Schizophrenia and other psychotic illnesses mostcommonly first emerge in late adolescence/earlyadulthood [1]. These illnesses often bear high costsfor the affected individual as well as for their familyand the wider community [2] and the development ofpreventative strategies towards psychosis has been along-standing and desirable goal [3Ð5].

Mrazek and Haggerty [6] wrote Ôthe best hope nowfor the prevention of schizophrenia lies with indi-cated preventative interventions targeted at individu-als manifesting precursor signs and symptoms whohave not yet met full criteria for diagnosis. The iden-tification of individuals at this early stage coupled

with the introduction of pharmacological andpsychological interventions, may prevent the devel-opment of the full-blown disorderÕ (p. 154). Thus,providing appropriate preventative interventions toindividuals describing signs of emerging disorder,such as attenuated or low grade psychotic symptoms,or a strong family history of psychotic disorder, inconjunction with a marked decrease in functioningmay prevent further deterioration [7,8].

For indicated prevention of psychosis to be achiev-able, three important factors are noted. First, criteriathat accurately identify individuals with a high rate oftransition to psychosis must be developed. Second,individuals meeting those criteria must be recruitedby the service providing the preventative interven-tions. Finally, and obviously, the preventative inter-ventions that are developed must be effective inpreventing psychosis in the short and long-term.

The first of these components has been the focus ofprevious research by our group. Forty-one percent ofyoung people meeting specific criteria developed apsychotic illness within 12 months of initial referral

Ordinary article OA 613 EN

Preventative mental health care: accessing the target population

Lisa Phillips, Alison R. Yung, Narelle Hearn, Colleen McFarlane, Mats Hallgren, Patrick D. McGorry

Objective: Preventative approaches to mental illness are becoming a focus of clin-ical and research settings. To date, however, few clinical programs have been estab-lished with this primary aim. This descriptive paper summarises patterns of referralto one service providing clinical care for young people known to be at high risk ofdeveloping a psychotic illness.Methods and results: A 20-month survey of referrals to the service revealed thatmost patients had a prolonged and circuitous route to assessment. Additionally, alengthy time period elapsed between the onset of symptoms and initiation of helpseeking.Conclusions: Information arising from this survey may influence the developmentof strategies to improve access to this service and others aimed at the prevention ofpsychosis. Further, this information may affect the development of generalised pre-ventative mental health services for young people.Key words: pathways to care, prevention, psychosis, service delivery.

Australian and New Zealand Journal of Psychiatry 1999; 33:912–917

Lisa Phillips, Coordinator and Psychologist (Correspondence); AlisonR. Yung, Consultant Psychiatrist; Narelle Hearn, CommunityDevelopment Officer; Colleen McFarlane, Research Assistant; MatsHallgren, Research Assistant; Patrick D. McGorry, Director

PACE Clinic, MH-SKY/University of Melbourne, Locked Bag 10, Parkville, Victoria 3052, Australia. Email: l.phillips@medicine.unimelb.edu.au

Received 22 December 1998; revised 21 April 1999; accepted 26 May1999.

913L. PHILLIPS, A.R. YUNG, N. HEARN, C. MCFARLANE, M. HALLGREN, P.D. MCGORRY

[11]. It was concluded, therefore, that these criteriaidentify young people at greatly increased risk ofdeveloping a psychotic disorder than the general popu-lation. Another study is currently in progress assessinginterventions developed specifically for this high-riskpopulation. The current descriptive paper examines theÔpathway to careÕ of young people meeting the Ôhigh-riskÕ criteria who are referred to a clinical service cater-ing specifically for this target group.

Access to care: first-episode psychosis

Numerous studies have reported that delays in treat-ment of first-episode psychosis extend, on average,from one to 2 years [12Ð14]. Duration of untreatedpsychosis may be attributed to delayed initiation ofhelp-seeking, the lack of recognition of problematicsymptoms by either client, family or healthcareworkers consulted, or the failure of primary careproviders to refer to appropriate services [15]. Thus, acircuitous route is often taken to find appropriate treat-ment for the first-episode population. An average of 3or 4.5 service contact have been made by first episodepatients prior to appropriate treatment being com-menced according to two studies [16,17]

Implications for the high risk group

The Ôpathway to careÕ of high-risk patients might besimilar to that described for first-episode patients, pro-tracted and often involving many steps. The subtle andinfrequent nature of psychotic symptoms as experi-enced by the high risk group, in conjunction with thegeneral reluctance of young people to seek health careis likely to hinder help seeking by young people athigh risk of developing a psychotic disorder.

Young people describing signs of potentiallyemerging psychosis but not full-blown disordermight also sometimes be overlooked by mentalhealth services. The current survey was based inVictoria, Australia, where people describing attenu-ated psychotic symptoms would not normally be eli-gible for treatment within mainstream psychiatricservices, particularly adult services, despite movesby many services towards preventative and earlyintervention foci. Mainstream psychiatric servicesare largely structured to treat those diagnosed with aÔserious mental illnessÕ according to DSM or ICDcriteria [18]. Young people reporting low-grade psy-chotic symptoms may receive treatment by a primaryhealth practitioner or within the private healthsystem, but this has not been assessed.

This paper describes the pattern of referral to amental health clinic targeting young people at highrisk of psychosis over 20 months of operation.Implications for the structure of the service andstrategies for attracting young people at high risk ofpsychosis to treatment are discussed.

Setting

The PACE (Personal Assessment and CrisisEvaluation) Clinic is a specialised clinical/researchservice for young people thought to be at high risk ofdeveloping a psychotic episode. The program wasestablished in Melbourne, Australia in 1994.Research at PACE addresses the issue of identifyingpredictors of psychosis in young people [9], as wellas the development of appropriate preventative inter-ventions. PACE is affiliated with the Early PsychosisPrevention and Intervention Centre (EPPIC), a clini-cal/research service targeting young people experi-encing a first psychotic episode [10].

Method

From March 1995 to October 1996, young peoplewho were referred to PACE and met inclusion cri-teria were invited to become involved in the associ-ated research program. The inclusion criteria for theClinic have been described previously [9] and aresummarised in Table 1. In addition to meeting cri-teria for one or more of the intake groups, researchparticipants must be aged between 14 and 30 years,and have not experienced a previous psychoticepisode.

The 45 young people who met intake criteria andare included in this survey are participants in a largerstudy aimed at identifying markers of increased riskof psychosis. As described above 41% of a group ofyoung people meeting PACE intake criteria becamepsychotic within a 12-month period from recruitment[11]. This transition rate confirms that this group istruly at high risk of first onset psychosis within ashort follow-up period.

All referrals to PACE were initially triaged over thetelephone. If the referral was thought to be appropri-ate, a more formal assessment was conducted withthe young person and family. As a routine componentof the triaging and assessment process, potentialclients, their family members and the referrer wereasked to indicate previous contacts made with healthand allied services prior to referral to PACE. Thatinformation forms the basis of this report.

914 PATHWAYS TO PREVENTATIVE MENTAL HEALTH CARE

Results

Over the 20-month recruitment period, PACEreceived 162 referrals. Sixty-one percent of referralswere male and the average age at referral was18.80 years (SD = 3.39).

As shown in Table 2, the majority of young peoplereferred to PACE were not formally assessed eitherbecause they did not meet intake criteria at the triag-ing point in the referral process (22.8%) or did notattend their appointment (26.5%). A search of thepsychiatric services data base has revealed that twopeople referred to PACE who did not attend theirassessment and four who were assessed and met at-risk criteria but who refused further contact becamepsychotic at some later stage over the next threeyears. Of the 96 assessment interviews conducted, 58young people (35.8% of the 162 referred) met inclu-sion criteria for PACE. Forty-five people who metcriteria agreed to be included in the research project,

27.8% of total referrals to PACE and 73.8% of thosemeeting intake criteria.

Referral sources

The source of all direct referrals received by PACEin the recruitment period are displayed in Fig. 1. Themajor referral source was the Early PsychosisAssessment and Crisis Team (EPACT), a specialisedearly psychosis assessment team (the name of thisteam has recently changed to Youth Access Team).Referrals were received from generic and mentalhealth services, school and university counsellorsand youth housing and employment workers. Thesource of referrals received by EPACT, subsequentlypassed on to PACE, is shown in Figure 2.

The Ôappropriateness of referralsÕ was examined insome detail (Fig. 1). General practitioner referralsmost often met intake criteria followed by referralsfrom EPACT and adolescent health and welfare

Table 1. Intake criteria for the PACE Clinic

Group 1: Group 2: Group 3:Attenuated/low grade psychotic symptoms Transient psychotic symptoms Trait and state risk factors

Ideas of reference, magical thinking, perceptual Ideas of reference, magical thinking, First-degree relative with adisturbance, paranoid ideation, odd thinking and perceptual disturbance, paranoid psychotic disorder or clientspeech, not at intensity or duration of acute ideation, odd thinking and speech; has schizotypal personalitypsychosis; disorderSymptoms deviate significantly from normal; Duration of episode of less than 1 week;

Significant decrease in mentalSymptoms occur several times per week; Symptoms resolve spontaneously; state or functioning,

maintained for at least 1 month;Change in mental state has been present for The change in mental state occurred in The decrease in functioningat least 1 week in the past year and for not the past year. occurred within the past year.more than 5 years.

Table 2. Outcome for those assessed at PACE (March 1995ÐOctober 1996)

Reason Number Percentage of total referrals

Appropriate and agreed to research 45 27.8Failed to attend assessment 43 26.5Not offered assessment because failed to meet criteria 23 14.2Psychotic at assessment 18 11.1Failed to meet screening criteria (age, symptom presentation, etc.) 14 8.6Appropriate but refused research involvement 12 8.0Previous psychotic episode or neuroleptic treatment 6 3.7

915L. PHILLIPS, A.R. YUNG, N. HEARN, C. MCFARLANE, M. HALLGREN, P.D. MCGORRY

services. The percentage of appropriate referralsreceived from schools and colleges was about 3.1%.

More information is known about the Ôpathway tocareÕ of the 45 people who met criteria and took partin further research at PACE. The mean number ofcontacts made with health or allied services of thiscohort prior to contact with PACE was 2.36(SD = 1.32; range = 1Ð7). This indicates that prior tocontacting PACE each person had spoken to approxi-mately two other service providers (general practi-tioner, private psychiatrist or school counsellor forexample) about the symptoms they were experienc-ing. The patterns of contacts are shown in Fig. 3.This information does not indicate whether serviceswere accessed concurrently, if the search for helpwas temporarily ceased at any stage, or the treatmentreceived at each step. It does indicate that potentialclients tended to access general health services orother professional services early in their pathway toPACE and later accessed mental health services.

Time between onset of symptoms and initiationof help seeking

The 45 people who agreed to take part in furtherresearch associated with the PACE Clinic were askedhow long they had been experiencing their symp-toms. The average time between symptom onset andinitiation of help seeking was 85.8 weeks(SD = 132.71). Additionally, the average length oftime between making first contact in the pathway andsubsequent referral to PACE was 41.4 weeks(SD = 91.4). Therefore, the average time from onsetof symptoms to contact with PACE is approximately2.5 years (127 weeks).

Discussion

This paper has examined the pathway to care ofyoung people referred to the PACE Clinic over a 20-month period. The referral pathway for 45 youngpeople who took part in other research projects wasassessed in more detail.

As anticipated, a lengthy delay was found betweenonset of symptoms and the initiation of help seekingby the high-risk cohort. The young people recruitedby the PACE Clinic had been experiencing somechange in mental state for over 18 months, onaverage, before seeking treatment. Reasons for thisdelay were not assessed but may include: mild symptoms, ego-syntonic nature of symptoms, non-referral from other services, a lack of knowledge

Figure 1. Source of referrals to PACE, March 1995to October 1996: nn, did not meet other criteria atassessment; , did not attend appointment; , metcriteria, refused research; n , agreed to research.

Figure 2. Source of referrals to PACE via EPACT,March 1995 to October 1996.

Figure 3. Steps in pathway to PACE for 45 subjectsin ongoing research (first four contacts shown): nn,first contact (n = 45); , second contact (n = 33);, third contact (n = 19); n, fourth contact (n = 6).

916 PATHWAYS TO PREVENTATIVE MENTAL HEALTH CARE

about PACE, a general reluctance of young people toseek help from mental health services, misinterpreta-tion of symptoms (viewed as a phase of adoles-cence), self-medication with substances or fear ofstigmatisation or labelling. This has potential impli-cations for illness outcome: early treatment in thecourse of psychotic illnesses may prevent the emer-gence of further symptoms [19]. Education of youngpeople and their families about mental health and theneed for early treatment may reduce this delay, withobvious benefits for long-term outcome.

As well as a delay in the initiation of help-seeking,almost a year passed from initial contact with healthservices to contact with the PACE Clinic. Theaverage length of the prodrome has been reportedbetween 52 and 104 weeks [17]. In this study, anaverage of 130 weeks passed between the onset ofsymptoms and contact with the PACE Clinic. PACEclients, therefore, present for treatment relatively latein the development of disorder, for some at least at ahighly incipient stage [20]. Over this time, the highrisk cohort had made contact with, on average, twoother services-similar to the first-episode cohortsstudied [16,17]. Help-seeking began with approachesto general health or counselling services: contact wasmade with mental health services sometime later.

The majority of referrals received by PACE overthe 20-month period under observation werereceived from EPACT, a specialised assessment teamidentifying young people experiencing a first psy-chotic episode, or generic mental health services. Thehigh number of referrals from EPACT is not surpris-ing given the bias of this assessment team towardsidentifying first episode psychosis. In addition,PACE has been affiliated with EPACT throughout itsdevelopment. The large proportion of referrals fromother mental health teams suggests that it is useful fora service targeting a high-risk group to maintainclose links with other mental health assessmentteams, certainly not a novel suggestion. A centralisedor combined triaging system might decrease thenumber of contacts made by clients in their search fortreatment, as well as reducing the potential traumaassociated with contacting mental health services anddelays in receiving appropriate treatment.

Only 70% of those offered an assessment at PACEactually attended the session. It is unknown why theremaining 30% did not attend, an obvious limitation tothis discussion. At least two of these people subse-quently developed a psychotic illness and may havemet intake criteria if assessed. A flexible approach toassessment including an outreach capacity and

conducting joint assessments with referral serviceswould potentially decrease the proportion of non-attendees, some of whom may also be at high risk oftransition. Young people who were assessed at PACEbut did not meet criteria were often referred elsewherefor treatment, another step in their own pathway totreatment and further delay before appropriate treat-ment. A generic youth mental health assessmentsystem that directs clients to the most appropriate clin-ical service would facilitate the pathway to psychiatriccare, potentially reducing the frustration experiencedby clients and families when accessing mental healthservices. Two recent papers outline a model for such aservice [21,22], suggesting that it might be appropriatefor psychotic disorders as well as a wide range of psy-chiatric disorders affecting young people.

Community development and education about PACEhas been an integral component of the service. Thisinvolves speaking with workers who are in contactwith young people about PACE and possible indicatorsof emerging psychosis. The number of appropriatedirect referrals, those that have not been referred toEPACT, initially indicates that these activities havebeen somewhat successful. Many referrals have beenrequired to yield the actual PACE group, however,which has economic implications for the clinic in timespent assessing inappropriate referrals. Continued edu-cation, and links with, allied services are required toensure appropriate referrals are obviously required.

The need for continued community liaison and pro-motion of PACE to potential referrers is alsoreflected in the average of two contacts made bypatients prior to being referred to PACE. This islower than the number of contacts made by a firstepisode population prior to receiving appropriatetreatment [17] and suggests that young people whocontact PACE are a subgroup of the entire prepsych-otic population. They might be more open to helpseeking than other people in the prepsychotic phase.

The high-risk cohort tended to access non-mentalhealth professionals relatively early in their pathwayto care and later sought assistance from psychiatricservices. This replicates the pattern observed in a firstepisode psychosis [23]. Education about emergingpsychotic processes targeting non-mental health ser-vices providers aimed at youth may reduce the extrasteps taken to access care. The extended length of timebetween symptom onset and initiation of help-seekingsuggests that population based education programsaddressing mental health issues is required.

The examination of referral patterns to the PACEClinic indicates the need for certain strategies to

917L. PHILLIPS, A.R. YUNG, N. HEARN, C. MCFARLANE, M. HALLGREN, P.D. MCGORRY

enhance the number of direct referrals received andto reduce the amount of time between onset of symp-toms and referral. These are: (i) further communitydevelopment activities aimed at health professionalsand allied services; (ii) separate education programstargeting young people and carers about servicesavailable to those experiencing symptoms indicativeof high risk for a range of potenitally serious mentaldisorders (not just psychosis) and about mentalhealth in general; and (iii) the establishment of ageneric, integrated youth assessment service.

The experience at the PACE Clinic indicates that itis possible to provide a clinical service for youngpeople at risk of developing a psychotic illness. Sincethis has not been possible anywhere until recently, itis obvious that there is a degree of difficulty in access-ing this population. Further, only a small proportionof those young people who are experiencing the pro-dromal phase of a psychotic illness (true positives)actually come into contact with the PACE Clinic.Further community education and a flexible approachto accessing young people who fulfil the intake cri-teria, should ensure that more appropriate referrals arereceived. Thus, it might be possible to establishmental health services with a preventative frame-work, potentially in partnership with primary carersand focusing on the onset phase of other potentiallyserious mental health problems, such as depressive oranxiety disorders which also tend to emerge for thefirst time in the 12Ð26 years age range [6,22].

Acknowledgements

This work has been conducted with the support ofthe Victorian Health Promotion Foundation, Janssen-Cilag, RADGAC, Department of Human ServicesVictoria, North-west Healthcare Network, the Centrefor Young PeopleÕs Mental Health and the Centre forAdolescent Health.

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