AVERT NEWSLETTER

A VERY EARLY REHABILITATION TRIAL

Biannual Newsletter Edition 15 August 2012

Churchill Fellowship Award - Julie Bernhardt

world and further their knowledge in their chosen field, before returning to make a real contributiontoAustraliansociety. Juliewilltakeaonemonthsabbaticalinearly 2013 to further research ways of enriching health care environments to improve brain recovery.Shewillbesuretokeepyouallupto datewithherfindings.CongratulationsJulie!

Weareverypleasedto announce that our director,Assoc.Profes sor Julie Bernhardt was recently awarded theveryprestigiousChurchillFellowship.The Churchill Trust was established in 1965 to honourthe memoryofSirWinstonChurchill by awarding overseas research fellowships knownas'ChurchillFellowships'. Since its inception The Churchill Trust has awarded Churchill Fellowships to more than 3,700 Australians who, like Churchill, are in novative,filledwithaspiritofdetermination and possess a strong desire to benefit their community. Churchill Fellowships allow recipients to de sign their own research project, travel the

Julie receiving her award from The Hon. Alex Chernov, Governor of Victoria

Inside this issue:

Churchill Fellowship Trial Progress/Message from our Director A Very Exciting Riding Trip AVERT in UKSite profiles Our Swedish Connections/Alan's Story Meet our Trial Manager/Connecting/Contact us Page 1 Page 2 Page 3 Page 4-5 Page 6-7 Page 8

Patients currently enrolled

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AVERT NEWSLETTER

Trial Progress
The AVERT trial started recruiting pa tientsbackin2006,andaimstodeter mineifearlyexerciseafterstrokewill: reducedisabilityandcomplications afterstroke improvetherateofrecoveryand thenumberofpeopleabletowalkun assistedafterstroke reducecognitiveproblemsandre sultinbetterqualityoflifeforstroke patients becosteffectivecomparedtocur rentstandardtreatmentofstroke.

There are inevitable staff changes at hospitals for many reasons including maternity and family leave, travel and other job opportunities. This helps to explain why over 1000 clinicians have been involved in AVERT so far! You might also be interested to learn that we now have over 60 babies born to staff who have worked on the AVERT trialandthisnumbercontinuestogrow! AlargetrialsuchasAVERTrequiresalot ofdaytodaymaintenanceinareassuch as data management, training and on going support of all involved staff, and endless lists of administrative tasks. To allow this support to continue we re mainveryactiveintryingtosecuresuf ficient funding to allow us to complete thetrialinthenext2years. Overthelast6monthsithasbeenexcit ing to celebrate 16 new UK hospitals joiningtheAVERTcollaboration.Allhos pitalsintheregionarenowfullytrained and most are now recruiting patients. We hope that the contribution from our northern partners will help us to reach our target number of patients withinourprojectedtimeframes.

Ourrecruitmentthermometer iswarmingup!

Whilstweareoverhalfwaywiththe trial,thereisstillconsiderableworkto dotogettoourfinalnumberof2104. Since our last newsletter we have reachedanothermajormilestonethe recruitmentofpatientnumber1300to the AVERT trial. The Austin hospital team, who have been involved in the trialfromtheverybeginning,recruited thecelebratedpatient. The ongoing commitment from our involved hospitals has been critical to the success of the trial so far. The number of hospitals who have re cruited patients to the AVERT trial is now51.

A message from our DirectorJulie Bernhardt

Researchers need to have courage andvision:thecouragetofollowtheir convictions and to not give up when theyfail(afairlyfrequentevent,espe cially when it comes to grant writing) andaclearvisionofabetterfutureif theirworkchangesthingsforthebet ter. AVERTisthefirstglobaltrialofareha bilitationinterventionforpeoplewith stroke. We thought big, and are de lightedthatthestrokecommunityand people affected by stroke have felt excitedbytheproject.Iamconstantly inspired by the AVERT community, an amazing group of committed individuals who share our vision. Now that we are welloverthehalfwaymarkinthetrial,it is getting very exciting. We do however need to finish the study as planned to ensure that the results of the trial are credibleandrespected. SoforthoseinvolvedinthetrialIaskyou toholdontothevisionofhowmuchbet ter care might be if we succeed. And to those who have participated or support thetrialinotherwaysIsayTHANKYOU!

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FundraisingA Very Exciting Riding Trip

On 31st May this year, the AVERT team rode around the Capital City TrailinMelbournetohelpraisesome additional funds for the AVERT trial. 16ridersralliedfriendsandfamilyto sponsor them to take part, donned lycra and helmets, and enjoyed a pleasant days ridetaking in the many wonderful sites of Melbourne alongtheway. The course took the riders meander ingalongtheYarraRiver,pastacon vent, farms and falls, before leading intotheheartofthecitysparksand gardens. A lunch stop at Southgate was followed by a tour of the Dock lands area, through the industrial West along the Maribyrnong Creek andpastthezooandthendownand alongtheMerriCreekandsurrounds. Our efforts were rewarded as we ended up raising a very impressive $8,745.00 for the trial. We were thrilled to have an additional $4,000 subsequently donated to the trial from a philanthropic source because ofourfabulouscyclingeffort. Themoneythatwasraisedwillbeput towards improving our data collec tionprocessesfortheAVERTtrial.We aimtomakeoursecurewebsiteeas ier for our research team and our hospitalstafftouse,whichinthelong runwillsaveustimeandmoney.Our hospitals in Australia, New Zealand, UK, Singapore and Malaysia use this essential tool every day. We are changingourupdatesbasedonfeed backfromouruserstomakethesys temmoreeasytouse. We will also use some of this money tofurthersupportoursiteswithaddi tional training and equipment. We hope that this in turn will help the hospitals to increase recruitment of stroke patients to the trial and help usreachourtarget.

Our efforts were rewarded as we ended up raising a very impressive $8,745

Picturedare:JanChamberlain,AlanEllery,FionaEllery,CarolynPhiddian,Annastrand,JennyKulin, CharlieSaxin,JulieBernhardt,TobyCumming,TonyCross,Aaron,JaniceCollier,Kit,andKarenBorschmann. (notpicturedCarmenLahiffJenkinsandQuinn)

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BIANNUAL NEWSLETTER EDITION 15

UK Hospital Profile Aberdeen Royal Infirmaryby Anu Joyson

At Aberdeen Royal Infirmary we have enjoyed beingpartoftheAVERTteamoverthepastyear andahalf.Thestudyhashelpedusinteractwith each other more and appreciate everyones dif ferentroleintheteam.Ithasalsoreinforcedhow every interaction with a patient can be made meaningful in terms of contributing to their re covery. additions to the team Mari Drummond and Suz anne Rattray as AVERT Nurses, Heather Gow as Re searchNurse,andDeirdreONeillasAVERTOccupa tional Therapist and they have made huge contribu tionstotheteam. WenowhavetwoAVERTbabies(anAVERTbabyisa babyborntoanAVERTinvestigator).

Our babies are Ellen Jennifer Robertson, Ourunithas16bedsandthereare daughterofJennyRobertsonourAVERTPT, over600acutestrokeadmissionsa whoisnowbackfrommaternityleaveand year,whichmeansthattherecanbe Ailsa Ann Davies, daughter of Joy Davies quiterapidthroughput.Alltheclinical Our AVERT ourOccupationalTherapist. staffareawareoftheAVERTstudyand nurses have been OurAVERTnurseshavebeenveryproactive contributetoidentifyingpotentialpa very proactive andhavehadagroupsessiontocomeup tients.Havingthestudystaffonduty coming up with withfreshideasofdifferentactivitiesthat atthesametimeasasuitablepatient couldbeusedfortheAVERTpatients.Ini comesincanbequitechallenging!Last fresh ideas on different tiallythepaperworktookabitofgetting yearwestruggledtorecruit,duetoa activities usedto,butwecanconfidentlysaythat combinationofstaffshortagesandbed nowwearemuchmorerelaxedwiththe pressures.AsourMainInvestigator trialandhaveworkedouthowtointegrate DrMaryMcLeodsays,itnowlookslike itintodailylifeintheunit. theplanetshaveallalignedandwe arebackinthegamewithregularre The scones baked by Dr Mary Joan Macleod at our cruitmentin2012. catchupmeetingprobablywentalongwaytowards helpingrecruitment! Theyearsawsomestaffchanges.Abigthankyou to Maggie Bruce (AVERT Nurse) Susan Cathcart DrRebeccaClarkeourblindedassessorhasbeena (AVERT Occupational Therapist) and Rebecca star,tryingtoseeallthepatientswithinthetarget Duncan (AVERT PT) for being part of AVERT and timeinwhatisalargegeographicalarea. helping us get going. They have now moved to differentdepartments.Wehavealsohadafew

Fromlefttoright:NicolaMurphy,JennyRobertson,DrRebeccaClarke,JacquiBell,AnuJoyson,Kathleen Bennett,DeirdreONeill,HeatherGow,DrJacquelineFurnaceandDrMaryJoanMacleod.

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UK Hospital Profile Yeovil District Hospitalby Debbie Neal

AsthePrincipalInvestigatorforoursiteIhavefound itcanbechallengingtomakesurethattheresearch paperwork is filled in and this has occasionally re quiredsomedetectivework!Ontheotherhandwe have had lots of enthusiastic staff dutifully complet ingpaperworkinthemiddleofthenightandonSun Although we are a relatively small hospital, the days. What has made life so much easier for me is stroketeamstrivestostayattheforefrontofbest thestrokeresearchteamsbrilliantBlindedAssessor practiceincludingactiveinvolvementinanumber EmmaJones,whotracksdownandfollowsupallour of stroke research trials so we already participants. In addition, the Research hadafantasticteamofstrokeresearch Nurses Donna Hayward, Sarah Board and nurses in place with good communica Hayley Smith who do most of the recruit tion links into the Emergency Depart ing,enterdataanddealwiththedataque ment and Stroke Unit. We have also It has also been ries that arise, are an integral part of the developed, and are researching, an a real privilege to team. The number of queries we get are meet so many innovative poststroke exercise, infor patients and their reducing after 16patientswe are getting mationandsupportprogrammeknown much better as a team at getting it right as ASPIRE. When we first heard about family members firsttime! theAVERTtrialwethoughtitwouldbe who are willing to sign up for an exciting opportunity to become in AstheAVERTPhysiothemostexcitingpart AVERT ... ofthetrialformeisthecreativityrequired volvedinamulticentrestrokerehabili to ensure participants have interesting, tationtrial. varied and relevant therapy at every ses After our sitetraining day with Rose sion. It has also been a real privilege to mary Morrison last autumn we were meet so many patients and their family members finally ready to start recruiting on November 30 whoarewillingtosignupforAVERTandtosharein 2011. We decided to take the approach that, as thoseearlydifficulthoursanddaysaftertheirstroke AVERTlookedchallengingtorecruitto,wewould Itiscommonthoughthatmanyrememberlittleor consider new arrivals with stroke for AVERT first nothingaboutthatbusytime! andthenotherstroketrialsiftheywereineligible WehavehadsomesadnessastwoofourAVERTpar for AVERT. Amazingly we recruited our first pa tientlateintheafternoononthatveryfirstday. ticipantshavepassedaway. TherewasthenabitofalulltilltheNewYearbut WithoutexceptionallofourAVERTparticipantshave since then we have managed to recruit steadily beenlovelyandinterestingpeople. twopatientsamonthapartfromMarchwhenwe found four despite only about 300 new stroke admissionseachyear. We found we had to increase the number of AVERTNurses(knownassecretsquirrels)onthe Stroke Unit to make sure there was at least one available on most shifts. We also had to identify and train a second physio to allow the AVERT Physio to attend offsite meetings and have an nual leave. We have learnt all sorts of ways to ensure that participants get the right amount of input without compromising the study or having other patients feeling that AVERT patients get moreattention! Yeovil District Hospital is an acute hospital lo cated in one of the larger towns in Somerset a ruralareaofEnglandknownforitsciderorchards, helicopter manufacture and a naval airbase nearby.

Lefttoright:DebbieNeal(AVERTPhysioandPI),JacquelineHarrup(AVERTparticipant),DonnaHayward (StrokeResearchNurse),HayleySmith(StrokeResearchNurse),PaulWood(AVERTparticipant)andseated infrontGeorginaPark(AVERTparticipant).

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AVERT NEWSLETTER

Our Swedish ConnectionsCharlie Saxin and Anna strand

We are two lucky Swedish physiotherapy stu dents from the University of Gothenburg who got the opportunity to spend 10 weeks at the FloreyNeuroscienceInstituteattheAustinhospi tal in Melbourne. With the help and support of theAVERTteamwewroteourfinalthesisforour degreeinphysiotherapy. terns between the two settings. Were the re habilitation patients really more active? We compared data collected from 104 stroke patients in rehabilitation wards at four differ ent hospitals in the West Gothia region, Swe den, with 86 patients at an acute stroke ward inStockholm,Sweden.Therewasnodifference inage,sexorabilitytowalkbetweenthefour hospitalgroups.Thedatawascollectedbyob serving each patient during a typical day be tween 8am and 5pm. In 10minutes intervals, thephysicalactivity,locationandsocialinter actionofthepatientwasascertained.

When a person suffers from a stroke they may needalongerperiodofrehabilitationaftertheir initial hospitalisation. The acute phase of hospi talisation is often where patients undergo suit able medical assessments and early treatment, butforlongertermongoingtherapythese patients often go to inpatient rehabilita tion. During their rehabilitation stay the Patients aimisforpatientstorelearnskillslostdue were also tothestroke.Thisoccursthroughdifferent observed to typesofactivitiesandtherapywithphysio be alone therapists,occupationaltherapists,speech more than therapistsandotherrehabilitationspecial 50% of the day at both ists.

Interestingly, the results did not match ourinitialthoughtthatpatientsinreha bilitation would spend more time in physicalactivitiesthanthoseinanacute setting. Patients in the acute setting spent more time in their bed doing no activityatall,butwhenlookingatmore demanding activities such as sitting settings. without support, standing and walking, Ourinitialthoughtwasthatpatientswould there was no difference between the be much more active when they had en acuteandtherehabilitationsetting.Pa tered the rehabilitation hospital, com tients were also observed to be alone paredtowhentheywereintheacutehos morethan50percentofthedayatboth pital.Inourthesiswewereinterestedinlooking settings. A major difference between the at stroke patients level of physical activity and groups was that patients in the rehabilitation socialinteractioninthesetwodifferentstagesof setting spent less time in their bedroom and their care: at the acute ward and during their moretimeintheunitsloungearea. rehabilitationperiod.Our aimwastodetermine if there was a difference in patient activity pat Manyfactorsmightcontributetohowactivea patient is: the hospital environment, the pa tientscognitivestatusandotherissuessuchas physicalandmentalfatigue.Itisthereforediffi culttodrawanyconclusionsastowhypatients in rehabilitation were not much more active thanthoseinacutecare.
Quote

Theresultsofourworksuggestthatthelevels of physical activity in rehabilitation might not beashighaswebelievethemtobe.

CharlieSaxinandAnnastrandourSwedish physiotherapystudents.

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Participant ProfileAlans story

Alanisinhisearlyseventiesandheissemi retired.AlanagreedtojointheAVERTre habilitation research trial when he first cametohospitalbecausehefelthecould help and that it would benefit other peo plewithstrokeinthefuture.ThisisAlans strokestory. IhadbeensleepingonmybackandasI awokeinthemorninginJanuary2011my firstthoughtwasthatsomethingwaslying across my stomach. Pulling back the cov ersIfounditwasmyleft arm,itwas de void of feeling and my left hand was not functioningatall. BeingonmyownatthetimeIphonedmy partner to let her know of this but was unabletocontacther,soIdecidedtoget dressed,whichwasdifficultwithonlyone functioningarm,andtohavesomebreak fast. It did not occur to me that I had had a stroke. I thought the lack of sensation would probably wear off, a bit like when yourhandorfootgoestosleep. After breakfast it was still the same so I rangmyGPssurgeryandspoketothere ceptionist. She told me to Call an ambulance straightawaywhichIdidandwastaken to the Alfred where I received expert at tentionfromthestrokeclinicteamofdoc tors, physiotherapists and occupational therapists. I was given many diagnostic tests which showed my right carotid artery was 80% blocked.AnMRIscanofthebrainshowed thatIhadindeedsufferedastroke,butit also showed that there was a growth on mypituitarygland. Ihadsurgerywithinafewweekstoclean out the artery. I am very fortunate that thestrokewasnotmoresevereandmade worsebymydelayinseekingmedicalat tention. I had a few problems getting my blood pressure stable, as it could be too high or too low. This has settled and I have a blood pressure unit at home. I checkmybloodpressureathomeoncea week,anddoadailyBPchartforaweek orsoformyGPbeforeIseehim.
It did not occur to me

Iwasfortunatehavingthediagnosticscan that I had had for the stroke so that the growth was a stroke found. It needed to be treated so I had surgery to remove the growth a few monthsafterthestroke. There were quite a lot of hospital and doctorsvisitsforseveralmonthsafterthe stroke. By Christmas 2011, I was feeling completely well again, back to doing the shopping, cooking, vacuuming, trimming the hedges and managing my invest ments. I am also making a point of exer cising by walking for 30 minutes every day.

A Very Early Rehabilitation Trial

Meet Fiona Ellery

Fionahasanursingbackgroundandearlyinher careerbecameinvolvedwithcoordinatingclini caltrialswithafocusonneuroscienceatanum berofhospitals.Shelatermovedtoindustryand was involved in the management of trials for various pharmaceutical companies. She joined theAVERTCentralteamastheAVERTTrialMan ager in 2006. Her role with the team includes the development of trial processes and the on going training and management of trial staff bothinAustraliaandinternationally. Fionahas2girlsandspendsmuchofherleisure time at netball, swimming and dance venues withthem!Occasionallyshegetstopotterinher garden. Fiona and her family re cently raised and trained aGuideDogpuppyfor18 months. A l t h o u g h Geanie did not make the grade it was a very rewardingexperienceand Geanie has now become amuchvaluedfamilypet!

Our Website
We have been updating our section of the FNI website and you can find out much more about the trial at: http://bit.ly/AVERT1

Contact Us
The Florey Institute of Neuroscience and Mental Health Melbourne Brain Centre - Austin Campus 245 Burgundy Street Heidelberg VIC 3084

Connecting
Would you like to Contribute?

This newsletter showcases some of the ways peo ple have become involved in the AVERT Research Program.Wethankyouallforyourcontributions.If you would like to assist in any way we would love tohearfromyou. PleaseemailJanChamberlain:avert@nsri.org.au orcallJaninMelbourneon(+613)90357000.
Would you like to Donate? Would you like to stay in touch?

Ifyouareinterestedindonatingtothe AVERT program, all donations are tax deductibleandcanbemadebycalling the Florey Neuroscience Institutes (Phone:+61390357000).

IfyouareaparticipantintheAVERTtrial,youmay want to give your contact details to your assessor at 12 months so that you can continue to receive furtherupdatesaboutthetrial.