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PARKINSON&MOVEMENTDISORDERALLIANCESURVEYSELECTIONOFDATA:ForFullSurveyResultsContactPMDAlliance

Ifsharingthesesurveyresults,pleasereferenceandcreditParkinson&MovementDisorderAlliance,PMDAlliance.Thankyou.

OBJECTIVE&METHODOLOGYØObjective:Raiseawarenessofnon-movementsymptoms,suchashallucinationsanddelusions,associatedwithParkinson’sdisease(PD)amongcarepartnersandpatients.

ØStrategy:PartneredwithPMDAlliance,basedoutofArizona,andconductedasurveywiththeirmemberstounderstandtheirperceptionsandexperienceswithnon-movementsymptomsofPD.ResultsofthesurveywillbesharedwithPMDAlliancemembersandleveragedacrossmediatodriveawarenessofnon-movementsymptoms.

ØMethodology: ThesurveywasconductedusingSurveyMonkey, anonlinesurveyplatform.RespondentsmainlyconsistedofPDpatientsandcare partnersofpersonswithPD,whoeitherdidORdidnotsufferfrommovementrelatedsymptoms.Aseparatesetofquestionswasaskedtorespondentswhothemselvesorhadalovedonewhoexperiencednon-movementsymptomsvs.thosewhodidnotexperiencenonmovementsymptoms.

ØTargetAudience:ThesurveywasfieldedonlytoPMDAlliancememberswhichincludedpatients,carepartnersandothers.

ØSampleSize:Atotalof700*respondentstook thesurvey.Notallrespondentscompletedtheentirequestionnaire,hencesamplesizemayvaryforeachquestion.

ØFielddates:March19,2018– March31,2018

*PLEASENOTE:Thisincludespartiallycompletedresponses.

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ALLISON:Wedidnot filteroutthepartiallycompletedsurveysasPMDAlliancewaskeen

tohaveitsmembers’voiceheard.

SUMMARYOFFINDINGS:Non-movement symptoms ofParkinson Disease (PD)

vParkinson’sDisease:

q3of4respondents, acrosspatientsandcarepartners, feltthattherewasverylittletosomeunderstanding oftheimpactof Parkinson’sDisease(PD)ondailylivingamongfamily,friendsandacquaintances.

qMovementdisorderspecialists(70%)playedadominant role inthemanagementofPD,followedbyneurologists (39%).

qTherewasinterestinlearningmoreaboutnon-movementsymptomsofPD,particularlycognitivechallengesandsleepproblems. • Interestamongasmallergroupofrespondentson topicslikehallucinations(36%)anddelusions(28%)

vNon-MovementDisordersofParkinson’sDisease:

qMajorityoftherespondents (90%)reported experiencingnon-movementsymptoms(NMS)ofPD.• Asignificantlyhigherpercentageofcarepartners(97%)reported lovedonesexperiencingNMScomparedtoPDpatients(80%)themselves.

q53%respondents whoexperiencedNMSthemselvesorhadalovedonewhodid,reported anonsetofnon-movementsymptomswithin the first3yearsand72%within thefirst5years,post-diagnosisofPD.

qSleepproblems,cognitivechallenges,anxietyanddepressionwerethetop issuesreportedbyPDpatients/carepartnerswithlovedones,whoexperiencedNMSofPD.• CarepartnerswithlovedoneswithNMSofPDreportedsignificantlyhigherinstancesofcognitivechallenges,anxiety,depression,hallucinationsanddelusionsthanPDpatients

themselves.

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SUMMARYOFFINDINGS:Impactofnon-movement symptoms ofPD

qMorethanhalfthe respondents whoexperiencedNMSthemselvesorhadalovedonewhodid, reportedahighnegativeimpactofNMS onsleeping(60%),planning forfutureevents(55%)andpartner intimacy(53%).

qNearlyhalfthe respondents whoexperiencedNMSthemselvesorhadalovedonewhodid, ratedthemasmoretomuchmorechallengingto livewiththanmovementsymptoms.• Significantlymorecarepartners(58%)thanpatients(32%)whoexperiencedNMS,ratedNMSmoretomuchmorechallengingthanmovementsymptomsofPD.• Significantlymorepatients(60%)thancarepartners(37%)whoexperiencedNMS,ratedNMSlessoraschallengingasmovementsymptomsofPD.

qNearlyhalfthe respondents whoexperiencedNMSthemselvesorhadalovedonewhodid, feltthatNMShadahighnegativeimpactonqualityoflife.• Significantlymorecarepartners(66%)thanpatients(33%)whoexperiencedNMS,ratedahighernegativeimpactofNMSonquality oflife.• Significantlymorepatients(64%)whoexperiencedNMSthancarepartners(33%),ratedvery littletosomenegativeimpactof NMSonqualityoflife.

qRespondentswhoexperiencedNMSthemselvesorhadalovedonewhodid,wishedpeopleknewmoreabout thePDsymptoms(latentand overt)andthe lifechangingimpactofthedisease[OPENENDEDQ].• AhigherproportionofcarepartnerswhoselovedonesexperiencedNMSofPDthanpatients,wishedpeopleknewmoreaboutthelatentsymptomsandthelifechanging

impactofPD(differencebetweengroupswasnotstatisticallysignificant).

qRespondentswhoexperiencedNMSthemselvesorhadalovedonewhodid,wished friends(55%),adultchildren (53%)andother immediatefamilylikeparentsandsiblings(41%)knewabout theirexperience.• Significantlymorepatients(44%)thancarepartners(17%)wishedtheirspouse/partnerknewabouttheirexperience.• Significantlymorecarepartners(61%)thanpatients(44%)wishedtheirfriendsknewabouttheirexperience.

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SUMMARYOFFINDINGS:Insights fromrespondentswith lovedonehaven’texperienced non-movement symptomsofPD

vPDpatientsandcarepartnerswithlovedoneswhodidnot experiencenon-movementsymptoms:

qNearlyhalfoftherespondentswhodidnot experienceNMSthemselvesorhadalovedonewhodidn’t,wereeducatedaboutNMSbytheirmovementdisorderspecialistorneurologist.

q46%respondentswhodidnot experienceNMSthemselvesorhadalovedonewhodidn’t,felttheyshouldbeinformedaboutNMSattheverybeginning.• CarepartnerswhoselovedoneshavenotexperiencedNMSwereeithernotsure(33%)orpreferredtowait(34%)tolearnmoreaboutNMSofPD.

q13%respondentswhodidnot experienceNMSthemselvesorhadalovedonewhodidn’t,wishedtoknowspecifically aboutnon-motorsymptoms.

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DETAILEDANALYSIS

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SurveyrespondentsconsistedofagoodmixofcarepartnersandPwP

7

54%

41%

1% 4%

CarepartnertoapersonwithParkinson’s PersonwithPD Non-carepartner/familymembertoapersonwithParkinson’s

Other

Breakout of Respondentsn=700

Q1.Areyouapersonwith Parkinson’soracarepartnertoapersonwith Parkinson’s?

MovementDisorder SpecialistsplayedadominantroleinthemanagementofPDfollowedbyNeurologists

8

70%

39%

20%14%

8% 7%13%

Movementdisorderspecialist

Generalneurologist Familyphysician Generalphysician Anothermedicalspecialist

Psychiatrist Other(pleasespecify)*

Healthcare Provider(s) Seen for Parkinson’s Diseasen=656

*Otherspecifiedresponses included therapists, neurologists, acupuncturistsQ2.WhodoyouoryourlovedoneseeaboutParkinson’s?Pleaseselectall thatapply.

Majorityofrespondentsandtheirlovedonesreportednon-movementsymptoms

9

90%

10%

Yes No

PD Patient/Loved One Experienced Non-Movement Symptomsn=584

Q3.Haveyouoryourlovedoneeverexperiencednon-movement relatedsymptoms(e.g.,hallucinations, delusions, sleep,cognitive problems,anxiety,depression) relatedtoParkinson’s?

PDPATIENTS/LOVEDONESWHOEXPERIENCEDNON-MOVEMENTSYMPTOMS

10

Sleepproblems,cognitivechallenges,anxietyanddepressionweretopissues

11

84%75%

65%55%

41%

24%14%

Sleepproblemsorexcessivetiredness

Cognitivechallenges Anxiety Depression Hallucinations Delusions Other(pleasespecify)*

Non-Movement Symptoms Experienced by PD Patient/Loved OnePDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=581)

*Otherspecifiedresponses includeconstipation, apathy,nightmares, anger,andmoodswings.Q4.Which ofthe following non-movement relatedsymptoms haveyouoryourloved onewith Parkinson’severexperienced?Pleaseselectallthat apply.

Whilehallucinationsanddelusionswerelowerinprevalence,still2in5dealtwithhallucinationsand1in4withdelusions.

53%oftherespondents reportedanonsetofnon-movementsymptomswithin thefirst3yearspost-diagnosisofPD

12

26% 27%

19%

12%16%

Lessthanoneyear 1tolessthan3years 3tolessthan5years 5tolessthan7years Morethan7years

Number of Years After Diagnosis that PD Patient/Loved One Experienced Non-Movement Symptoms

PDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=579)

Q5.HowmanyyearsafterdiagnosisofParkinson’sdid youoryourlovedonebegantoexperiencethese non-movement symptoms (e.g.,hallucinations, delusions, sleep,cognitive problems,anxiety,depression) ?

72%experiencednon-movementsymptomswithin thefirst5years postdiagnosisofPD.

Nearlyhalffeltnon-movementsymptomsweremore/muchmorechallengingtolivewiththanmovementsymptoms

13

6%

16%

30% 28%21%

Non-movementsymptomsaremuchlesschallengingtolivewithcomparedtomotorsymptoms.

Non-movementsymptomsarelesschallengingtolivewith

comparedtomotorsymptoms.

Non-movementsymptomsareaboutthesametolivewith

comparedtomotorsymptoms.

Non-movementsymptomsaremorechallengingtolivewithcomparedtomotorsymptoms.

Non-movementsymptomsaremuchmorechallengingtolive

withcomparedtomotorsymptoms.

How Challenging Is It for PD Patient/Loved One Living With Non-Movement Symptoms

PDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=573)

Q6.Howchallenging isit livingwith non-movement symptoms relatedtoParkinson’sdisease(e.g.,hallucinations, delusions, sleep,cognitive problems,anxiety,depression) comparedtomotorsymptoms(e.g.,tremor,stiffness,slowmovement,falls)?

LessChallenging MoreChallenging

Abouthalffeltnon-movementsymptomshadahighnegative impactonthequalityoflife

14Q7.Onascaleof1-5below, howmuchdonon-movement symptoms (e.g.,hallucinations, delusions, cognitive problems,anxiety,depression) impact ordisrupt youoryourlovedone’squality oflife?

2%

14%

31% 33%

20%

1– Notatall 2– Very little 3– Some 4– Quiteabit 5– Verymuch

How Much Do Non-Movement Symptoms Impact/Disrupt the Quality of Life

PDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=570)

Majority(84%)feltnon-movementsymptomshadsometohighnegativeimpactonqualityoflife.

Sleeping, planning forfutureeventsandpartnerintimacyhadthehighestnegative impact

15Q8.Onascaleof1-5,fill outthe below tabletoindicate howtheonset ofnon-movement symptoms (e.g.,hallucinations, delusions, sleep,cognitive problems,anxiety,depression) associatedwith Parkinson’sdiseaseimpactordisrupt activities in youoryourlovedone’sdailylife.Pleaseselectoneresponseineachrow.

60% 53% 46% 41%24%

55%43% 42%

29% 27%

24%15% 21% 27%

24%

21%27% 29%

31%23%

16%

19% 31% 29%52%

23% 30% 29%40%

39%

13%2% 3% 1% 11%

Sleeping Partnerintimacy Runningerrandsoutsideofthe

home

Completinghouseholdchores(cooking/cleaning)

Completingself-care

(bathing/dressing)

Planningforeventsinthefuture

Makingplanswithfriendsorfamily

Socializingwithfriendsandfamily

Goingout toarestaurant

Goingtothemovies

ImpactofNon-MovementSymptomsonDailyLifeAmongPDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=552)

Highnegativeimpact Somenegativeimpact No/Lownegativeimpact Nocomment

Dailyroutines Planning/Socializing

Oftheactivitieslisted,only24%respondentsratednon-movementsymptomsashavingahighnegativeimpactoncompletingself-care.

54% 53%47%

41% 39% 35% 32%23% 22%

17%

5%

Movementdisorderspecialist

Spouseorlifepartner

Neurologist Friends Adultchildrenspecifically

Supportgroup OtherswithParkinson’sorothercarepartners

Anothermedicalspecialist

Otherimmediatefamily

Other(PleaseSpecify)

Noone

Who Do You Discuss Non-Movement Symptoms With

PDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=550)

Respondentsprimarily talkedtoHCP’s,immediatefamily(spouse,partner, adultchildren)andfriendsaboutnon-movementsymptoms

16*Otherspecifiedresponses includeneuropsychologist, Parkinson’s Better Half(Facebookgroup), acupuncturist, physicaltherapist forPD,gerontologist, familydoctor, hospice, naturopathic doctorQ9.Whodid youtalktoabout non-movement symptoms(e.g.,hallucinations, delusions, sleep,cognitive problems,anxiety,depression) relatedtoParkinson’sdiseaseandtheirimpact ondailylife?Pleaseselect allthatapply.

10%respondentslistedFacebookgroupParkinson’sBetterHalfamong“other”options.

74%oftherespondents felttherewasverylittle tosomeunderstandingoftheimpactofpdondailylivingamongfamily,friendsandacquaintances

17Q10.Onascaleof1-5below,howmuchdoyouthinkfamily,friendsorothersin youracquaintance understand the impactofParkinson’sdiseaseondailyliving?

7%

37% 37%

15%

4%

1– Notatall 2– Very little 3– Some 4– Quiteabit 5– Verymuch

How Much Do Friends/Family Understand the Impact of Parkinson’s Disease on Daily Living

PDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=545)

RESPONDENTSwishedpeople knewmoreaboutthesymptomsofpd(latent/overt)anditslifechanging impact

18**Latentsymptomsincludecognitive changes,personality changes,lackofinterest/apathetic, andgeneralreferences toinvisiblesymptoms.##Overtsymptomsincludetremors, exhaustion, gastro/heart issues,lackofenergy,andslowedspeech.Q11.What,ifanything,doyouwishpeople knewabout yourexperiencewith Parkinson’s/being acarepartnerforsomeonewith Parkinson’s?

“Thevariabilityinsymptoms,andthatithasnon-motorsymptomsthatarenotalways visibletoothers.”

ItisverydifficultlivingwithapersonwithParkinson’swithnon-motorsymptomsbecauseyouneverknowwhatisgoingtohappennext.”

“Thatthenon-motorsymptomsarejustasdebilitatingorevenmoresothanthemotorsymptoms.ThatParkinson’scanbeaveryisolatingdisease.”

“Iwishtheyknewthehardworkweeachdoeverydaytojustgetoutofbed. I'mtiredofpeoplesaying,"justdothisorjustdothat".Theyhavenoideatheeffortittakes.”

“Icanfallonalevelsurface andwifegetsupsetwithme,andittakesmeseveralminutestogetmyselfup.itslikemymusclesforgethowtofunction.”

“Abetterunderstandingofallthesymptomsofthedisease andthehugefluctuationsfromhourtohour,daytoday,monthtomonth.”

CarePartner

CarePartner

CarePartner

Patient

CarePartner

Patient

Respondentswished friends,adultschildrenandotherimmediate familymembersknewmoreabouttheirexperience

19Otherspecifiedresponses included employers,co-workers, GPs,dieticians, painspecialist, medicalstaffatassistedlivingfacilities, health advocates,policymakers.Q12.Whospecifically doyouwishknewabout yourexperiencewith Parkinson’s/being acarepartnerforsomeonewith Parkinson’s? Pleaseselectallthat apply.

55% 53%41%

27% 24% 19% 15% 13% 12% 8% 8%

Friends Adultchildrenspecifically

Otherimmediatefamily

Spouseorlifepartner

Movementdisorderspecialist

Neurologist OtherswithParkinson’sorothercarepartners

Anothermedicalspecialist

Supportgroup Noone Other(PleaseSpecify)

Who Do You Wish Knew About Your Experience With PD/Being a Care Partner for Someone With PD

PDPatient/LovedonewhoExperiencedNon-MovementSymptoms(n=530)

PwP/ONESWHODIDNOTEXPERIENCENON-MOVEMENTSYMPTOMS

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Two-thirds felttherewasverylittle tosomeunderstandingoftheimpactofPDondailylivingamongfamilyandfriends

21Q13.Onascaleof1-5below,howmuchdoyouthinkfamily,friendsorothersin youracquaintance understand the impactofParkinson’sdiseaseondailyliving?

3%

24%

42%

22%

9%

1– Notatall 2– Very little 3– Some 4– Quiteabit 5– Verymuch

How Much Family/Friends Understand Impact of PD on Daily Living

PDPatients/LovedOneswhodidNOTExperienceNon-MovementSymptoms(n=69)

Findingsareconsistentacrosspatientandtheircarepartnerswhohaveexperiencedbothmovementandnon-movementsymptoms.

Nearlyhalftherespondentswereeducatedaboutnon-movementsymptomsbytheirNeurologist/MovementDisorder Specialist

22Q14.Didyourneurologist ormovement disorderspecialist educate youoryourlovedoneabout non-movement symptoms(e.g.,hallucinations, delusions, sleep,cognitive problems, anxiety,depression) ofParkinson’sdisease?

49% 51%

Yes No

Did the Neurologist/Movement Disorder Specialist Educate You/Loved One on Non-Movement Symptoms

PDPatients/LovedOneswhodidNOTExperienceNon-MovementSymptoms(n=67)

46%oftherespondents felttheyshouldbeinformedaboutnon-movement symptomsattheverybeginning

23

46%

21%12%

1%

19%

Attheverybeginning Onlyafteronsetofsymptoms AfterlivingwithPDforafewyears

Idon’tthink thephysicianneedstoeducateonthisaspect

Notsure

When Should Physician Provide More Information About Non-Movement SymptomsPDPatients/LovedOneswhodidNOTExperienceNon-MovementSymptoms(n=67)

Q15.Whendoyouthink thataphysician should providemoreinformation about non-movement symptoms (e.g.,hallucinations, delusions, sleep,cognitive problems,anxiety,depression) ofParkinson’sdisease?

33%ofrespondentsdidNOTwishtobeeducatedaboutnon-movementsymptomsattheverybeginning

BothPwP andCarePartnersknewaboutnon-motorandmixedmotor/non-motorPDsymptoms

24*Otherspecifiedresponses primarilyincluded nocommentorN/A.Q16.What,ifanything,doyouwishyourphysician would havetold yousoonerabout non-movement symptoms (e.g.,hallucinations, delusions, sleep,cognitive problems,anxiety,depression) ofParkinson’sdisease?*Lowbasesizes,pleaseconsider directional

12% 10% 8%4%

22%

6%

39%

18% 18%

9%

0% 0% 0%

55%

Alreadywell-informed Non-motorsymptoms Mixedmotor/non-motorsymptoms

Medication Nothing Don'tknow Other*

Information thePDCommunityWishtobeInformedSooner (OPENENDS)

PDPatientswhodidNOTExperienceNon-MovementSymptoms(n=51) CarePartners/LovedoneswhodidNOTExperienceNon-MovementSymptoms(n=11*)

Thetop2non-movement symptomsthatrespondentswishedtolearnmoreaboutwerecognitivechallengesandsleepproblems

25

72%67%

48%42%

36%28%

Cognitivechallenges(troublewithfocusor

memory)

Sleepproblemsorexcessivetiredness

Anxiety Depression Hallucinations(seeing,hearing,feelingorsensingthingsnooneelsecan

detect)

Delusions(falsebeliefs,paranoia)

Which Non-Movement Symptoms you Would Like to Learn Aboutn=585

Q17.Would youliketo learnmoreaboutnon-movement symptoms associatedwith Parkinson’sdisease?Pleaseselect allthatapply.