Study protocol for screening anddiagnosis of fetal alcohol spectrumdisorders (FASD) among young peoplesentenced to detention in WesternAustralia

Hayley M Passmore,1,2 Roslyn Giglia,1,3 Rochelle E Watkins,1,3

Raewyn C Mutch,1,2,3,4 Rhonda Marriott,5 Carmela Pestell,1,6

Stephen R Zubrick,1,3,7 Candice Rainsford,1 Noni Walker,1 James P Fitzpatrick,1,3

Jacinta Freeman,1 Natalie Kippin,1 Bernadette Safe,1 Carol Bower1,3,8

To cite: Passmore HM,Giglia R, Watkins RE, et al.Study protocol for screeningand diagnosis of fetal alcoholspectrum disorders (FASD)among young peoplesentenced to detention inWestern Australia. BMJ Open2016;6:e012184.doi:10.1136/bmjopen-2016-012184

▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2016-012184).

Received 6 April 2016Accepted 1 June 2016

For numbered affiliations seeend of article.

Correspondence toHayley M Passmore; hayley.passmore@telethonkids.org.au

ABSTRACTIntroduction: Prenatal alcohol exposure can causelifelong disability, including physical, cognitive andbehavioural deficits, known as fetal alcohol spectrumdisorders (FASD). Among individuals with FASD,engagement with justice services is common. Little isknown about the prevalence of FASD among youngpeople engaged with the Australian justice system. Thisstudy aims to establish FASD prevalence amongsentenced young people in detention in WesternAustralia (WA), and use the findings to develop ascreening tool for use among young people enteringdetention. Translation of these results will guide themanagement and support of young people in detentionand will have significant implications on the lives ofyoung people with FASD and the future of Australianyouth justice services.Methods and analysis: Any sentenced youngperson in WA aged 10–17 years 11 months is eligibleto participate. Young people are assessed for FASD bya multidisciplinary team. Standardised assessmenttools refined for the Australian context are used,acknowledging the language and social complexitiesinvolved. Australian diagnostic guidelines for FASD willbe applied. Information is obtained from young people,responsible adults, teachers and custodial officers.Individualised results and management plans for eachyoung person are communicated to the young personand responsible adult. Prevalence of FASD will bereported and multivariate methods used to identifyvariables most predictive of FASD and to optimise thepredictive value of screening.Ethics and dissemination: Approvals have beengranted by the WA Aboriginal Health Ethics Committee,University of WA Human Research Ethics Committee,Department of Corrective Services, and Department forChild Protection and Family Support. Anonymisedfindings will be disseminated through peer-reviewedmanuscripts, presentations and the media. Extensiveconsultation with stakeholders (including governmentagencies, detention centre staff, community service

providers, the young people and their families orcarers) will be ongoing until findings are disseminatedand translated.

INTRODUCTIONPrenatal alcohol exposure (PAE) can resultin lifelong physical and neurocognitiveabnormalities, which can severely impact ona person’s quality of life.1–5 The spectrum ofthese abnormalities is termed fetal alcoholspectrum disorders (FASD). In Australia, thespectrum of FASD encompasses specific diag-noses depending of the severity and type ofimpairments present.6 Diagnosis on theFASD spectrum include fetal alcohol syn-drome (FAS), partial FAS (pFAS) and neuro-developmental disorder-alcohol exposed(ND-AE).6 FAS is defined by evidence ofgrowth deficiency, central nervous system(CNS) impairment in three or moredomains, and the presence of all three spe-cific facial features: short palpebral fissures, asmooth philtrum and a thin vermillion

Strengths and limitations of this study

▪ First study to estimate the prevalence of fetalalcohol spectrum disorder (FASD) among youngpeople in detention in Australia.

▪ Aims to develop a screening tool for the identifi-cation of young people with FASD early in theirinvolvement with the justice system.

▪ Incorporates research translation and is guidedby extensive community consultation.

▪ Conducting research within a detention centreposes challenges and environmental instabilities.

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border of the upper lip. pFAS is defined by two of thesethree facial features and CNS impairment, with con-firmed PAE. ND-AE is defined as CNS impairmentacross three or more domains without facial features,with confirmed PAE.The primary disabilities seen in FASD can vary, but

commonly include deficits in memory, learning, atten-tion, understanding abstract concepts, reasoning, under-standing cause and effect, learning from pastexperiences, information processing, decision-makingand comprehending social skills or expectations.1–3 5 7

These deficits, a result of damage to the brain after PAE,can lead to a number of secondary effects that adverselyimpact an individual’s well-being, productivity and lifepotential. These include school difficulties, unemploy-ment, disrupted education, substance use and/or addic-tion, homelessness, mental health issues, and early andrepeat engagement with the law.1 4 7

A large proportion (60%) of young people with FASDbecome involved with the criminal justice system,1 andthey are 19 times more likely to be detained comparedwith those without FASD.5 Young people with FASDoften display hyperactivity, impulsiveness, aggressivenessand poor judgement,5 8 9 characteristics that can nega-tively impact on their ability to adhere to socially accept-able behaviours, hence becoming risk factors foroffending.10 11 In addition, young people with FASDoften have an inability to understand causal relation-ships or remember that there are consequences fortheir actions. Although young people with FASD oftenbecome involved with the law due to their impulsiveactions or aggressive behaviours, they can also be overlytrusting of others, easily coerced or misled andvictimised.9

In addition to their increased risk of entering deten-tion, young people with FASD have a high risk of exhi-biting antisocial or undesirable behaviours whileincarcerated.9 Justice, law enforcement and correctionalstaff might interpret these behaviours as intentional mis-conduct, rather than recognising that the behaviours area result of neurocognitive impairment, interrupted edu-cation and possible comorbid mental health issues.Young people with FASD also have difficulty complyingwith parole orders that comprise stringent directives (eg,meeting in an unfamiliar place, adhering to a specifiedtime), resulting in breaches of parole conditions and apotential return to incarceration.9 12 It is essential thatFASD is identified as early as possible in a detainedyoung person’s contact with the law in order for theirbehaviours to be interpreted correctly as a manifestationof their impairments, and provide opportunity forappropriate application of the law and evidence-basedmanagement strategies throughout their engagementwith justice services.No prevalence rates for FASD among young people in

Australian detention centres have been established.However, past research leads to the expectation thatmany cases of FASD are undiagnosed or have

unintentionally been misdiagnosed as another dis-order.5 13–15 What has been documented is higher ratesof FASD among Aboriginal people in Australia in com-parison to non-Aboriginal people.16–18 Additionally,Indigenousi young people are 31 times more likely to bein detention compared with non-Indigenous youngpeople across Australia.19 With those considerations inmind, it is anticipated that there will be many youngpeople within detention in Western Australian who areaffected by FASD.In order to reduce the negative impact of crime and

incarceration on society, there is a critical need to deter-mine the extent that young people with FASD areinvolved with the justice system.20 21 Once that determin-ation is made, development of appropriate evidence-based management strategies for these young peoplecan take place. Screening for and diagnosis of FASD canbe challenging for a number of reasons. There are oftenmultiple barriers impeding diagnosis.13 Barriers canconsist of minimal awareness among health professionalsregarding PAE, difficulties in obtaining confirmation ofalcohol use during pregnancy and the stigma often asso-ciated with diagnosis.22 23 Effective screening tools areessential for early identification of impairment.15 24

Unfortunately, there is a lack of screening instrumentsfor FASD that are valid and reliable within an Australiancontext.25 Further complicating the issue is limited cap-acity for screening and diagnosis due to geographical,service funding and training constraints.22 26 27

Ideally, the diagnostic process involves a comprehen-sive assessment of a young person’s health, neurocogni-tion, sensory, motor, speech and social skills carried outby a multidisciplinary diagnostic team.28 Informationshould be obtained from those close to the individualsuch as family members and teachers, and externalsources including school records, family history, medicalrecords, social services information, and in particular,any previous diagnoses of physical or cognitive impair-ment to verify what is reported by the individual.28 It iscrucial that the diagnostic process is tailored to theneeds of the individual, and that the information ascer-tained is communicated back to the individual, theirfamily and other supports as appropriate. By identifyingthe individual’s strengths and difficulties in this way,their social, health and educational outcomes can beconsiderably improved, and the risk of secondary effectsdecreased with the use of appropriate management strat-egies and modification of their physical and socialenvironments.29

With no indications as to how many people in theAustralian justice system are living with FASD, it is impos-sible to ensure the required supports are available for

iThe term Indigenous has been used to refer to Aboriginal and TorresStrait Islander people. The term Aboriginal has been used elsewhereto refer to Aboriginal people only, given the specific involvement ofAboriginal young people in this research.

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those affected. This is likely to result in a large propor-tion of individuals with physical and cognitive im-pairments maintaining their involvement with the lawdue to justice systems not having the skills, resources orsupport services required to break the cycle of recidiv-ism.9 30 Awareness of these issues in Western Australia(WA) is growing, with recent parliamentary enquiries,31–33

community services providers34 and the WA Departmentof Health FASD Model of Care35 calling for programmesto identify and assist young people with FASD while indetention to help them function better when out insociety, and help prevent them from returning todetention.In response, this study was undertaken to determine

the extent that FASD exists among young people indetention in WA, and guide the youth justice system inthe identification, management and support of thoseaffected. The study is funded by a National Health andMedical Research Council (NHMRC) Targeted ResearchGrant for Fetal Alcohol Spectrum Disorders inIndigenous Populations. This protocol paper describesthe consultations that guide the study processes, and themethods and assessment tools selected and pilot-testedprior to beginning the study.

Study aimsThe aims of this research are to:1. Estimate the prevalence of FASD among young

people in detention in WA.2. Develop and evaluate a FASD screening instrument

appropriate for use among young people enteringdetention in Australia.

METHODSWhile this paper outlines the screening and diagnosisprotocols used in the prevalence study, it is important tonote that this is only one component of a much larger

study. This overarching study is multifaceted and incor-porates research translation, empowerment and capacitybuilding to ensure diagnosis is not carried out in isola-tion, and provides opportunity for positive change tooccur in the lives of those affected by FASD. More specif-ically, additional research components (as shown infigure 1) involve building capacity among the detentioncentre workforce, qualitative evaluation of the preva-lence study processes and an analysis of linked dataonce the prevalence study is completed to explore riskfactors for involvement with the justice system.

SettingThe study is being conducted in Banksia Hill DetentionCentre, the only detention centre within the state of WAfor young people who offend. It was built in 1997 and islocated ∼26 km from the Perth city centre. SinceJanuary 2013, the detention centre population has fluc-tuated between 110 and 207 young people, but is cur-rently at 142 young people at the time of publication.The population consists of young people on remand,those awaiting trial or bail determination and those whohave been sentenced to detention. Males and femalesreside in separate residential units within the facility,and ∼75% of the population at present are Aboriginal.36

Ethics and disseminationGiven the characteristics of the population under investi-gation and the seriousness of the potential diagnosticoutcomes, cultural sensitivity is of primary concern.Anonymised results of this study will be widely dissemi-

nated through peer-reviewed manuscripts, conferencepresentations, the media and consultations with relevantstakeholders, government agencies, justice professionalsand community organisations where appropriate. Nopersonally identifiable information will be releasedwithout assent from the participating young person andconsent from their responsible adult.

Figure 1 Design of overarching

study.

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ConsultationPrior to the grant submission, extensive consultation withkey stakeholders was undertaken over several months todetermine if the research would be feasible and accept-able to the Department of Corrective Services (DCS) andthe Indigenous and non-Indigenous communitiesaffected by the research. With initial high-level supportfor the study, consultations were held once the grant wasapproved and prior to the start of a pilot test of assessmentprocesses involving the clinical assessment of 10 youngpeople. A significant amount of time was spent develop-ing networks and working relationships for these multi-layered consultations to occur, such as with staff fromyouth justice services, child protection services, Aboriginalhealth networks, FASD advocates and academic institu-tions. These consultations are ongoing, and are essentialto ensure adequate departmental and community involve-ment in the research and its practical application. Manyof these consultations have been facilitated by the devel-opment of three specific groups created to inform theresearch: a Consumer and Community Reference Group,a Steering Group and a DCS and Department for ChildProtection and Family Support (CPFS) Reference Group.Comprised of foster parents with a child with FASD,

an Indigenous researcher investigating the impact ofFASD in Aboriginal families, and an Indigenous commu-nity worker who has also fostered children with FASD,the Consumer and Community Reference Group is a corner-stone for the study. It was integral to the development ofthe recruitment resources such as the pictorial assentforms, the consent forms and the information providedto participants and their responsible adult. This groupalso provided advice on: (1) culturally appropriate com-munication strategies for engaging staff families and theyoung people, as well as for processes of obtainingconsent; (2) best practice when asking for sensitive infor-mation; (3) the possibility of reimbursements for theyoung people; (4) the dissemination of information and(5) potential challenges. In addition, a community navi-gator who had previously been employed as a youth cus-todial officer at the detention centre was employed priorto the pilot test to provide assistance in developing therecruitment information and in navigating the oper-ational aspects of the detention centre system and DCSprotocols. Other community members and communityorganisations are contacted for comment and guidanceas required, on recommendations from the Consumerand Community Reference Group.Representatives from relevant consumer and advocacy

organisations, the Aboriginal Legal Service, the Officeof the Inspector of Custodial Services, communitymembers and a senior administrative staff member fromthe detention centre comprise the Steering Group. Thegroup meets bi-monthly and provides direction andguidance on the research processes and how best todraw on the research outcomes to positively influencechange in the justice setting, while maintaining the well-being of the young people as their primary interest.

The Reference Group is a high-level directorial groupthat addresses the ongoing challenges of conductingresearch in a custodial setting. Decision makers fromwithin the DCS, CPFS and detention centre meet toensure that research protocols and/or operational pro-cedures can be adjusted to meet the requirements ofthe detention environment while still maintaining therigour of the research methodology. The DeputyCommissioner for Youth Justice Services, DCS seniormanagers from health services and psychology, and stafffrom the detention centre including the superintendent,senior administrators, an Aboriginal welfare officer, asenior representative from CPFS, chief investigators ofthe study and the project manager comprise the mem-bership of this group.All three groups have been integral in the develop-

ment of the protocols, and they continue to provideguidance across many other aspects of the study. Sincebeginning the pilot test, several changes have takenplace following consultations with those most appropri-ate for each particular issue. For example, consultationswith the Reference Group have resulted in the detentioncentre providing a physical space more suitable for clin-ical assessments than was initially used, and the supervi-sion procedures of detention centre staff were altered toensure staff time is used most effectively by reducingadditional staff allocations while still maintaining appro-priate levels of supervision during assessments.Aside from these groups, information about the study

processes has and will continue to be widely communi-cated as appropriate. Formal presentations have beenheld for all departments at the detention centre includ-ing case management, psychology, administration, edu-cation, youth custodial officers and youth justice officers,as well as for a number of community organisationsdeemed relevant to the study outcomes. Opportunisticmeetings, discussions and ‘yarning’ continue to providevaluable input into shaping the research processes.Informal conversations with parents and guardians ofthe young people, community workers and detentioncentre staff occur as opportunities arise. The ‘elevatorpitch’ has quickly become the ‘carpark conversation’ asmany exchanges occur in passing, either inside thedetention centre or outside in the detention centrecarpark.While considerable time and resources have been

spent on these formal and informal consultations, theycontinue to provide invaluable insight and collaborativeopportunities that shape not only the scope and pro-cesses of the study, but also its impact on the lives ofyoung people affected by FASD.

ParticipantsAll Aboriginal and non-Aboriginal young people whoare sentenced to a period of detention within the centreand are aged 10–17 years 11 months are eligible toparticipate.

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RecruitmentParticipants are recruited by a direct (face-to-face)approach made initially by a research officer based atthe detention centre, with support from custodial offi-cers responsible for supervision of the young people,detention centre teaching staff, case managers andother support staff. If a young person expresses interestin being involved in the study, then the research officerwill explain the purpose of the study using pictorialassent forms and participant information sheets whichthe young person can retain.Young people who are serving a sentence of detention

and have consequently been deprived of certain civil lib-erties have a vulnerable status with respect to theirability to consent for research. In this study, a youngperson is the first to provide written assent to participatein the study. With their assent, a study information sheetis then given to the identified responsible adult fromwhom written consent is obtained. Consent for youngpeople in the care of CPFS is sought directly from theCPFS case manager responsible for that young person.Once permission from CPFS has been granted, parents ofa young person in the care of CPFS will be contacted bythe research officer for consent as a courtesy and informa-tion sharing opportunity. In some cases, CPFS may deter-mine that it is not appropriate for the research officer tocontact the parents of some children in their care, and noattempt will be made to contact these parents. The attain-ment of assent and consent will set into motion the datacollection processes of the research study.

Data collection processesThe research officer is responsible for the collection ofinformation using standardised forms from the partici-pant, the responsible adult, detention centre teachers,youth custodial officers and child protection caseworkers. They are also responsible for taking photos ofthe young person’s face and entering them into Astley’sFAS Facial Photographic Analysis software package (FASFacial Photographic Analysis Software [program]. 2.0version. Seattle, WA: University of Washington, 2012.), aprogram designed to effectively measure and rank theextent that the facial features specific to FAS and pFASare present. Table 1 outlines all information collectedand methods of collection used.The research officer schedules the clinical assessments

for the participants. Assessments for each individual areconducted within a period of 2 weeks depending on theoperational requirements of the detention centre, avail-ability of custodial officers who must accompany theyoung person to the assessment, clinician availability andthe requests of the young person themselves. If neces-sary, any of the assessments can be offered in severalsmaller sessions if the young person is unable to com-plete them in one sitting. Most assessments are sched-uled in the mornings to reduce chances of fatigue inthe afternoon.

Diagnostic criteriaIn order to make a correct diagnosis of FASD, the multi-disciplinary team must conduct a full assessment of theyoung person’s facial features, growth and CNS function.In addition, a diagnosis also requires information onPAE. The Australian guidelines for the diagnosis ofFASD recommended by Watkins et al6 are used in thisstudy to assign specific diagnoses on the spectrum ofFASD based on the comprehensive diagnostic assess-ment by the study clinicians and information collected.Table 2 outlines the recommended Australian categoriesand criteria for diagnosis.

Diagnostic assessmentThe diagnostic assessment is conducted by a team com-prised of a paediatrician, neuropsychologist, speechpathologist and occupational therapist. Table 3 outlinesall of the formal and informal assessments used.The paediatrician completes a comprehensive health

assessment, developed following a literature review andconsultation with national and international colleaguesexperienced in the care of children and young peoplewith FASD and within justice services. The paediatricianconducts an interview with the young person, derivingtheir early life, educational history and age of onset forhealth risk behaviours. In addition, the young personparticipates by drawing their family tree, and in thisactivity discloses their lived history of nurture andtrauma. Clinical history of current and past health issuesis obtained using standardised health history question-naires46 47 including a Western Australian-derived struc-tured interview for cross-cultural paediatric healthcare.45

Clinical examination assesses the young person’s moodand wellness; social strengths; expressive abilities;growth; visual acuity and hearing; fine and gross motorfunction; dysmorphic features; neurocutaneous stigmata;and cardiovascular, respiratory and neurological func-tion. Evidence of previous injuries and any other abnor-mal physical findings are documented in a body map,including poorly healed fractures, lacerations, tattoosand piercings. Measures of growth (head circumference,weight and height), palpebral fissure lengths, lip phil-trum shape and upper lip volume are recorded, andadditional features associated with PAE are systematicallynoted, including hair whorl, clinodactyly and shape ofpalmar creases.The assessment conducted by the neuropsychologist was

developed following a comprehensive literature review,and in consultation with experienced clinical neuropsy-chologists familiar with conducting assessments withincommunity and youth justice settings. The formal neuro-psychology assessment battery was chosen to adequatelycover the domains used to determine whether there isfunctional CNS dysfunction (ie, 2 SD below the mean)in three or more domains. As per Australian diagnosticcriteria,6 63 the domains assessed are intellectual func-tioning/cognition, attention/activity levels/sensory,executive functions, memory, social skills/adaptive

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functioning/social communication and academic func-tioning. The domains of language and motor ability aremore thoroughly assessed by the speech pathologist andoccupational therapist on the team. Additional consid-erations for the neuropsychology tests (and question-naires) chosen included their psychometric properties(reliability and validity), administration time, clinicalutility (including use of engaging culturally appropriatematerials) and whether Australian norms were available.A non-verbal test of intelligence was also chosen forthose without standard Australian English, and a LifeSkills Checklist was developed for Aboriginal children asa more culturally appropriate method of assessing adap-tive functioning. No changes were made to the neuro-psychology assessment battery following the pilot test.Speech, language and communication are assessed by

a speech pathologist. Development of the assessmentbattery included a comprehensive literature review andliaison with clinicians and research academics in thefields of FASD, youth justice, language learning impair-ments and language assessment of people who speakAustralian Aboriginal English and Australian Aboriginal

languages. Standardised assessments were chosen fortheir reliability and validity in measuring receptive andexpressive oral language, and phonological awareness ofyoung people in the target group age range.53 55 Orallanguage and phonological awareness are included inthe Canadian guidelines for FASD diagnosis,28 and stan-dardised assessments have been used widely in examin-ing oral language profiles of children with FASD andyoung offenders.64–67

It is recognised that standardised norm referencedassessments are based on monolingual standardAustralian English language acquisition. For childrenwho are learning standard Australian English as asecond dialect or language, it is possible that their lan-guage differences may be misinterpreted for languagedisorder, causing bias and invalid results.68–70 Also, achild’s health, social background, schooling consistency,culture and parent/caregiver literacy levels are just someexamples of factors possibly affecting progression to acompetent level of standard Australian English.71

Therefore, informal tasks have been developed to assistin examining the language abilities of the young people

Table 1 Data collected and method of collection

Person contacted Assessment/survey Method of collection

Participant Assent form Collected in person by research officer

Facial photos Taken by research officer and entered into photo analysis

software program (FAS Facial Photographic Analysis

Software [program]. 2.0 version. Seattle, WA: University of

Washington, 2012)

Biomedical and psychosocial checklist Collected in person by research officer

Responsible adult Consent Collected either in person by the research officer, in person

by a youth justice officer for families in regional and remote

towns, or via post, via email or via fax after communication

with the research officer has occurred in person or via

telephone

Background history survey (includes

AUDIT-C37 questions for prenatal alcohol

use)

By research officer either in person or via telephone

CBCL Parent’s Report Form38

Vineland Adaptive Behaviour Scales

Second Edition—parent/caregiver rated

form39

(BRIEF-P)40

Teacher Vineland Adaptive Behaviour Scales,

Second Edition—teacher rated form41*

Distributed in person by research officer, self-completed by

teachers and returned to research officer in person

BRIEF-T40*

CBCL Teacher’s Report Form38*

Youth custodial

officer

Informant Brief Screener (adapted from

Conry and Asante)42Distributed in person by research officer, self-completed by

youth custodial officer and returned to research officer in

personLife Skills Checklist (adapted)43†

Informal social skills and social

communication questionnaire

Child protection

case worker

Background history survey as above* Retrieved from case notes of young people in care of CPFS

by case worker and given to research officer

*Only if responsible adult not available to complete.†Only if identified as Aboriginal or Torres Strait Islander.BRIEF-P, Behaviour Rating Inventory of Executive Function—Parent; BRIEF-T, Behaviour Rating Inventory of Executive Function—Teacher;CBCL, Child Behaviour Checklist; CPFS, Child Protection and Family Support.

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who speak Australian Aboriginal English or anAboriginal language as their first or ‘best’ language.These tasks were trialled and revised during the pilottest, and are administered by the speech pathologistwith an interpreter from the Aboriginal KimberleyInterpreting Service. In addition, informal assessmentsand checklists were developed to examine motorspeech, connected discourse (narrative), and social com-munication and social skills. These areas of speech, lan-guage and communication are included in theCanadian guidelines28 and were used by Salter72 in aFASD prevalence study in WA’s Fitzroy Valley.73 It wasplanned that higher level language would be measuredusing the Clinical Evaluation of LanguageFundamentals, Fifth Edition, Metalinguistic;74 however,due to time constraints, this was removed after the pilottest.The assessment of motor skills and sensory processing

is conducted by the occupational therapist. The develop-ment of the assessment process was underpinned by aninvestigation into the current Australian and inter-national literature and in consultation with other thera-pists working in the FASD research field. The QuickNeurological Screening Test—Third Edition60 is used toreview any underlying soft neurological signs such as

visual tracking, motor planning, coordination andbalance. The Movement Assessment Battery forChildren—Second Edition (Movement ABC-2) waschosen to assess fine and gross motor coordination as itis quick assessment to administer and score, with strongvalidity and reliability.59 However, use of the MovementABC-2 is limited in that normative scores are only avail-able for those aged between 3 and 16 years. Alternativeassessments that cover a greater range of ages were con-sidered for use but deemed too lengthy for the studyschedule, and it was decided that the Movement ABC-2would be maintained as a limitation when used in thestudy with young people over 16 years old. The BeeryVisual Motor Integration assessment and subtests (VisualPerception and Motor Coordination) were chosen dueto their high reliability and validity,58 and findings ofpast research which shows a correlation between visualmotor integration skills and a FASD diagnosis.75 TheSensory Profile—Adolescent/Adult self-questionnairewas used, as it is the only tool that covers the requiredage range, and has been used widely in other researchinvestigating sensory processing difficulties contributingto attention and activity levels.61 An informal hand-writing sample was also completed to review any existinghandwriting difficulties. All motor and sensory

Table 2 Watkins et al6 recommendations for Australian FASD diagnostic categories and criteria

Diagnostic category

Diagnostic

criteria* FAS pFAS ND-AE

Requirements for

diagnosis

Requires all 4 of the following criteria

to be met:

Requires confirmed PAE, the presence

of 2 of the 3 characteristic FAS facial

anomalies at any age, and CNS criteria

to be met:

Requires confirmed

PAE and CNS

criteria to be met:

Confirmed or unknown Confirmed Confirmed

Facial anomalies Presence of all 3 of the following facial

anomalies at any age:

1. Short palpebral fissure length (2 or

more SDs below the mean)

2. Smooth philtrum (rank 4 or 5 on the

UW Lip-Philtrum Guide44)

3. Thin upper lip (rank 4 or 5 on the

UW Lip-Philtrum Guide44)

Presence of any 2 of the following facial

anomalies† at any age:

1. Short palpebral fissure length (2 or

more SDs below the mean)

2. Smooth philtrum (rank 4 or 5 on the

UW Lip-Philtrum Guide44)

3. Thin upper lip (rank 4 or 5 on the UW

Lip-Philtrum Guide44)

No anomalies

required‡

Growth deficit Prenatal or postnatal growth deficit

indicated by birth length or weight

≤10th centile adjusted for gestational

age, or postnatal height or weight

≤10th centile

No deficit required‡ No deficit required‡

CNS abnormality At least 1 of the following:

1. Clinically significant structural abnormality (eg, occipital–frontal circumference ≤3rd centile, abnormal

brain structure), or neurological abnormality (seizure disorder or hard neurological signs); and/or

2. Severe dysfunction (impairment in 3 or more domains of function, 2 or more SDs below the mean)§

*Appropriate reference charts should be used, and other causes of growth deficit and CNS abnormality excluded.†Based on the presence of two of the three characteristic FAS facial features, the observed impairments cannot be causally linked to PAE.‡Not required for diagnosis but may be present.§Assessment of dysfunction based on evidence from standard validated assessments instruments interpreted by qualified professionals.CNS, central nervous system; FAS, fetal alcohol syndrome; FASD, fetal alcohol spectrum disorder; ND-AE, neurodevelopmentaldisorder-alcohol exposed; PAE, prenatal alcohol exposure; pFAS, partial FAS; UW, University of Washington.

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processing assessments were trialled during the pilottest, and deemed to be the most appropriate tools forthis study. No changes were made following the pilottest; however, a supporting resource was developed toaid the young people when completing the SensoryProfile questionnaire.

Data collationOnce all clinical assessments are complete and all avail-able questionnaire information has been collected foran individual, the multidisciplinary team meets to reviewthe results and make a diagnosis if appropriate, takinginto account co-occurring morbidities such as attention-deficit/hyperactivity disorder or intellectual disability.Together, the team prepares an ‘Assessment Results andRecommendations Report’ in a format appropriate for

the participant and their responsible adult, building onthe young person’s strengths and providing individua-lised management recommendations. For example, spe-cific communication styles and behaviour managementstrategies to best support the young person while indetention and on release will be outlined. The report isthe property of the participant and their responsibleadult, but with their permission it can be released todetention centre staff, medical and mental health pro-fessionals, youth justice services and other agencies asnecessary.On completion of the report, a member of the multi-

disciplinary team meets with the young person and theirresponsible adult individually, to communicate theassessment results and recommendations in a mannermost appropriate for their level of comprehension. This

Table 3 Diagnostic assessments used by multidisciplinary diagnostic team

Clinician Assessment

Paediatrician Medical assessment (including measurement of palpebral fissure length, lip philtrum and upper lip

volume using UW Lip-Philtrum Guides 1 and 244) and structured interview considering early life,

educational opportunity, lived trauma and additional risk factors for neurocognitive impairment including

high-risk behaviours such as early onset and frequent substance, high impact head injury or

post-traumatic stress disorder45–47

Neuropsychologist WASI-II48

WNV49* including spatial span

Delis-Kaplan Executive Function System50 colour-word interference, trail making and category fluency

WRAML-II Screening Memory Index51

WRAT-4 for reading comprehension, word reading, sentence comprehension, spelling and math

computation52

Speech pathologist Speakers of standard Australian English and

Australian Aboriginal English:

Speakers of an Aboriginal language:

CELF-4 Australian53† Informal non-word repetition task measuring

phonological memory and phonological awareness

(adapted from Gould54)

Comprehensive Test of Phonological Processing—

Second Edition55Informal story recall task

Informal receptive grammar task

Informal narrative task (oral and written),

measuring sequencing and grammar in connected

discourse (based on Snow and Powell56)

Informal vocabulary and word classes task

Picture description barrier game task measuring

sentence-level vocabulary and prepositions,

self-monitoring and response to prompting

Informal narrative task (oral and written) with

inferencing and predicting tasks

CELF-4 Screener57 to gauge standard Australian

English competence

Informal oromotor, articulation, phonology and motor speech assessments

Occupational

therapist

Beery Visual Motor Integration including Motor Coordination and Visual Perception subtests58

Movement ABC-259

Quick Neurological Screening Test—Third Edition60

Informal handwriting screen

Sensory Profile—Adolescent/Adult self-questionnaire61

Vineland Adaptive Behaviour Scales39 41 for review of motor and daily living skills domain

*WNV administered instead of the WASI if participant cannot speak fluent Australian English.†For speakers of Australian Aboriginal English responses were coded in standard Australian English, and with aspects of AustralianAboriginal English grammar based on literature including Pearce and Williams.62

CELF-4 Australian, Clinical Evaluation of Language Fundamentals, Fourth Edition, Australian Standardised Edition; CELF-4 Screener, ClinicalEvaluation of Language Fundamentals, Fourth Edition, Screening Test Australian & New Zealand Language Adapted Edition; MovementABC-2, Movement Assessment Battery for Children—Second Edition; UW, University of Washington; WASI-II, Wechsler Abbreviated Scale ofIntelligence—Second Edition; WNV, Wechsler Non-Verbal Test of Intelligence; WRAML-II, Wide Range Achievement in Memory & Learning—Second Edition; WRAT-4, Wide Range Achievement Test—Fourth Edition.

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provides an opportunity for the participants and theirresponsible adults to ask questions or raise concernsregarding the assessment process and outcomes.Support is offered during these feedback sessions in theform of a trusted adult present on request of the youngperson, or a translator for those with standard AustralianEnglish as their second language. Contact details areprovided should the responsible adult want additionalinformation or support, and young people are remindedof the support available at the detention centre, includ-ing health and psychology services.

Screening instrumentA key component of the study is the development andevaluation of a screening instrument that can be used toscreen all young people entering detention to identifyrisk factors for FASD. The screening instrument will bedeveloped after completion of the data collection, basedon potential screening risk factors and the diagnosis ofFASD in the study sample.

Statistical considerationsSample size estimation was based on the midpoint esti-mate of the proportion of young people from custodialcorrectional populations with FASD (15%) in a recentsystematic review.5 Assuming a CI width of 10%, and anα of 0.05, the number of participants required to estab-lish that the screening test is at least 80% (90±10%) sen-sitive is 230. The study is powered on the number ofparticipants required to ensure acceptable precision ofthe sensitivity estimate as fewer participants are requiredto establish precise estimates of specificity.76

Multivariate methods including multiple logisticregression modelling will be used to identify the screen-ing indicators most predictive of a diagnosis of FASDand which optimise the predictive value of screening.Receiver operating characteristics curve analysis will beused to facilitate selection of optimal screening cut-pointsto examine trade-offs in sensitivity versus specificity andbalance the costs of over-referral and underascertainmentin screening instrument development.

DISCUSSIONThis study is the culmination of over three decades ofresearch work in the area of FASD.6 16 77–81 It will be thefirst to determine prevalence rates of FASD among youngpeople in an Australian juvenile detention centre. Resultsof this research will be used to develop appropriate inter-ventions and support for young people diagnosed withFASD within the justice system. It is likely, based on previ-ous research,1 5 13 82 83 that many of the adversities exhib-ited by young people within detention may be attributedto FASD and that a lack of diagnosis in the Australiancontext has led to suboptimal targeting of behaviouralinterventions within the justice system. This research willprovide an opportunity to build on the clinical practicemodels for improving treatment effectiveness24 by

providing diagnoses or other clinical findings alongside atailored report that includes individual recommendationsfor the benefit of each young person.Conducting research within a juvenile detention

centre poses challenges with environmental limitationsor instabilities expected to arise as the study progresses.These challenges could involve the space availablewithin the detention centre for the assessments to takeplace, the availability of officers to escort the youngpeople to the assessments and access to the youngpeople if they have been involved in an incident or donot feel like participating on a particular day. Owing tosuch challenges, flexibility in study design will remain anecessity, without compromising the integrity of theresearch. Since moving from the pilot test to the defini-tive study, research processes have been modifiedaccording to operational requirements of the detentioncentre and the various complexities existing within parti-cipants’ lives. Such alterations include (1) the adaptionof the speech, language and communication assessmentbattery to accommodate for time constraints; (2) chan-ging the physical areas of the detention centre used forassessments; (3) altering reporting guidelines in thecase of being privy to information or an incident thatrequires reporting under detention centre policy and(4) changing the process of providing feedback to theyoung people and their responsible adults. While chal-lenges are unavoidable due to the complex nature ofthe detention centre environment, ongoing consultationwith stakeholders provides opportunity to find solutionsthat appropriately balance operational procedures withresearch integrity and study quality.Widespread consultations have also led to the multifa-

ceted design of the overarching study, which will havemajor implications on the significance of the researchand its translation. While the prevalence study encom-passes diagnosis within a small population of high-riskyoung people, findings will be translated into a validatedscreening tool that can be used to identify young peopleliving with an undiagnosed FASD early in their contactwith the justice system. The ability to screen youngpeople and refer them for clinical FASD assessmentenables a pathway of management to be determined forthe young person, their families and their carers,35

including corrective services. However, it is the work-force development and qualitative evaluation compo-nents that will play a crucial role in the translation of theresearch, and facilitate change within the Australianyouth justice system.The workforce development component will occur

simultaneously with the prevalence study. It involves theimplementation and evaluation of an interventionaiming to increase knowledge and awareness of FASDamong custodial staff, and build their capacity tomanage young people suspected to have FASD andother cognitive impairments using equitable and cultur-ally appropriate management strategies. The interven-tion will be developed in consultation with custodial staff

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members and using preliminary results from the preva-lence study, to ensure that it is relevant to the staff andyoung people at the detention centre. Building the cap-acity of the detention centre workforce by empoweringthem with the skills to recognise and manage the beha-viours of young people with neurodevelopmental disor-ders such as FASD will be a primary outcome of thisplanned work and a turning point for detention centresacross Australia. Similar professional development andworkforce education has been carried out with otherprofessionals in the Western Australian justice sector,including the recent production of videos aiming toeducate lawyers and magistrates about the relevance ofFASD in their arenas of work.84

The qualitative evaluation will involve techniques suitedto the complex identification and management of FASDwithin the justice context85 and aims to evaluate theimpact of this research on the lives of the young people,their families and their wider communities, including thegovernment agencies and community service providersengaging with the young people. This component willexplore the successes and failures of the study, and isessential to understand if the screening and diagnosisand workforce development interventions facilitate cul-tural change across the youth justice system. The recog-nition that this research will not only affect theindividual participants but the wider social context inwhich they live has been imperative throughout thestudy development and community consultations, andthe qualitative evaluation component enables this to befurther explored.Together, the components of this research, including

the linked data analysis, will crucially broaden the under-standing of FASD and the youth justice system inAustralia, while taking a humanitarian approach toresearch and research translation. Given that youngpeople with FASD are at great risk of obtaining andmaintaining involvement with the justice system, it iscrucial that research in this area is translated into mean-ingful and enduring outcomes, ultimately improving thelives of young people with FASD who are engaged withthe justice system Australia wide.

Author affiliations1Telethon Kids Institute, The University of Western Australia, Perth, WesternAustralia, Australia2School of Paediatrics and Child Health, The University of Western Australia,Perth, Western Australia, Australia3National Health and Medical Research Council Centre of Research Excellence“Reducing the Effects of Antenatal Alcohol on Child Health”, Perth, WesternAustralia, Australia4Department of Health Western Australia, Child and Adolescent HealthService, Perth, Australia5School of Psychology and Exercise Science, Murdoch University, Perth,Western Australia, Australia6School of Psychology, The University of Western Australia, Perth, WesternAustralia, Australia7Faculty of Education, The University of Western Australia, Perth, WesternAustralia, Australia8Centre for Child Health Research, The University of Western Australia, Perth,Western Australia, Australia

Acknowledgements The authors thank all of the young people at BanksiaHill Detention Centre involved in the study and their families for theirparticipation and support. They also thank all members of the Consumerand Community Reference Group, the Steering Group and the ReferenceGroup for their invaluable and continuing input to the study. They thankthe Department of Corrective Services and the Department for ChildProtection and Family Support for their ongoing support, and acknowledgeall of their staff members involved with the study including all staff basedat Banksia Hill Detention Centre. The authors acknowledge ProfessorJonathan Carapetis, for his ongoing input and support as an associateinvestigator on the study. They also thank individuals who have contributedto the study: Scott Avery, Peter Collins, Steven Dhu, Aaron Dick, DamianGriffis, Heather Jones, Glenn Pearson, Neil Reynolds, Vicki Russell, JulieWaud and Robyn Williams. This work was supported by the NHMRCReducing the Effects of Antenatal Alcohol on Child Health Centre ofResearch Excellence (#1110341).

Contributors CB, REW, RCM and RM are chief investigators on the study,and JPF, CP and SRZ are associate investigators. HMP is a PhD student withThe University of Western Australia. HMP and RG wrote the first draft of themanuscript, and HMP was responsible for compiling the final draft. RG wasthe researcher responsible for overseeing the manuscript and theimplementation of the pilot test. REW was the primary researcher responsiblefor the concept development, research design and grant application. RCM is apaediatrician and researcher and was integral to the development of theconcept, clinical assessment battery and study processes. RCM and CP,along with NK and BS, comprise the clinical team for the study who wereeach responsible for developing the assessment battery relevant to theirfield, and drafting parts of the manuscript relating to the clinicalassessments. RM is a researcher specialising in Aboriginal health andwell-being, and was involved in the grant application and conceptdevelopment. JPF is a paediatrician and researcher who provided input intothe concept development and clinical assessment battery. SRZ is a chiefinvestigator in the Australian Research Council Centre of Excellence forChildren and Families over the Lifecourse (CE140100027) and providedinput into the concept development and grant application. CR was theproject officer for the research at the time of pilot implementation andintegral to operationalising the research design, project databases andgaining ethical approval. NW is the project manager and is responsible formanaging the governance and community consultations relevant to theresearch, developing study protocols and gaining ethical approval. JPF, asthe research officer based at the detention centre, is responsible forconsumer and community consultations, recruitment processes andcoordination of clinical assessments. CB is the senior researcherresponsible for overseeing the grant application and research design, andcontinues to oversee the reliability and protocols of the study. All authorsread, edited and approved the final manuscript.

Funding This research is funded by the National Health and Medical ResearchCouncil (grant number APP1072072). CB was funded by a National Healthand Medical Research Council Research Fellowship (#634341). HMP isfunded by an Australian Postgraduate Award Scholarship and The Universityof Western Australia Safety Net Top-up Scholarship (reference number21806348).

Competing interests None declared.

Ethics approval Ethics approval has been granted by the Western AustralianAboriginal Health Ethics Committee (approval number 582) and University ofWestern Australia Human Research Ethics Committee (approval number RA/4/1/7116). Research approvals were also gained from the Department ofCorrective Services (project ID 335) and the Department for Child Protectionand Family Support (approval number 2015/8981).

Provenance and peer review Not commissioned; externally peer reviewed.

Open Access This is an Open Access article distributed in accordance withthe Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license,which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, providedthe original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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