PARKINSON & MOVEMENT DISORDER ALLIANCE SURVEY … · SUMMARY OF FINDINGS: Non-movement symptoms of...
Transcript of PARKINSON & MOVEMENT DISORDER ALLIANCE SURVEY … · SUMMARY OF FINDINGS: Non-movement symptoms of...
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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
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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
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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
20
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.