Internet based aftercare program for patients with bulimia nervosa in Mexico: A pilot study / Programa de seguimiento en línea para pacientes con trastornos de la conducta alimentaria en México: Estudio piloto

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http://journals.iztacala.unam.mx/index.php/amta/

CASE

REPORT

Internet-based

aftercare

program

for

patients

with

bulimia

nervosa

in

Mexico

---

A

pilot

study

Claudia

Unikel

a,∗

_,

_Marisol

_Sánchez

b

_,

_Eva

_Trujillo

c

_,

_Stephanie

_Bauer

d

_,

_Markus

_Moessner

d

a_Dirección_de_{Investigaciones}_{Epidemiológicas}_y_{Psicosociales,}_Instituto_Nacional_de_Psiquiatría_Ramón_de_la_Fuente_Mu˜_niz,_Mexico b_Early_Stage_Researcher_de_la_red_INTACT_{(Individually}_Tailored_Stepped_Care_for_Women_with_Eating_Disorders)_ﬁnanciado_por_la

ComisiónEuropeainiciativaMarieCurie,Mexico

c_Centro_para_el_Tratamiento_de_los_Trastornos_de_la_Conducta_Alimentaria,_Comenzar_de_Nuevo_A.C.,_Mexico d_Center_for_{Psychotherapy}_Research,_University_of_Heidelberg,_Germany

Received4March2015;accepted12May2015

Availableonline18June2015

KEYWORDS

Eatingdisorders; Aftercare; Internetbased; ACTUA; Mexico

Abstract Highratesofrelapsesarecommonineatingdisorderpatientsafterachievingthe sta-tusofremission.Thelackofsupportaftercompletingatreatmentcancontributetorelapse. Therefore aftercareprogramsareneededtomaintain thebenefits oftreatment,toreduce theriskofrelapse,andtostabilizepatients’well-being. Thispaperdescribesthe Internet-basedaftercareprogramACTUA(ContinuedSupportforEatingDisorders)developedtosupport patientswithbulimianervosainMexico.ACTUAisanadaptationoftheprogramEDINA (Internet-based maintenance treatment for eating disorders) which was developed andevaluated in Hungary.In thispaperwe firstdescribetheinterventionwhichconsistsofdifferentmodules includingamonitoringandfeedbacktool,forums,andcounselingchatwithaclinician.Inthe secondpart,wereportonfirstexperiencesfollowingtheintroductionoftheprogramintwo treatmentcentersinMexico(MonterreyandMexicoCity).Fifteenpatients participatedina semi-structuredinterviewassessingperceivedbenefitsofparticipatinginACTUAaswellas bar-riersthatpreventedpatientsfromjoiningtheprogram.Implicationsfortheimplementationof Internet-basedinterventionsinMexicoarediscussed.

PALABRASCLAVE

Trastornosdela conducta alimentaria;

Programadeseguimientoenlíneaparapacientescontrastornosdelaconducta alimentariaenMéxico---Estudiopiloto

Resumen Laselevadas tasasderecaídasoncomunesenlospacientescontrastornos dela conductaalimentariaunavezqueseleshadadodealtadeuntratamiento.Lafaltadeapoyo

∗_{Corresponding}_author.

E-mailaddress:unikels@imp.edu.mx(C.Unikel).

PeerReviewundertheresponsibilityofUniversidadNacionalAutónomadeMéxico. http://dx.doi.org/10.1016/j.rmta.2015.05.004

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Seguimientode pacientes;

Programaenlínea; ACTUA;

México

despuésdeterminadoeltratamientopuedecontribuiralasrecaídas.Porlotanto,los progra-masdeseguimientosonnecesariosparamantenerlosbeneﬁciosobtenidoseneltratamiento, para reducirelriesgode recaídasypara estabilizarelbienestar delospacientes.Este tra-bajo describeelprogramade seguimientoenlíneaACTUA (ApoyoContinuopara Trastornos Alimentarios),desarrolladoparadarapoyoapacientesconbulimianerviosaenMéxico.ACTUA esunaadaptacióndelprogramaEDINA(Programadeseguimientoenlíneaparatrastornos ali-mentarios),quefuedesarrolladoyevaluadoenHungría.Enestetrabajosedescribeprimero laintervención,queconsisteendiferentesmódulos,incluyendounaherramientade monitor-izaciónyretroalimentación,foroyunchatconunclínicoparaobtenersupervisión.Enlasegunda partesereportanlasprimerasexperienciasdespuésdelaintroduccióndelprogramaen2 cen-trosdetratamientoenMéxico(MonterreyyCiudaddeMéxico).Quincepacientesparticiparon enunaentrevistasemi-estructurada,queevaluólapercepcióndelosbeneﬁciosobtenidosde participarenACTUA,asícomolasbarrerasqueimpidieronquelospacientesparticiparanenel programa.SediscutenlasimplicacionesquetieneenMéxicolaimplementacióndeunprograma enlínea.

Introduction

Bulimianervosa(BN)isasevereandinmanycasesachronic mentalillness whichis associatedwithsubstantial impair-ment on the psychological, physical, interpersonal, and sociallevels(APA,2000).Accordingtothenationalsurveyof psychiatricepidemiologyinMexico,inthepopulationover 18years,0.6%ofmalesand1.8%offemalessufferfromBN (Medina-Moraetal.,2003).However,theprevalenceof par-tialsyndromesissubstantiallyhigher(Hoek&vanHoeken, 2003).

AccordingtotheNationalInstituteforClinicalExcellence (2004)CognitiveBehavior Therapy(CBT)isconsidered the treatment of choice for BN. Despite the efﬁcacy of CBT, relapse is frequent in eating disorder patients (Keel & Mitchell, 1997; Olmsted,Kaplan,& Rockert,1994). Frank etal.(1991)deﬁnedrelapseas‘‘areturnofsymptoms sat-isfyingthefullsyndromecriteriaforanepisodethatoccurs duringtheperiodofremission,butbeforerecovery’’.Keel and Mitchell’s (1997) review showed that approximately 50% of the women initially diagnosed with BN recovered fromtheir disorder, but30% of thewomen experienced a relapse.

Attheendoftreatment,eatingdisorderpatientsare con-frontedwiththestressesofeverydaylifeagain.Ithasbeen reportedthattheriskforrelapseisparticularlyhighwithin theﬁrst6---7monthsafterdischargefromhospital(Richard, Bauer,&Kordy,2005).Takingintoaccountthehighratesof relapse,offeringan aftercaresupportin thiscriticaltime should help tostabilize the patient’s well-beingand thus reducerelapses.

Psychosocial interventions based on Information and Communication Technology (ICT) became more common overthe pasttenyears.Theypromisemany beneﬁtssuch as (1) to extend services for economically disadvantaged populations and individuals living in rural areas, (2) to improve self-management competences, (3) to provide support at relatively little cost. ICT-based interventions have demonstrated their potential for anxiety disorders (Anderson, Jacobs, & Rothbaum, 2004), post-traumatic

stress disorder (PTSD), smoking cessation, body image, drinking,weightloss,depressionandanxiety(Barak,Hen, Boniel-Nissim,&Shapira,2008).

Sofar,fourreviewarticleshavebeenpublishedontheuse ofICTinthepreventionandtreatmentofeatingdisorders (ED)(Aardoom,Dingemans,Spinhoven,&Furth,2013;Bauer &Moessner,2013;Dölemeyer,Tietjen,Kersting,&Wagner, 2013;Loucasetal.,2014).Inthefieldofaftercarepromising findingsontheefficacyof 3interventionshavebeen pub-lishedsofar(Bauer,Okon,Meermann,&Kordy,2012;Fichter etal.,2012;Gulecetal.,2014).

Asinmostothercountries,theuseofInternetandnew technologieshasincreasedinMexicooverthelastyears.The MexicanAssociationof Internet(AMIPCI,2007)carriedout severalinvestigationsfrom2003to2007.Themain objec-tivewastoevaluatethehabitsofInternetusersinMéxico. AMIPCI reported an increase of Internet users of 12.75% (9millions)during theseyears. The users’main activities ontheInternetweresendingorreadingemailsandchatting withotherpeople.

MentalhealthresourcesinLatinAmericaareveryscarce. InMexico an epidemiologicalstudy reporteda prevalence of28.6% for mental disorders(Medina-Moraet al.,2003). Despite this high burden of illness, resources are mostly devotedtochroniccases,sothatoutpatienttreatmentand aftercare services are massively under-ﬁnanced (Alarcón, 2003). In the light of this lack of aftercare interventions despitethehigh riskofrelapse,we developedand imple-mentedanonlineaftercareprogramtosupportpatientswho ﬁnishedinpatienttreatment.

The present paper has two aims: (1) to introduce the online aftercare program ACTUA (Continued Support for EatingDisorders) and (2) to explore factors that patients considerrelevantforparticipation(i.e.perceivedbeneﬁts andbarriers).

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Methods

The present pilot study was conducted by collaborators at the Center for Psychotherapy Research in Heidelberg (Germany) and at two clinical institutionsin Mexico: the centrefor eatingdisordersComenzarDeNuevoA.C. (Mon-terrey) and the National Institute of Psychiatry Ramón de la Fuente Mu˜niz (Mexico City). During their inpatient treatment in these institutions, patients were invited to participate in ACTUA once they got discharged from the clinic. Those who agreed, signed the informed consent formandchosea pseudonymastheir usernamein ACTUA and a password received an introduction into the pro-grambefore theirdischarge from theclinic. Participation in ACTUA was offered for 4 months following discharge. Patientshad receivedamultidisciplinary inpatientor out-patienttreatmentwithmedical,psychiatric,nutritionaland psychological approaches, of diverse length in relation to theillnesscharacteristics.Thepsychotherapeuticapproach includedCBTandindividualorfamilytherapywhenneeded.

Intervention

ACTUAstandsfor ‘‘tomakeanaction’’andisan Internet-based aftercare program that allows providing support topatientsafter theyterminate face-to-face professional treatmentinatreatmentcenter.ACTUAisanadaptationof theprogramEDINA(Internet-basedmaintenancetreatment for eating disorders) which wasdeveloped and evaluated inHungary.Themainobjectiveistomaintainthebeneﬁts achievedduringinpatienttreatmentandtopreventrelapse. TheInternet-basedprogramincludesvariouscomponents of varying intensity: (1) psychoeducation, (2) supportive monitoringandfeedback,(3)forum,(4)groupchatsessions, (5)individualchatsessions,and(6)referraltoface-to-face treatment.

Themoduleonpsychoeducationprovidescomprehensive information related to eating disorders. In addition to a generalsection that includes basic facts, risk factorsand treatment options for eating disorders, the processes of recoveryandrelapsearedescribedindetailtosupport par-ticipantsinmanaging thetransitionfromacutetreatment toaftercare supportsuccessfully.The online forumoffers peer-to-peersupport.Participantscanintroducethemselves tootherparticipantsandtheycanexpressor discusstheir opinionsonvarious topics.The contentof thepostings is continuouslycheckedbya memberoftheACTUA teamto promote positive communication among participants and deleteinsulting and potentially harmfulcontent if neces-sary.

The supportive monitoring and feedback system is the centralmoduleofACTUA.Everyweek,participantsreceive an email as a reminder to ﬁll in their weekly monitor-ingassessment.Participantscanaccesstheassessmentvia a link in the email or directly via the ACTUA webpage. Themonitoringquestionnairecontainsquestionsrelatedto participants’ wellbeing and eating behaviors in the past week.Thethreemonitoringdomainsare:frequencyofbinge eating,frequencyofcompensatorybehavior,andbody dis-satisfaction.Aftercompletingthequestionnaire,basedon their answers, participants receive a feedback message,

which refer tothe individualsymptom status and course. Weekbyweek aparticipantcanchangeineach domainin fourdifferentways:improve(fromthedysfunctionalrange tothe functionalrange),deteriorate(fromthe functional to the dysfunctional range), stay in the functional range or stay in the dysfunctional range. Therefore, there are 4×4×4possiblecombinationsofhowapatientstatecan changefromweektoweek.Theevaluationisbasedonthe SMS-basedaftercareprogramintroducedbyBauer,Percevic, Okon,Meermann,andKordy(2003).Thefeedbackincludes reinforcingstatementsincaseofpositivechanges.Incase ofdeteriorationstheysuggeststrategiestocounteractsuch deteriorationsandremindtheparticipantsofhealthy behav-iors they learned during treatment. In addition to the questionsassessingthemonitoringdomains,theShort Eval-uationof EatingDisorders (SEED,Bauer,Winn,Schmidt,& Kordy,2005)isusedintheweeklymonitoringquestionnaires toassessED symptomsandidentifysevereimpairment.In case of severe impairment, a clinician is informed auto-maticallyviaemailandthen thepatientiscontacted (see below).

Theweekly groupchat guided byaclinicianallowsfor both,interactionwithatherapistandcommunicationamong participants. The 90-minutesessionsprovide the opportu-nity todiscuss diverse topics with the clinician and with other participants. Participation in the weekly sessions is mandatoryandparticipantsareremindedofthesessionsvia email.

Theindividualchatisbasedonvoluntaryparticipation. Participantscanreserveanappointmenttodiscuss individ-ualproblems theywouldliketosharewithaclinicianina one-to-onesetting. Inaddition,cliniciansencouragethose patientswhoreportedsevereimpairmentinthemonitoring toutilizesuchindividualchatcounselingtoclarifytheneed ofmoreintenseintervention.Ifaparticipant’sstatus con-tinuestodeteriorate,theclinicianreferstheparticipantto aface-to-facetreatmentfacility.Referraltoaface-to-face treatmentfacilityisacrucialcomponentoftheprogramas participationinACTUA isnotconsideredasufﬁcient inter-vention for patients witha fullblown ED. As most of the componentsareautomatized,theprogramrequiresonly lit-tleresourcesandcanbeofferedatnocostforpatients.In additiontotheprovisionofgroupandone-to-onechats,a clinicianhastotakecareofparticipantsdevelopingsevere symptoms.

Sample

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(n=4).The interventionwas carriedout by onetherapist specialized in the treatment of eating disorders at the ComenzardeNuevoA.C.clinic.

Thesemi-structuredinterviewincludedquestions regard-ingtheutilityofparticipatingintheprogram,iftheprogram satisfiedtheirneeds,ifitwasusefulforproblemsolving,the useandusefulnessofthedifferentcomponentsofthe pro-gram,theiropinionintheprogramduration,difficultiesand benefits.

Procedure

Participantswereinvitedbythetherapistincharge ofthe interventiontoparticipateatthesemi-structuredinterview. Forthosewhoaccepted,anappointmentwasestablishedat theComenzardeNuevoA.C.clinic tocarryoutthe inter-viewinaface-to-face manner.Theinterviewer tooknotes oftheresponsesgivenbytheparticipants,whichwereused afterwardstowriteareportonthebeneﬁtsandbarriersof theACTUAprogram,inordertoamelioratetheintervention andtheusabilityoftheprogram.

Results

Firstexperiences

ACTUAwasimplementedintheclinicalcenterinJuly2010. About 20 patients hadused the aftercare programat the timethepilotstudywascarriedout.Asmostof the com-ponentsareautomatized,the programrequiresonly little resources and can be offered at no cost for patients. In additiontotheprovisionofgroupandone-to-onechats,a clinicianhastotakecareofparticipantsdevelopingsevere symptoms.Beinganewinterventionofferedtopatients,it wasimportanttoevaluateitsfeasibilityandacceptanceby patients,thisbeingthemainreasonwhyweconductedthis pilotstudy.

Semi-structuredinterviews

Inordertogetaﬁrstimpressionabouttheacceptanceofthe programandabout thefactorsthatpreventpatientsfrom participating in the program, ﬁfteen patients were inter-viewed.

From the interview responses we could conclude that theintervention waswell acceptedby patients andcould be easily implemented into the clinical routines of inpa-tient and outpatienttreatment, although certain aspects havetobetakenintoaccount,suchasinternetaccess,good understandingofthewebpageperformance,andproviding accessibleschedulesforindividualandgroupsessions.

The results of the interviews indicated that the use ofthedifferentcomponentsof theprogramgivesbeneﬁts totheparticipants.Theindividualsstillparticipating(N=6) reportedthat the componentswereuser-friendly and the instructionsfromtheprogrameasytounderstand,butthree outof these sixreportedtechnical difﬁcultieswith open-ing the chats and loading the monitoring questionnaires. Regardingthe chats(groupandindividual) thesix partici-pantsfeltthecontentveryhelpfulastheycouldtalkabout

their experience withother patients and receive support fromtheclinician.Forinstance,theytalkedaboutthe trig-gers of their illness and setting the homework between sessions. Three people reported that they wanted more differentoptionstobookappointmentswiththeclinician. Theindividualswhoquitin anearlystage(N=5) reported thefactorsorreasonsthatinfluencedquittingthe registra-tionof the program: the burden of answering, the study related questionnaires and concerns about data security wereimportantfactors.Onepersonreportedthatthe feed-backsreceivedafteransweringthemonitoringassessments weretoorepetitiveandnotsopersonal.Also,two individ-ualsfeltthat thegroup chatswere notso well organized and found it difficult to interact with other participants. However,threeindividualswhoquitearlyreportedto con-sidertheuseoftheInternetasatoolinthefutureandtwo individualsconsidereditasacomplementwithother treat-ment.The individualswhowerenot willingtoparticipate (N=4) feltit wasnot so personal; they disliked the idea ofonlinecommunication,andwouldpreferhumancontact. Twoindividuals alsofeltitdifficult totalkabout their ill-nesswithpeopletheydidnot know.Regarding theonline programitself,onepersonreporteditwasnotsoattractive anddidnotlookprofessionalenough.

As part of the interviews participants werealso asked aboutwaystoimprovetheprogram.Twoindividualsstill par-ticipatingsaiditwouldmaketheprogrammoreattractiveby addingvideos,photosandmorepeopleinthegroupchats. Onepersonwhoquitearlysaidthatshewouldliketohave moreﬂexible hours for the chats. One person mentioned thatshewouldnotwanttocompletelongquestionnaires.

Discussion

Thispilotstudyhadtheaimofintroducingtheonline after-careprogram ACTUA and toexplore beneﬁts andbarriers thatpatientsconsiderrelevantforparticipationinan after-careeatingdisordersprogram.

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high numberof patients, as partsof the intervention are automatedanddonotrequiremoderation.

ACTUA couldbe easilyimplemented intothe organiza-tionalstructureoftheparticipatinghospitals.Theaftercare program is offering a new option to support ED patients during the critical transition period after the termina-tion of inpatient treatment. For those with access to theInternet, theprogram providesanonymous supportat low cost. The program does not follow a strict protocol. Participantshavetheﬂexibilitytousesomeofthe compo-nentsofACTUA (i.e., psycho-education,forum,individual chat)accordingtotheirneedsandindividualpreferences. In this sense, the program offers individualized after-care, aiming at concordance withparticipants’ individual needs.

The central module of ACTUA is the continuous mon-itoring of the relevant ED symptoms. In addition to the positiveeffectsofself-monitoringfollowingtreatment ter-mination(Bauer etal., 2012) the monitoring allowsearly identification of patients’ relapses and thus provides an opportunityfortimelyreaction.Thisidentificationis auto-mated; a clinician is informed by the system as soon as a participant’s impairment exceeds a predefined thresh-old. In that case, the clinician can refer the participant tomoreintense face-to-face treatment. The objectiveof ACTUA is twofold: The primary objective is relapse pre-vention, but in case of recurrence of severe symptoms andrelapse,organizingamoreintenseformofsupportas soon as possible becomes the objective for this specific patient.

Conclusions

This is the ﬁrst study investigating the feasibility of an onlineinterventionfor EDin Mexico.Although thesample sizeissmallandtheevidenceispredominantlyanecdotal, the interviews providedimportant insights, which willbe ofcriticalvalueforthefutureimplementationofICT-based psychosocialinterventionsinMexico.

The present study is a pilot study with a small sam-ple size. It does not provide any evidence that goes beyond feasibility and acceptance of the program. In order to be able to draw conclusions about its efﬁ-cacy, an adequately powered randomized control trial is needed.

Some important considerations have to be taken into accountforthereleaseofanICT-basedinterventionforthe treatmentofeatingdisordersinMexico.Mexicooccupiesthe 72ndplaceamongalistof190countriesaroundtheworldin theaccesstotheInternet,whichmeansmanypeopleinthe countryarenotyetconnectedtotheInternetonaregular basis,andthereisstillprobablynogreatacceptanceofa nonfacetofacetreatment of mentalillnesses; neverthe-less,thereisgreatlack oflow costspecializedtreatment options,and as thescientiﬁc evidencereveals, ICT-based programscanbealow-costeffectivetoolforthetreatment ofeatingdisorderpatients,whicharetwopowerfulreasons thatjustifythereleaseoftheACTUAprogramtothe scien-tiﬁccommunityinordertoincludeawiderrangeofpatients, reducetreatmentcostsandavoidrelapsesofeatingdisorder patientsafterdischarge.

Responsibilities

ethics

Protection of human and animal subjects.The authors declare that theprocedures followed werein accordance with the regulations of the responsible Clinical Research EthicsCommitteeandinaccordancewiththoseoftheWorld MedicalAssociationandtheHelsinkiDeclaration.

Conﬁdentialityofdata.Theauthorsdeclarethattheyhave followed the protocolsof their work center onthe publi-cation of patient data and that all the patients included inthestudyhavereceivedsufﬁcientinformationandhave giventheirinformedconsentinwritingtoparticipateinthat study.

Righttoprivacyandinformedconsent.Theauthorsmust haveobtainedtheinformedconsentofthepatientsand/or subjectsmentionedinthearticle.Theauthorfor correspon-dencemustbeinpossessionofthisdocument.

Conﬂict

of

interest

Theauthorsdeclarenoconﬂictofinterest.

Acknowledgements

ThisworkwassupportedbytheResearchTrainingNetwork INTACT, funded by the European Commissionin the Marie CurieProgram(MRTNCT-2006-035988).

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