This is a repository copy of Outcomes of reablement and their measurement : findings from an evaluation of English reablement services. White Rose Research Online URL for this paper: https://eprints.whiterose.ac.uk/147719/ Version: Published Version Article: Beresford, Bryony Anne orcid.org/0000-0003-0716-2902, Neves De Faria, Rita Isabel orcid.org/0000-0003-3410-1435, Mayhew, Emese Tunde et al. (5 more authors) (2019) Outcomes of reablement and their measurement : findings from an evaluation of English reablement services. Health and Social Care in the Community. pp. 1438-1450. ISSN 1365-2524 https://doi.org/10.1111/hsc.12814 [email protected]https://eprints.whiterose.ac.uk/ Reuse Items deposited in White Rose Research Online are protected by copyright, with all rights reserved unless indicated otherwise. They may be downloaded and/or printed for private study, or other acts as permitted by national copyright laws. The publisher or other rights holders may allow further reproduction and re-use of the full text version. This is indicated by the licence information on the White Rose Research Online record for the item. Takedown If you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing [email protected] including the URL of the record and the reason for the withdrawal request.
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This is a repository copy of Outcomes of reablement and their measurement : findings from an evaluation of English reablement services.
White Rose Research Online URL for this paper:https://eprints.whiterose.ac.uk/147719/
Version: Published Version
Article:
Beresford, Bryony Anne orcid.org/0000-0003-0716-2902, Neves De Faria, Rita Isabel orcid.org/0000-0003-3410-1435, Mayhew, Emese Tunde et al. (5 more authors) (2019) Outcomes of reablement and their measurement : findings from an evaluation of English reablement services. Health and Social Care in the Community. pp. 1438-1450. ISSN 1365-2524
Items deposited in White Rose Research Online are protected by copyright, with all rights reserved unless indicated otherwise. They may be downloaded and/or printed for private study, or other acts as permitted by national copyright laws. The publisher or other rights holders may allow further reproduction and re-use of the full text version. This is indicated by the licence information on the White Rose Research Online record for the item.
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If you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing [email protected] including the URL of the record and the reason for the withdrawal request.
Health Soc Care Community. 2019;00:1–13. | 1wileyonlinelibrary.com/journal/hsc
Reablement–orrestorativecare–isacentralfeatureofmanywesterngovernments’approachestosupportingandenablingolderpeopletostayintheirownhomesandminimisedemandforsocialcare.Existingevidencesupportsthisapproachalthoughfurtherresearchisrequiredtostrengthenthecertaintyofconclusionsbeingdrawn.Incountrieswherereablementhasbeenrolledoutnationally,anadditionalresearchpriority – to develop an evidence base onmodels of delivery – is emerging. ThispaperreportsaprospectivecohortstudyofindividualsreferredtothreeEnglishso-
cialcarereablementservices,eachrepresentingadifferentmodelofservicedelivery.Outcomes includedhealthcare‐andsocialcare–relatedqualityof life, functioning,mental health and resource use (service costs, informal carer time, out‐of‐pocketcosts).Incontrastwiththemajorityofotherstudies,self‐reportmeasureswerethepredominantsourceofoutcomesandresourceusedata.Furthermore,nopreviousevaluation has used a globalmeasure ofmental health.Outcomes datawere col-lectedonentrytotheservice,dischargeand6monthspostdischarge.Anumberofchallengeswereencounteredduringthestudyandinsufficientindividualswerere-
cruitedintworesearchsitestoallowacomparisonofservicemodels.Findingsfromdescriptiveanalysesofoutcomesalignwithpreviousstudiesandpositivechangeswere observed across all outcome domains. Improvements observed at dischargewere,formost,retainedat6monthsfollow‐up.Patternsofchangeinfunctionalabil-itypointtotheimportanceofassessingfunctioningintermsofbasicandextendedactivitiesofdailyliving.Findingsfromtheeconomicevaluationhighlighttheimpor-tanceof collectingdataon informal carer timeandalsodemonstrate theviabilityofcollectingresourceusedatadirect fromserviceusers.Thestudydemonstrateschallenges,andvalue,ofincludingself‐reportoutcomeandresourceusemeasuresinevaluationsofreablement.
Over recentyears reablement–or restorativecare–has increas-inglyfeaturedwithinsomewesterngovernments’approachestoad-
dressingthecareandsupportneedsofolderpeople(Aspinal,Glasby,Rostgaard,Tuntland,&Westendorp,2016).Deliveredinaperson'susualplaceofresidence,reablementisatime‐limited,person‐centredintervention.Itsaimistorestoreself‐careanddailylivingskillsandtosupportaccessto,orreconnectionwith,thelocalcommunityandsocialandleisureactivities(Tessier,Beaulieu,McGinn,&Latulippe,2016). Individuals are referredwhen there is a lossof functioningand independence inmanagingactivitiesofdaily livingthat, if leftunaddressed,willresultinincreaseddemandsforcommunity‐basedservices,ornecessitateamovetoresidentialcare(Cochraneetal.,2016;NationalAuditofIntermediateCare,2018;NationalInstituteForHealthAndCareExcellence,2017).Thismayarisefollowinganacuteinpatientstayordueto(gradual) lossofabilities,motivationand confidence to engage in andmanage everyday activities andtasks.Differencesexist–withinandbetweencountries– inmod-
elsof servicedelivery (e.g. skillmix,organisational setting,opera-tionaldeliverycharacteristics;Aspinaletal.,2016;Beresfordetal.,2019).Inaddition,theremaybedifferencesintheextenttowhichprovision fullyadheres to theconceptof reablementand includesreconnectingwithsocialnetworks(socalled“comprehensivereable-
ment”),orislimitedtofunctionalreablementBeresfordetal.(2019).In England, reablement comprises an assessment by a specialist
practitioner during which person‐centred goals are co‐created withthe service user. This is followed by a time‐limited period (typically4–6weeks) inwhichtrainedworkersconducthomevisits inordertosupporttheachievementofthesegoalsthroughtheregainingoffunc-tionalskillsand/oridentifyingnewwaysofcarryingouttheiractivitiesofdailyliving.Thefocusison“doingwith”,incontrasttothetraditional,home‐careapproachof“doingfor”or“doingto”(Metzelthinetal.,2017;Resnicketal.,2016).Frequencyanddurationofhomevisitsisexpectedtodecreaseovertheinterventionperiod.Equipmentorminorhousingadaptationsmaybesourcedtosupportachievementofoutcomes.
Existingevidence indicates reablement results in improved func-tioning,qualityof lifeand/orreduceddemandsonservices.Todate,however, evaluations have not been of sufficient quality for robustconclusions to be drawn regarding effectiveness and cost‐effective-
nessand theneed forhigh‐quality trials is acknowledged (Cochraneetal.,2016;NationalInstituteForHealthAndCareExcellence,2017).Investmentinreablement–atapolicyandresourcelevel–addstothepressingneedtoimproveandextendtheexistingevidencebase.Thispaper reportsaprospectivecohort studyofolderpeople re-
ceivingreablementinEngland.ItwascommissionedbytheEnglishgovernment'sNational Institute forHealthResearchwho issuedacallforproposalstoinvestigatedifferentmodelsofservicedelivery.Thiswas in response to the fact that, inEngland, reablement ser-vicesareuniversalbutdifferentdeliverymodelsexist(Parker,2014).As reported in themethods section, the studydidnot fulfil all its
Significant under‐recruitment in two research sites (n = 14
and29, respectively,comparedto139 in thirdsite)duetoservicethroughputbeingmuchslowerthananticipated,andnooptiontoex-tendthestudyoraddnewresearchsites,meantacomparisonofser-vicemodelswasnotpossible.(Foradetailedaccount,seeBeresfordetal.,2019).However,adescriptiveanalysisofcombinedoutcomesandresourceusedatawasconducted.
Ethical approval was received from a National Health Service(NHS) Health Research Authority Research Ethics Committee(Reference:15/NE/0299).
The study recruited from three statutorily funded adult socialcare reablement services located in different regions in England.RecruitmenttookplacebetweenOctober2016andMay2017.
2.3 | Participants
Study inclusion criteria were that participants had been ac-cepted intooneof the reablement services acting as a researchsite.Individualslackingthecapacitytogiveinformedconsent(asjudged by reablement service assessors or research team)wereexcluded.
2.4 | Recruitment
Atthereablementservice'sassessmentvisit (takingplacewithin3daysofreferral), theassessorbriefly introducedthestudyandsought consent for the research team to make contact. Thoseconsenting to contact received a telephone call from the re-
search team (i.e. the “local” researcherbased in researchsite). Ifagreed,ahomevisitwasarrangedtofurtherdiscussparticipationand, ifwilling, takeconsentandcollectT0data.A£10shoppingvoucher (multi‐store, high street/online) supported recruitmentandretention.
2.5 | Data collection
Self‐reported outcomes data were collected via home visits.Participantschosewhethertoself‐complete,orhavemeasurespro-
cludeself‐reportedoutcomes,(b)thelackofresearchinfrastructurewithinreablementservicesallowingonlyminimaldatacollectionbypractitioners; (c) a previous evaluation of English reablement ser-vices(Glendinningetal.,2010).
lems;Brooks,1996;Herdmanetal.,2011;TheEuroQolGroup,1990).HRQoLprofileswere converted intoa single index scoreusing theUKtariff(Devlin,Shah,Feng,Mulhern,&Hout,2018).Indexscoresrangefrom−0.285(forextremeproblemsonalldimensions)to0.950(noproblems inanydimension). Inaddition,avisualanaloguescale
2.6.2 | Adult Social Care Outcomes Toolkit's SCT‐4
Astandardisedself‐reportmeasureassessingsocialcare–relatedquality of life across eight domains: control over daily life; per-sonal cleanliness and comfort; food and drink; personal safety;socialparticipationandinvolvement;occupation;accommodationcleanlinessandcomfort;anddignity(Malleyetal.,2012).Foreachdomain, respondents select one of four options: ideal state, noneeds, someneedsandhighneeds.The total score isconvertedintoanindexscoreusingpreference‐basedweightsvaluedusingbest–worstscalingandtimetradeoffinanadultgeneralpopula-tionsample.
2.6.3 | General Health Questionnaire
A self‐report measure in which respondents rate current mentalhealthcomparedtotheirusualstate.Itemscoverinabilitytocarryoutnormalfunctionsandtheappearanceofnewanddistressingemo-
tional states (Goldberg,1972).Foreach item, respondentschooseoneoffourresponseoptions:betterthanusual,sameasusual,lessthanusualandmuchlessthanusual.Thestandardmethodofscor-ingwas usedwith positive answers (better/same as usual) scoredas0andnegativeanswers(less/muchlessthanusual)scoredas1.Themaximumtotalscoreis12,withahigherscoreindicatingmoreseverementalhealthdifficulties.
2.6.4 | Barthel activities of daily living index
A practitioner‐completed 10‐item measure of functional statuscovering10domainsofdaily living: feeding,bathing,continence(bladder,bowels),transfers(bed/chair,toandfromtoilet),mobility(levelsurface,stairs)andpersonalgrooming(Mahoney&Barthel,1965).Eachdomainisratedonascalefromnofunctioningtoin-
dependentfunctioning.Thenumberofpointsonthescalevariesbetween items and ranges between 2 and 4 points. Scores as-signedtoeachpointonthescaleincreaseby5‐pointintervals(e.g.0–5–10–15).Totalscorescanrangefrom0(nofunctioning)to100(independentfunctioning).
2.6.5 | Nottingham Extended Activities of Daily Living Scale
Aself‐reportmeasureof functionalabilitywith respect tomobility,kitchen tasks, domestic tasks and leisure. Comprising 22 items, itcapturesawider assessmentof functioning than theBarthel Index(Nouri&Lincoln,1987).Respondentsevaluate theextent towhichthey can accomplish each functional task scoring 0 (not able/withhelp)or1(ontheirown/ontheirownwithdifficulty).Atotalscoreiscalculated rangingbetween0 (no independence)and22 (maximumindependence).
4 | BERESFORD Et al.
2.7 | Resource use
A self‐report questionnaire (Services and Care PathwayQuestionnaire[SCPQ])developedforthestudycollecteddataon:use of hospital, community healthcare, social care and voluntaryservices, informal (unpaid) care and private out‐of‐pocket costs.Total costs were calculated by multiplying the number of timeseachresourcewasusedbyitsunitcostforthefinancialyear2016.Further information on the development of the SCPQ and howcostswere calculated are available (Beresford et al., 2019). Sincetheperiodofrecallwasdifferentateachfollow‐uppoint,resourceuseandthecostswererescaledtomeanuseperweek.
2.8 | Statistical analysis
STATA14.2wasused(StataCorp,2015).Descriptivestatisticsforsocio‐demographic characteristics, outcome measures and re-
sourceuseandcostsatT0,T1andT2weregenerated.Meansandstandarddeviations (SD)were reported forcontinuousvariablesand counts andpercentages for categorical variables. The char-acteristicsofindividualsretainedtothestudyatT1andT2 were
compared to those lost to follow‐upusing t test for continuousvariablesandPearson'sChi‐squaretestforcategoricalvariables.Wealso tested fordifferences inoutcomes atT0, T1 andT2 ac-
A descriptive analysis of outcomes generated mean andstandard deviation statistics for total scores for T0, T1 and T2
samples. A domain‐level descriptive analysis of quality‐of‐lifeoutcomeswasalsoconducted.ForEQ‐5D‐5L,responseoptionswere collapsed into three categories of perceived severity ofproblems: severe/extreme, moderate or no/slight. For AdultSocialCareOutcomesToolkit(ASCOT)SCT‐4,responseoptionswere collapsed into two categories of perceived need: needsmet (ideal state or no needs reported) or unmet needs (someneedsorhighneeds).
Thenextstagewasadescriptiveanalysisofchangesinout-comeforthosewheredatawereavailableforthefollowingpairsoftimepoints:T0toT1,T0toT2,T1toT2.First,meanandstandarddeviationstatisticsweregeneratedfortotalscoresandtestsofstatistical significance and effect size calculated. Second, weexploreddirectionofchangeinoutcomesatanindividuallevel.Studyparticipantswereallocatedtooneofthreecategories:im-
proved, no change, deteriorated. Frequency countswere usedto describe the distribution of the sample according to thesecategories.
Wealsoexplored the impactofmodeofdata collectiononresponse rate for outcomes collected atT2 (where some studyquestionnaireswere delivered postally rather than via a homevisit).
We considered a p‐value of 0.05 to be statistically sig-
nificant and provided 95% confidence intervals (CI) for theestimates.
3 | RESULTS
3.1 | Recruitment, retention and impact of mode of data collection
terested”(67.6%)and“notfeelingwellenough”(18.7%).T1datacol-lectionwasnotachieved for34participantsdue to researchsitesfailingtonotifytheresearchteamaboutadischarge.Takingthisintoaccount,T1retentionwheredatacollectionwasattemptedwas84%(128/152).LosstothestudyatT1wasprincipallyduetoaparticipanthavingdiedortheresearcherbeingunabletore‐establishcontact.Thismayhavebeenduetodeath,readmissiontohospitalormovetoresidentialcarewhichresearchsiteswereunawareof,ordidnotreport to the research team.Eightparticipantschose towithdrawatthisstage.
occurred after the study closed. Lossof local research staff as-sociated with closure of the study meant postal administrationofquestionnaireswasusedforsomestudyparticipants.There-
91%) and involved 12 sessions on average per week (SD = 7). InEngland,sixweeksis,formally,themaximumdurationforwhichser-viceusersdonothavetopayfortheservice.Actualdurationwassimilaracrossresearchsitesandwas,onaverage,3.9weeks.
3.4 | Outcomes
Therewerenostatisticallysignificantdifferencesatbaseline(T0)inmeanoutcomescoresfortherecruitedsampleandthoseretainedatT1,norbetweenthosereferredforsupporttoreturnhomefromhos-pitalversuswherethereferralwastosupport remainingathome.ThoseretainedatT2hadsignificantlyhigher(better)scoresontheBarthelIndex,NottinghamExtendedActivitiesofDailyLivingScale(NEADL) scale andGeneral HealthQuestionnaire (GHQ‐12) at T0
Aroundtwo‐thirdsreportedsevereormoderateproblemswithself‐care,withaslightlysmallerproportionreportingproblemswithpain/discomfort. The domain where the fewest respondents reportedproblemswasanxiety/depression.
AtT1,aroundhalfofthesamplereportedno/slightproblemswithusualactivitiesandmobility,andmorethanthreequartersreportedno/slight problems with self‐care. These proportions remainedaround the sameatT2. Theproportionsof respondents reportingsevere ormoderate difficultieswith pain/discomfort and anxiety/depressionarerelativelystableacrossthesetimepoints.
Compared to T0, at T1 a statistically significant improvementinmeanscorewasobserved foralloutcomemeasuresexcept theNEADLscale.ComparingT0andT2,astatisticallysignificantdiffer-enceinmeanscoreswasobservedforalloutcomemeasures.
Table4presents thedirectionofchange inscores in termsof theproportions of participantswhose scores improved, remained thesameordeteriorated.
At T1, an improvement in EQ‐5D‐5L (84.4%), ASCOT SCT‐4(72.7%),BarthelIndex(65.5%)andGHQ‐12(69.5%)scorescompared
toT0wasobservedinalargemajorityofthesample.TheproportionofthesamplewhereNEADLscalescoreshadimprovedwassmaller(55.5%),butremainedatoverhalfofthesample.Acrossalloutcomemeasures,adeteriorationasopposedtonochangewasmorelikelytobeobservedbetweenT0 andT1.Deteriorationwas least likelytobeobservedwithrespecttoEQ‐5D‐5Lscores(12.5%),andmostlikelytobeobservedforontheNEADLscale(30.5%).
BetweenT0andT2,themajorityofparticipants’EQ‐5D‐5LandASCOT‐SCT4 scores had improved (82% and 71.2%);with the re-
mainderdeteriorating. In termsof theNEADLscale,overhalfhadimprovedscores(54.7%)andjustunderathird'sscoreshaddeclined(32.8%).Finally,improvedscoresontheGHQ‐12wereobservedforovertwo‐thirdsofthesample(67.7%);oftheremainder,equalpro-
IntermsofdirectionofchangeinoutcomesbetweenT1andT2,improvements in around half of study participants’ scores on theEQ‐5D‐5L (51%), ASCOT SCT‐4 (48.9%) and GHQ‐12 (50%) wereobservedatT2.Withrespecttoself‐reportedfunctioning(NEADL),improvedscoreswereobservedfortwo‐thirds(65.4%)ofstudypar-ticipantsatT2.AdeteriorationatT2waslesslikelytobeobservedontheGHQ‐12(24%)thanEQ‐5D‐5L(42.9%)andASCOTSCT‐4(44.7%).
TA B L E 2 DifferencesinoutcomescoresobservedT0,T1andT2
T0 T1 T2
EQ‐5D‐5L(2017tariff)
Samplesize (n=186) (n=128) (n=61)
Mean(SD) 0.51(0.23) 0.67(0.24) 0.69(0.26)
EQ‐VAS
Samplesize (n=185) (n=128) (n=61)
Mean(SD) 51.83(20.23) 63.52(20.46) 68.77(20.55)
ASCOTSCT‐4
Samplesize (n=184) (n=128) (n=59)
Mean(SD) 0.71(0.17) 0.82(0.15) 0.80(0.17)
BarthelIndex
Samplesize (n=130) (n=133)
Mean(SD) 71.69(17.02) 80.45(20.28)
NEADLscale
Samplesize (n=184) (n=128) (n=64)
Mean(SD) 9.65(5.48) 10.40(4.46) 13.22(6.27)
GHQ‐12
Samplesize (n=185) (n=128) (n=62)
Mean(SD) 4.14(2.85) 2.42(2.60) 2.10(2.65)
| 7BERESFORD Et al.
3.6.1 | Resource use
Resource use was more frequent before reablement, particularlyovernighthospitalisationsandcareservices,seeTable5.Somepar-ticipantshadhomeadaptations,generallyminor.Equipmentacqui-sitionwasmore common, typicallybeforeandduring reablement.Voluntaryserviceusewasveryrarethroughoutthestudy.Informalcareprovisionwasfrequentbutreducedovertime.
3.6.2 | Costs
Costsofhealthcareandsocialcarefallingonthepublicsectorweregreatestprior to reablement,witha large reductionobserved inthecostofhospitalovernightstays(Table6).Out‐of‐pocketcostsweregenerallyverysmallthroughoutthestudy.Informalcaretimewasamajorcost,particularlypriortoandduringreablement.
4 | DISCUSSION
Challenges experiencedwith study set‐up and recruitment – pre-
dominantly due to the lack of research support structureswithinEnglish social care services and slower than anticipated service
quently) used. In contrast tomost studies, constraints in researchfundingandresearchcapacitywithinservicesmeantwereliedpri-marily on self‐reported outcomes.We also developed a new self‐reporttooltoassessresourceuse.Finally,differentmodesofdatacollectionweretested.
4.1 | Findings on reablement outcomes and implications for future research
F I G U R E 2 EQ‐5D‐5Ldomains:distributionofsampleintermsofperceivedseverityofproblem:entryintoservice,dischargeand6monthspostdischarge
8 | BERESFORD Et al.
effect, was observed at discharge with this improvementmain-
tainedat6monthspostdischarge.Asimilarpatternwasobservedfor social care–relatedqualityof life (ASCOTSCT‐4) though theeffectsizewasonlymedium.Wenotethatnoguidancecurrentlyexists onwhat constitutes aminimal important change in indexscore for thesemeasures with this population (van Leeuwen etal.,2015).
Onepreviousstudy(Glendinningetal.,2010)used(earlierver-sionsof) thesemeasures, investigatingoutcomesat12‐month fol-low‐up in two cohorts: those in receipt of reablement and thosereceivinghomecare.Findingsfromthisandourstudyalignintermsofhealth‐relatedqualityoflife.Howeverthepreviousstudydidnotfindadifference in social care–relatedqualityof lifebetween thecohorts at 12 months follow‐up, nor were changes in scores be-
tweenbaselineand12‐monthfollow‐upstatisticallysignificant.Twootherstudies(Lewin,DeSanMiguel,etal.,2013;Tuntland,Aaslund,Espehaug,Forland,&Kjeken,2015)–both randomisedcontrolledtrialscomparingreablementwithusualcare–usedalternativemea-sures of quality of life: theCOOP/Wonka and theAssessment ofQualityofLifeScale(AQoL).Neitherreportreablementsignificantlyaffectinghealth‐relatedqualityoflifeatfollow‐uptimepointscom-
paredtousualcare.Bothstudiespositanumberofexplanationsforthese findings, including the same workers providing reablementandusualcareandotherlimitationsinstudydesign.However,thesefindingsdohighlightthatwiderrecoveryprocesses,independentof
reablement,may be driving or contributing to observed improve-
someinteresting issues.WhileourfindingssuggestthatallEQ‐5Ddomains are relevant to evaluating the impact of reablement, thisisnotsoforASCOTSCT4.Justthreeoftheeightdomains (activi-ties/occupation,socialparticipation,senseofcontroloverdailylife)werereportedasproblematicbyatleast40%ofthesampleatentryinto reablement.All are highly salient to theobjectivesof reable-
gree, to the increased levelof social contactexperienced throughthevisitsofreablementworkers.Thiscanbehighlyvaluedbyser-viceusers(Gethin‐Jones,2013;Beresfordetal.,2019).
ablement. It was only possible to administer the Barthel Indexatentry into the serviceanddischarge.Atdischarge, a significantchange in score was observed, representing a small–medium ef-fect.ThisfindingalignswiththoseoftwoprevioustrialsinAustralia
F I G U R E 3 AdultSocialCareOutcomesToolkit(ASCOT)SCT4domains:proportionsreportingneedsmetversusunmetneedsatentry,dischargeand6monthspostdischarge
| 9BERESFORD Et al.
whichusedamodifiedversionof this instrument. In contrast, thedifferenceinmeanscoreontheNEADLscalebetweenT0andT1 was
not statistically significant.However, a significant change inmean
patternofresultssuggestsfurtherandbroadergainsinfunctioningmaybeachievedonceindividualsaredischargedfromreablement.Theabsenceofacomparatorgroupmeanswecannotattributetheseimprovementstoreablementandtheymay,insteadorinpart,bedueto non‐specific recovery processes observed after, for example, afracturehashealed(Tuntlandetal.,2015).However,astudywhichdiduseacomparatorgroupsfounddifferencesbetweengroups in(practitioner‐reported) abilities to carry out extended activities ofdailyliving(favouringthereablementgroup)werenotobserveduntilsomemonthsafterdischarge(Lewin,DeSanMiguel,etal.,2013).
Thesefindingssupportwiderargumentsthat:(a)evaluationsofreablementshouldassessfunctioningwithrespecttocoreandex-tendedactivitiesofdailyliving,and(b)longertermfollow‐upshouldbe included in studydesigns.With regard to the first point, toolswhichmeasurebothcoreandextendedactivitiesofdailylivingarenowbeingdeveloped(Chenetal.,2012;LaPlante,2010).Alsorel-evant here are concerns being expressed about the psychometricpropertiesofsomeexistingmeasures,andtheirusewithpopulationsforwhomtheywerenotoriginallydesigned(deMorton,Keating,&Davidson, 2008; Tennant, Geddes, & Chamberlain, 1996). Thesepointsshould informfuturedecisionsaboutselectionofmeasuresoffunctioning.
Analternativeapproachtotheuseofstandardisedmeasures,andadoptedbyaNorwegianRCTofreablement(Tuntlandetal.,2015),are clinical, goal‐setting interviews to identify and monitor func-tionaloutcomesprioritisedbytheserviceuser.Thisapproachalignswellwith the ethos and objectives of reablement and is commonwithin the field of rehabilitation (Turner‐Stokes, 2009). However,this isonlypossible if serviceshavecapacity to integrate this intotheirroutinepracticeorevaluationsaresufficientlyresourcedtoin-
corporatethis.
TA B L E 4 Directionofchangeinscoresonoutcomemeasures
Nature of change
T0 to T1 T0 to T2 T1 to T2
n % n % n %
EQ‐5D‐5L(T0–T1: n=128;T0–T2: n=61;T1–T2: n=49)
Deterioration 16 12.5 11 18.0 21 42.9
Maintenance 4 3.1 0 0 3 6.1
Improvement 108 84.4 50 82.0 25 51.0
ASCOTSCT‐4(T0–T1: n=128;T0–T2: n=59;T1–T2: n=49)
Deterioration 31 24.2 17 28.8 21 44.7
Maintenance 4 3.1 0 0 3 6.4
Improvement 93 72.7 42 71.2 23 48.9
BarthelIndex(T0–T1: n=63)(notcollectedatT2)
Deterioration 22 22.9 — — — —
Maintenance 11 11.5 — — — —
Improvement 63 65.5 — — — —
NEADLscale(T0–T1: n=128;T0–T2: n=64;T1–T2: n=50)
Deterioration 39 30.5 21 32.8 14 26.9
Maintenance 18 14.1 8 12.5 4 7.7
Improvement 71 55.5 35 54.7 34 65.4
GHQ‐12(T0–T1: n=128;T0–T2: n=62;T1–T2: n=50)
Deterioration 23 18.0 10 16.1 12 24.0
Maintenance 16 12.5 10 13 26.0
Improvement 89 69.5 42 67.7 25 50.0
TA B L E 5 Resourceuse,standardisedtomeanuseperweek
Mentalhealthoutcomes,assessedusingtheGHQ‐12,showedapatternofchangesimilartothatobservedforhealthcare‐andsocial care–related quality of life. A significant change in scorewas observed betweenT0 andT1, representing amedium–largeeffect,withthischangemaintainedatT2.Justonepreviousstudyhasevaluatedimpactsonmentalhealth(Lewin&Vandermeulen,2010). This non‐randomised trial used a measure of morale(PhiladelphiaGeriatricCenterMoraleScale)andreportedsignifi-cantimprovementsforthisoutcomeat3and12monthsfollow‐up.
Whiletheobjectives(andprimaryoutcomes)ofreablementareto restore and/or retain skills which allow individuals to manageeveryday living activities as independently as possible (Aspinal etal.,2016),thesefindingsindicateanimportantsecondaryeffectofreablement. Itmaybethecasethat (re)gains in independenceandre‐engagement with everyday life achieved through reablementdirectly cause gains in mental health through, for example, im-
provedself‐worthandself‐efficacy,andthepleasureandsatisfac-tionderivedfromengaginginmeaningfulactivities.However,othermechanismsmayalsobeatplaybothduringreablementandafterdischarge which support improvements in mental health and the
abilitytoliveas independentlyaspossible.First,existingevidencesuggestsmentalhealthcanimpactanindividual'scapacitytoengagein activities which support mental well‐being (e.g. social or othermeaningfulactivities).Second,itcanaffectcapacity,ormotivation,toproblemsolveandmanagetheactivitiesofdailyliving(Benbow& Bhattacharyya, 2016; Coll‐Planas et al., 2017; Hjelle, Tuntland,Forland,&Alvsvag,2017;Lee,2006;Mlinac&Feng,2016;Storeng,Sund,&Krokstad,2018).Giventhatolderageincreasestheriskofpoormentalhealth,andtheassociationsbetweenmentalhealthandother coreoutcomes,work to furtherunderstand theextent, andhow, reablement affects mental health outcomes appears highlypertinent.
4.2 | Implications of study findings for future economic evaluations
We found the largest contributors to resource use were use ofhealthcare and social care services and intensity of informal caresupport.However,mostpreviousstudieshavelookedonlyatserviceuse.Intermsofcollectingdataonresourceusedirectlyfromstudy
TA B L E 6 Costs,standardisedtomeancostperweek
Sector Cost
At entry to the service At discharge from the service At 6 months follow‐up
participants, includinginformalcaresupport,theSCPQperformedwell in termsofcompletenessofdata.However, it is important tonote that, where data was collected via home visits, participantstypicallychoseittobeadministeredasastructuredinterviewratherthanself‐complete.Furtherworkisthereforerequiredtoassessitssuitabilityifdatacollectionistobeviapostaladministration.
4.3 | Including self‐report measures in reablement evaluation
Itisnowacceptedthat,wherepossible,anyevaluationofaninter-ventionshould includeuser‐reportedoutcomes.Akeychallengeforevaluationsofreablementisthatrecruitmentandbaselinedatacollectionoccursatatimeoffrailtyorfeelingsofvulnerability;anissuenotuncommoninhealthandcareservicesresearch(Gibbons,Black,Fallowfield,Newhouse,&Fitzpatrick,2016).Incorporatingoutcomes data collection (both practitioner‐ and self‐reported)into routine practice may offer a partial solution to minimisingdemandsonstudyparticipantsbyavoidingadditionaldatacollec-tionvisits.However,ourandotherstudies’ findingspoint totheimportanceofcapturingarangeofoutcomedomains.Thismaybebeyondwhatservicesareabletotakeonintermsoftheadditionaltime this requires.Our experiences of using local study staff tocollect self‐reportedoutcomesdata are relevant here.Data col-lectionatdischargeandat6monthsfollow‐upwasconductedviaahomevisitbythesameresearcherwhoconsentedandcollectedbaselinedata.Thisstrategyworkedwellwithaveryhighretentionat T1. Significant differences in retention at 6months follow‐up(91%vs.52%)accordingtowhetherhomevisitsorpostaladminis-trationwasusedfurthersupportsthevalueofthisapproach.
4.4 | Study limitations
Lower than expected recruitmentmeant a core study objective –comparingmodels of service delivery –was not fulfilled. Theob-
dividualslivinginthreelocalitiesinEnglandandreceivingreablementfromtheir local reablementservicealignswithexistingevidenceofthepositiveimpactsofreablement.Italsosuggeststhattofullyevalu-
This project was funded by the National Institute for Health'sHealth Services and Delivery (HS&DR) programme (project num-
ber: 13/01/17) andwill be published in full inHealth Services and
Delivery Research. Further information available at: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/130117/#/. This re-
portpresentsindependentresearchcommissionedbytheNationalInstitute forHealth Research (NIHR). The views and opinions ex-pressed by authors in this publication are those of the authorsanddonotnecessarily reflect thoseof theNHS, theNIHR,MRC,CCF,NETSCC,theHealthServicesandDeliveryprogrammeortheDepartmentofHealth.FionaAspinaliscurrentlysupportedbytheNIHRCollaborationforLeadershipinAppliedHealthResearchandCare(CLAHRC)NorthThames.
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How to cite this article:BeresfordB,MayhewE,DuarteA,etal.Outcomesofreablementandtheirmeasurement:FindingsfromanevaluationofEnglishreablementservices.Health Soc
Care Community. 2019;00:1–13. https://doi.org/10.1111/hsc.12814