccessmybathduetotheheightofit,Ihaveashowerbutitisinthebath.Ican’taffordto takethebathout.Peoplearewantingfrom €3,500to €9,000totakeoutmybathandinstallashower tray.Moresupportisneededtopeoplelikeme."

• "NoteligibleforhelpbecausehavesavingswhichIneedtohelppayoffmortgageifIcan’tworkinthe morning/collegefundforkids."

• "I’veusedupmyunpaidleavesoifIhavetogooutsickagainIwillonlybeonstatepayment."

• "DifficulttocalculatethelossofincomeasIfeelthelossofincome/notbeingabletoworkhasa knockonaffectwithinthefamily-Veryluckytohavemedicalcard(afteranappeal)otherwisearthritis wouldhaveaverydifferentfinancialimpact."

• "Mymedicalcardwasrecentlytakenfrommeafterhavingitsincemydiagnosis.Thisisalifelong diagnosissoonlotsofmedicationtowhichnowIhavethefurtherworryofcostsofmedicationontop ofeverythingelse.Unnecessarystressinmyopinion."

• "Biologicmedicationandhealthylifestylechangestomydiet,exercise,sleep,andsociallifehavemade ahugedifferencetomyqualityoflife,andIfeelverywellnow."

• "Fatigueisamassivesymptomofarthritisthathasmoreofanimpactonmydaytodayactivitiesthan pain/mobilityissuesetc.fromarthritis."

• "Moreeducationonpsoriaticarthritiswouldbegood,likeanemployerpacktoshowhowtheycan helpanemployeeandalsooneforfamiliesasitcanbehardwhenyoumaylookokfromtheoutside butyouarestrugglinginpaindaily.Somesortofcardtocarrywithyou."

• "FatigueduetomethotrexateandRAneedstobehighlighted."

• "Icannotputintowordstheeffectmyconditionhasnotjustonmebutmyfamily.Idreadtheideaof goingonholidayeven,ascan’tmanagestairs/steps.Youcannotputapriceonqualityoflife.Ihave hadtenyearsofbeingrefusedcare,surgery.Wehaveamortgagethatishardtomaintainandacaron theroad.Idonothaveabluebadgeyet.Myspouseisalsogoingtoneedcaresoonasheisunwell. Nohelpevenwithlittlethings,unlessyoupaysomeone."

• "Ithinkamedicalcardshouldbeprovided-itisalong-termillnessanditisverycostlyanditis affectingmyworkability"

• "Notenoughfinancialsupportforlongtermillnessornotrecognisedassuchanillness.Moreinfoand helpneeded."

• "Longtermillnessshouldberecognisedthereisnocureyet.Allapplicationsaremeanstested.Idon’t havethesamequalityoflifewithincome.Iworkhardonmyhealthversusmypeerswhocanenjoy theirmoneyinotherways...alllong-termillnessesshouldgetprescriptionandbloodscoveredat minimum."

• "Myhusbandisself-employedsomuchhardertoallowmyselfgetbenefitsashewillbeassessedand isnearlyalwaysjustonitsodoesnotmakeiteasieroneitherofus.Sodon’tclaimthingsthentobe constantlyrejected.Iwillonlygetworsesothatdoesn’thelpinthelongrun."

• "Importanceofexerciseandmovementandperhapsaskingthecostsfactoredinwiththis."

• "Thankyouforhighlightingthefinancialsideofchronicillness.Itishugelyforgottenandaddsan enormousamountofstresstoanalreadystressfultime.Ithinkthereisahugelackofassistancefor thosewhocanworkbutnotabletoworkfulltime-Ifeelstuckbetweenpayingbillsandmortgage andnoaccesstoanyhelpbecauseyoucanwork,orwhensickleaverunsoutyouliterallyhaveno optionsforassistance,soIamleftwithnoalternativebuttoattempttoworkwhichcansometimesbe impossible,myworksuffersandmakesmefeelawfulasothershavetomakeupthedifference."

• "I’mnotawareofanygrantsorassistancethatIcangetandIhavenofamilytohelp.Myincome doesn’tqualifymeforamedicalcard,butahugeamountofmyincomeisspentoncostsassociated withmychronicconditions.Please,ifthereareassistanceorsupportsavailable,publicisehowtoaccess these."

• "Oneofthemostfrustratingsideeffectsalongwithpainisextremefatigue.WhenIwakeupafter sleeping7hours,itfeelslikeIhaven’tsleptatall.Ialsosufferwithdryeyes."

• "Lossofincomeduetolowenergy,painandflares."

• "Thewaitinglisttogetanappointmentwithaconsultantinthehospitalareoverayear.Ihadtoflyto myhomecountrytogetmyfirstdiagnosis."

• "Thankyou."

• "Lossoffriendships,lossofsocialinclusionduetofatigue."

• "Arthritisisachroniccondition.Iwillneverbeabletodiscontinuemymedication.Ihavemonths wherebymoneyistighter,particularlyifmyhusbanddoesn’thavework.SomemonthsIhaveto tryandstretchoutmytimebetweenmyinjections(Cosentyx)asIhaven’tgotthemoneyforthe drugspaymentscheme.Ithinkconditionssuchasarthritisandthemedication(suchashigh-tech prescriptionsasmentionedabove)shouldbefreeforpatients."

• "Myconditionhasresultedmeintakingastepbackatworkandwillmakemereluctanttogofor promotionthereforereducingmycurrentandfutureearningpotential.Ihavemadethisdecision myselfforthesakeofmylong-termhealthbutthisofcourseimpactsonsenseofselfandfulfilment whichisanotherhiddencostoflivingwitharthritis.IcountmyselfincrediblyfortunatethatIcould affordthecostofprivateconsultant/tests/physio/acupunctureetc.IdreadtothinkwhereIwouldbe ifreliantonthepublichealthfortheseservices."

• "Doesn’ttakeintoconsiderationexercise,type,durationandifyourconditionhasinfluencedtraining etc.Similarmorein-depthquestionperhapsonmentalhealthstrugglesduringconditionifitflares moreetc."

• "IntheUKIwaseligiblefordisabilityallowanceregardlessofmyincome.Thankfully,asIclaimed before1990,Iamstillinreceipt,butthismoneyisimportanttofundadditionalneedsIhavesuchas needingacar(notachoice)andotherhealthcare.Ifeelprivilegedtohavethis,somethingwhichmany inIrelanddonot."

• "Iwouldlovetoseearthritisrecognisedasalong-termillnesslikediabetes, €80amonthistoughat times."

• "Myemployerisveryhelpfulandsupportive,soIhavetheflexibilitytochangeshiftsandhoursdue tomyhealth.IcanworkextrawheningoodhealthandbankmyhourstousewhenIneedthem.This isnotthecaseformany.IwouldnotbeworkingasmuchifIwasinanunsupportivejob."

• "I’vejustbeendiagnosedwitharthritisthisyearinbothfeet,kneesandbothhands.Thepainisn’tbad asyetandhasn’treallychangedmylifewiththeexceptionofrunning,whichIlovedandhavehadto giveup.ThismeantIhadtopayforgymclasses,whichisanadditionalexpense.Notbeingpartof myrunninggroupalsoaffectsmymentalhealthasIlovedrunning,itwasmythingandovernightit wasgone.Itwasveryimportanttomephysicallyandsocially.Iwasdevastatedbymydiagnosis."

• "ApplicationformedicalcardorGPcarddeniedbecauseIapparentlyearntoomuchworking30hours onminimumwage.Can’taffordtogotothedoctorasoftenasneeded.ButIhavetoworkthismuch toaffordtobeabletogotoadoctoratall."

• "Mypainflaresupirregularly.Whenmypainisminimalornon-existent,Iamnotrestrictedinmy activitieswhatsoever.However,whenthepainincreases,therearetimesIamincapableofdoingeven themostbasicfunctionsandrelyentirelyonmypartnerandmymother."

• "Iwaswaiting2yearsformydiagnosis.Iwasfinallydiagnosed5monthsafterhavingmyfirstbaby, onlybecauseIwentprivate.Ispentthemajorityofmymaternityleavesickandunabletoenjoyitand careformybabyonmyownattimes."

• "None."

• "Thegovernmentistakingawaymydisabilityallowancebecausetheydeemmenotdisabledenough."

• "Thankyouforbringingawarenesstothissubject.Thehiddencostsareastraintomeandmyfamily. Itisastruggle."

• "Idon’tunderstandwhynooneadvocatesforparkingdiscsforpeoplewithinflammatoryarthritisand itisnevermentionedinasurvey.Thereareoutingswemissoutonbecauseofinadequateparking."

• "Appreciatesurveybuthopeamapofservicesisconsideredtoidentifygaps."

• "Arthritisaffectsyourlifeinsomanyways.Youlearntolivewithit,butitchangesyourphysicaland mentalhealthsomuchyouarenotthesameperson."

• "Waspleasedtodosurveywaitingtoseexinxhospitalasmymobilityisbad.Iamhopingforaknee replacementasmykneeisinchronicpain.Ifellonthebusandstairsafewtimesandhavedifficulty gettingoffthebus."

• "GPvisitcardshouldbeconsidered.RAshouldbeconsideredachronicillness"

• "Wishtheybringouttreatmentforfibromyalgiabesidestakingpainreliefandantidepressants."

• "Lossofcontactwithfriends.Beingabletoshop.Independenceandfreedomtakenaway."

• "Littleornocommunicationbetweenpublicservicesrelatedtothiscondition.Consultantindicatesthat orthopaedicshoesandphysiorequiredbutalmostnofollowup."

• "IhadbacksurgeryinJanuary2023andahipreplacementonthe28th.November2023.Ireceiveda medicalcardlastOctoberwhichwasagreathelpinsavingmoney.AfterthebacksurgeryinJanuary 2023IqualifiedforhomehelpinAprillastyearwhichamountstotwovisitsperweek,lastinglessthan 1hour."

• "ThereisnobuttontoallowmetostopandsavewhileIlookupinformation,eventhoughitwasstated thatfacilitywasthereintheintroduction."

• "Someaspectsofthesurveydoesnotquestionadditionalmedicalconditions,i.e.epilepsyhypothyroidism,cardiacrehabilitation,orgenderspecificconditionsforthearthriticpatient."

• "Myarthritisonlyflaresupnowandagainandcanlastforsomeweeksatatime."

• "Arthritismainlyaffectsmyhandsandgoutintoes.Thustheneedtodriveanautomaticcaranduse lighterbatteryoperatedgardenequipment"

• "Isufferwithspondyloarthropathyandfindasignificantamountofyourmonthlynewsdoesnot apply."

• "Verycomprehensive."

• "Ihavehadbothhipsreplacedinthelast3years."

• "DeathworriesmebutIwillremainstrongcomewhatmay."

• "AlthoughsufferingfromSjögren’sforover30yearsitisnotclassifiedasalongtermillnessformedical card."

• "Generalmobilityisnotgreat."

• "DuetomylongtermType1diabetes,sadlythereisnolong-termmedicationavailableinIrelandto reallyhelpme.WhichmeansthatIamsufferingmorewithmyarthritisfibromyalgia."

• "Biggestcostduetoarthritissofaroccurredin2022.ConsultantfeeandArthrosamidkneeinjection costing €2500.Nohealthinsurancehelpavailableforthisprocedure."

• "Iamlivinginmymother’shousewhilesheisinanursinghomewithdementia.Whenshepasses, theFairDealSchemewillevictmeandmyfamilyandsellmyfamilyhome.Iwillthenbehomeless andatthemercyofaLocalAuthorityhousingneedslist."

• "Ithinktheorganisationshouldlookintodeeperthefinancialimplicationsandtheoptionsaperson haswhensufferingwitharthritisinoneoftheircourses."

• "ImproveArthritishealthservicesandmoreallowancesforarthritismedicines."

• "WithlupusIhavehadtostopeverythingoutsideofworkinordertokeepworking."

• "Nothankyou"

• "Ithinkpublicpools/gymshouldbefreeorsignificantlyreducedforpeoplewithmedicalneedstouse them.Oratleastsomekindofagrantforthem.Also,althoughIcanwalkwellsomedaysthereare dayswhenIfinditverydifficulttomoveandadisabledparkingpasswouldbebeneficial."

• "Youdidn’taskaboutsportshobbyimpacts.Ican’trunanymoreduetomyknee."

• "Typesofclothingtowearespeciallyinthewinter.Regardingwarmth."

• "GoraibhmaithagatasuchtasCeistlann."

• "Ifindmymemoryisverypoorlackoffocusbrainfog."

• "Hardtofindtherightcombinationtocontrolmypain."

• "Goodsurvey."

• "Ithinkthegovernmenthatedisabledpeople."

• "MyapplicationtotheHSEfortheLong-TermIllnessCard(LTI)wasrejectedduetoarthritisnotbeing arecognisedillness/disabilityunderthescheme.IchallengedtheHSEusingrepresentationfromarea FiannaFailpolitician.Werecentlyreceivedaletterstatingthatthecriteriaandlistofillnesseshave notbeenupdatedontheLTIsince1975,nearly50years.WehavedecidedtochallengetheMinister ofhealthdirectlyonthisonthebasisthatsurelytheschemeshouldbeatleastataparwithmodern medicine.SurelytheLTIschemeshouldmatchthestatisticsofdisabilityinIrelandinsteadofbeing ignoredfornearly50yearsandnotupdated."

• "Whyareprescriptioncostsnotcoveredbylongtermillnessscheme,amedicalcardoraGPcardetc.?"

• "I’mintheearlystagesbuthavingalotofpainfromtimetotime."

• "Thesurveydoesnotasktheopinionoftreatmentordifferenttreatmentstimemedicationetc.between publicorprivatecare."

• "Ithinkyoushouldhavecollectedotherinforelatedtoworki.e.Ifyouarenotworkingduetoarthritis whenwasthelasttimeyoudidwork.Howmuchdidyouearnwhenyoudidwork.Isaythisbecause myhusbandisahighearnerwearecontinuallydiscriminatedagainstregardinggettingstatehelp. Disabledshouldmeandisabled.IsitnotbadenoughthatIamdisabledanddiscriminatedleftright andcentrebyhavingadisabilityinsociety.IpaidtaxesallmylifeuntilIcouldn’t.Myhusbandistaxed tothehilt.WearethousandsofEurooutofpocketeachyear.Nohealthinsuranceortaxrebatewill compensateusfairly,pluswepayforthehealthinsurance!Don’tgetmewrong,Iknowatwo-tiered systemiswronginthehealthcaresystembutit’snotmydoing.Neitheraremydisabilitiesmydoing. IhadtoalmostdegrademyselftogetInvalidityPension.Havingitgetsusnothingelsebecauseit’sall meanstested.Whyismyhusbandmadetosupportmeandotherswithhistaxes.I’mme,nothim.No matterhowmuchheearnsitisonebloodywageintoahousehold.Howdoweevergetaheadwith allthatgoesoutonme.PleaselobbyforaSwedishmodelsystem.Disabilityisdisability.Ishouldbe treatedthesameasothers."

• "Muchofmytotalsareestimatedandprobablylowerthantheactualamount,asIaminclinedto minimisetherealamountoftime,costandhelpIrequire.Iappreciatethelostearningsismore important,butitmightbeworthconsideringthecostof"fun"events(concerts,flights,etc.)thatare missedduetoarthritisconditions."