Schizo phre nia is one of socie ty s most ex pen sive medi -

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1 Clinical Practice Early Intervention for Psychosis: The Calgary Early Psychosis Treatment and Prevention Program Jean Addington, PhD Associate Professor, Department of Psychiatry and Adjunct Associate Professor, Department of Clinical Psychology, University of Calgary; Manager, Early Psychosis Program, Foothills Hospital, Calgary, Alberta. Donald Addington, MBBS Chair and Professor, Department of Psychiatry, University of Calgary, Calgary, Alberta. The Early Psychosis Treat ment and Pre ven tion Pro gram (EPP) began in December 1996 and was de signed to meet the needs of young people who are initially di ag - nosed with a first episode of psy cho sis. The goals of the program are early identification of the psychotic illness, re - duc tion in the de lays in ini tial treat ment, treat ment of the pri mary symptoms of psy cho sis, re duc tion of sec on dary mor bid ity, reduction of the fre quency and severity of re - lapse, promotion of nor mal psy cho so cial de vel op ment and reduction of the burden for fami lies and care giv ers. We of - fer five areas of treatment: case man age ment, psy chi at ric man age ment and medication strate gies, cognitivebehaviour ther apy, group ther apy and family interventions. This paper describes all aspects of our pro gram, the unique focus of which is the in di vid ual ex pe ri enc ing his or her first epi sode of psychosis. Introduction Schizo phre nia is one of socie ty s most ex pen sive medi - cal con di tions and one of the most se vere psy chi at ric dis or ders. The an nual in ci dence rate of new cases is one in , and the life time preva lence is one in 100. Since on set typi cally oc curs in young adults, dis abil ity can last for a life time which not only causes much suf fer ing for af fected in di vidu als and their fami lies but also places an enor mous bur den on health care serv ices. Cur rent treat - ments, such as medi ca tion, psycho edu ca tion, fam ily sup - port and as ser tive case man age ment can im prove the course of schizo phre nia but can not cure this illness. Intervention précoce : le Programme de Calgary de prévention et de traitement de la psychose précoce Le Programme de prévention et de traitement de la psychose précoce, lancé en décembre 1996, est conçu pour répondre aux besoins des jeunes gens aux prises avec un premier épisode psychotique. Les objectifs du programme consistent à détecter de façon précoce la maladie psychotique, réduire le délai d instauration du traitement initial, atténuer les symptômes psychotiques primaires, réduire la morbidité secondaire, diminuer la fréquence et la gravité de la rechute, favoriser le développement psychosocial normal et alléger le fardeau de la maladie auprès des membres de la famille et des dispensateurs de soins. Le programme offre cinq axes de traitement : la prise en charge clinique, la prise en charge psychiatrique et la pharmacothérapie, la thérapie cognitivo-comportementale, la psychothérapie en groupe et des interventions de nature familiale. Le présent article décrit les aspects de ce programme distinctif, axé sur la personne traversant un premier épisode de psychose. It has been suggested that the pro cesses that make schizo - phre nia a long- term dis or der may be most ap par ent and cause the most dam age in the first few years of the ill ness (1). Ac cord ing to McGlashan, ex ist ing treat ments are es - sen tially pal lia tive and most likely have to be pro vided in - defi nitely oth er wise clini cal de te rio ra tion will oc cur (2, p 3). Current treat ments were de vel oped for ex ist ing cases of schizo phre nia. Treat ments of a pre ven tive nature are not yet avail able, and the treat ments now be ing used have never been tested for their pre ven tive po ten tial (2). Fur - ther, re cent studies of first- episode psy cho sis sug gest that the av er age time be tween on set of psy chotic symp toms and the first ef fec tive treat ment (that is, the du ra tion of un treated psy cho sis), is one to two years but can of ten be much longer (3 6). Many pa tients in the early stage of schizo phre nia are seen by fam ily prac ti tio ners or mental health prac ti tio ners and are not di ag nosed as hav ing schizo phre nia (4,7). It is pos si ble that a lack of skills in rec og niz ing early psy chotic symp toms may be some what re spon si ble for de layed de tec tion and treat ment. CPA Bulletin de l APC Fall 2001 automne 11

2 < Fig ure 1. Age at re fer ral. De lay in re ceiv ing ade quate treat ment is a serious health risk. In di vidu als with ac tive psy cho sis are at risk of inap - pro pri ate and un pre dict able be hav iours, of abusing sub - stances, of self- harm or even sui cide. It has also been sug gested that the ac tive psy chotic state may be neuro - bio logi cally toxic and thus may in crease the primarydeficit neu ro bio logi cal pro cesses that first led to the onset of the ill ness (8). Ad di tion ally, it has been shown that in - di vidu als who re ceived neu ro lep tic drugs ear lier in the course of their dis or der did bet ter in the long term than those for whom treat ment was de layed (8,9). In sum mary, the longer a psy chotic ill ness is al lowed to go untreated, the longer it takes to achieve re mis sion fol low ing the ad - mini stra tion of neu ro lep tic medi ca tion. Moreo ver, for those in di vidu als with a long treat ment de lay, the re mis - sion ap pears to be poorer, and there fore there is a greater risk of sub se quent re lapse (6,8,10 12). Clearly, it is im - por tant to find ways of re duc ing the du ra tion of un treated psy cho sis. In re sponse to these con cerns, pro grams aimed at early in ter ven tion have been de vel oped. Pre limi nary re sults in - di cate that they have had posi tive ef fects. Ear lier treat - ment of ap par ently pro dro mal cases in Buck ing ham shire, Eng land, de creased the in ci dence of schizo phre nia (13). In Mel bourne, Aus tra lia, par tici pants in a pro gram for the early de tec tion of first on set of psy cho sis had a shorter pe - riod of un treated psy cho sis and an im proved out come one year af ter a first epi sode, com pared with a simi lar group of in di vidu als who had re ceived treat ment prior to the early- detection pro gram (7). The re search group in Mel - bourne has clearly led the way, not only in Aus tra lia but in all of the West ern world. As a re sult, pro grams and ini - tia tives are de vel op ing in the United King dom, Scan di na - via and other Euro pean coun tries, as well as in the United States (14). Can ada is taking a leading role in this area, with initia - tives in most prov inces; sev eral pro grams are gain ing in - ter na tional re pute. The vari ous Ca na dian pro grams may dif fer with re spect to their geo graphic lo ca tions, the catch ment ar eas that they serve and the pro vin cial fund ing they re ceive, but their phi loso phies are simi lar. This pa per de scribes an Early Psy cho sis Treat ment and Prevention Pro gram that has been op er at ing in Cal gary, Al berta, for the past four years. The Cal gary Early Psy cho sis Pro gram The Early Psy cho sis Treat ment and Pre ven tion Pro gram (EPP) serves a popu la tion of through a publicly funded health care sys tem. The EPP is situ ated in the De - part ment of Psy chia try in one of the acute- care facilities in the city. The pro gram, which be gan in De cem ber, 1996, was de signed to meet the needs of those young peo - ple who are ini tially di ag nosed with a first epi sode of psy - cho sis. The goals of the pro gram are the early iden ti fi ca tion of the psy chotic ill ness, a re duc tion in the de lays in ini tial treat ment, the treat ment of the primary symp toms of psy cho sis, a re duc tion of sec on dary mor bid - ity, a re duc tion of the fre quency and se ver ity of re lapse, the pro mo tion of nor mal psy cho so cial de vel op ment and the re duc tion of the bur den for fami lies and care giv ers. 12 CPA Bulletin de l APC Fall 2001 automne

3 < YR 0 Weeks Fig ure 2. Duration of untreated psychosis. Re fer rals are made for in di vidu als ex pe ri enc ing a first epi sode of psy cho sis, in di vidu als who have been hos pi tal - ized for a first epi sode of psy cho sis, and in di vidu als who are in the first three months of treat ment for psy cho sis. We offer five ar eas of treat ment: case man age ment, psy - chi at ric man age ment and medi ca tion strategies, cognitive- behaviour ther apy, group ther apy, and family in ter ven tions. The pro gram of fers treatment to pa tients and their fami lies for up to three years, at the end of which pa tients are re ferred to other agencies or to the care of their fam ily phy si cian. In ter ven tion There are three in ter ven tion chal lenges. The first is the need to of fer op ti mal treat ment for schizo phre nia or other psy chotic ill nesses as soon as pos si ble in the very first stages of the ill ness. The hope is to mini mize the dis rup - tion in the lives of young peo ple and their fami lies. Treat - ment op tions are de scribed in more detail be low. The sec ond chal lenge is to in ter vene as early as pos si ble in the ill ness in or der to re duce the du ra tion of un treated illness. Edu ca tion about the type of symp toms to be looking for in the early stages of psy chotic illnesses is cur rently of fered to peo ple who might act as re fer ral sources at schools, col leges and fam ily prac tices to en able them to di rect peo - ple with psy cho ses to treat ment as soon as pos si ble. The third in ter ven tion chal lenge is to ini ti ate in ter ven tion be fore the first epi sode of psy cho sis, during the pro dro - mal phase of the ill ness (15). This is a fairly new and ex - cit ing area that is be ing ad dressed in our pro gram through clini cal re search in our PRIME (Pre ven tion through Risk Iden ti fi ca tion and Man age ment) clinic, where high-risk (ge netic) and ultrahigh- risk (pro dro mal) cases are seen. Ar eas of Treat ment Through out our five ar eas of treat ment, we at tempt to in - crease the in di vidu al s un der stand ing of his or her ill ness and to help pa tients come to terms with their con di tion. We con sider psy chotic ill nesses in terms of a vul ner abil ity model of pre dis pos ing and pre cipi tat ing fac tors. Ge netic in heri tance or early de vel op men tal damage may pre dis - pose an in di vid ual to psy cho sis. Pre cipi tat ing fac tors for the vul ner able in di vid ual in clude ad verse life events, stress and drug abuse. Case Management All pa tients have their own case man ager throughout their three years in the pro gram. The case man ager of fers pa - tients edu ca tion and sup por tive ther apy. Case man age - ment in cludes regu lar medi ca tion clin ics with a psy chia trist. The case man ager is re spon si ble for the co or - di na tion of pro gram, hos pi tal and com mu nity serv ices. Hos pi tal and com mu nity services in clude in pa tient units, day hos pi tal pro grams, schizo phre nia dis or ders pro grams, ac com mo da tion serv ices, cri sis serv ices, vo ca tional serv - ices and the Club house. The case man ager helps the in di - vid ual cli ent to ac cess these other serv ices as needed. Psychiatric Management All pa tients see the same psy chia trist throughout the three years in the pro gram. All are started on second- generation an tipsy chotic medi ca tions. Our policy is to start with very low doses and to go slowly with the medi ca tion. We aim for re mis sion of posi tive symp toms. Medi ca tions will be changed if re mis sion is not achieved. If there is no re mis - sion of posi tive symp toms af ter six months to one year, clo zap ine is of fered. CPA Bulletin de l APC Fall 2001 automne 13

4 Cognitive-Behaviour Therapy Cognitive- behaviour ther apy (CBT) is of fered on an in di - vid ual ba sis. Two dif fer ent mod els are being used in our pro gram. Both in clude psycho edu ca tion about the ill ness, treat ment and out come. The first model is based on the work of Henry Jack son in Mel bourne, Aus tra lia (16). This model offers the op por tu nity to ad dress de pres sion, anxi - ety, de mor ali za tion, low ered self- esteem and vul ner abil ity to fu ture epi sodes. In this ap proach, the first goal is ad ap - ta tion to a psy chotic ill ness. This can be ac com plished through a search for mean ing in the ex pe ri ence, by help - ing the in di vid ual to promote a sense of mas tery, by pro - tect ing and en hanc ing self- esteem, and by try ing to en able the in di vid ual to have a posi tive at ti tude to the ill ness. The sec ond goal is to avoid sec on dary mor bid ity, which is the re sult of a fail ure to adapt and in cludes de pres sion, anxi ety and sub stance abuse. It may be that sec on dary mor bid ity has al ready oc curred and will need to be ad - dressed through this same model. The sec ond model of CBT that we of fer is for the re duc - tion of psy chotic symptoms. This treat ment is based on the Brit ish models of Cop ing En hance ment Strate gies (CSE) (17), Cognitive Be hav iour Ther apy for Psy cho sis (18), and Cognitive Be hav ioural Ther apy of Schizo phre - nia (19). Through CBT, we can identify cop ing strate gies that are al ready in the pa ti ent s rep er toire of re sponses and use these as a ba sis to train the pa tient in a battery of coping tech niques. We can at tempt to re duce symp toms by train - ing the pa tient to cope with and con trol both the cues and re ac tions to symp toms. Our tar gets in clude posi tive and nega tive symp toms, as well as dys func tional thoughts and at ti tudes, at tri bu tions and be liefs that re late to depression. These CBT models em pha size the qual ity of the thera peu - tic re la tion ship, in clud ing al li ance for ma tion, which is en - hanced by an in di vidu ally tai lored treatment design. Thus, the main aims of CBT are to in crease the un der stand ing of psy chotic dis or ders; to re duce distress that arises from the ex pe ri ence of chronic psy chotic symp to matol ogy; to fos - ter mo ti va tion to en gage in self- regulative be hav iors; and to re duce the oc cur rence of dys func tional emo tions and self- defeating be hav iours, in clud ing hope less ness, nega - tive self- image and per ceived psy cho logi cal threat. Af ter be ing sta bi lized on medi ca tion, in di vidu als who con tinue to rate a four or higher on any one posi tive symp tom on the Posi tive and Nega tive Syn drome Scale (PANSS) at the six- month or later as sess ment are of fered CBT. Group Program Our group pro gram of fers the fol low ing groups: Psy cho - sis Edu ca tion, Re cov ery Group, Moving On Group, Good Health Mod ules, and Sub stance Use. Each group is spe cifi cally de signed for a dif fer ent phase of re cov ery fol low ing the first epi sode. Groups offer edu ca - tion about the ill ness, on de vel op ing an un der stand ing of the impact of the ill ness and on ad just ing to the ill ness and making fu ture plans. Spe cialty groups ad dress sub - stances and weight gain. The Psy cho sis Edu ca tion Group fo cuses on edu ca tion about the ill ness, medi ca tions, treatment strate gies and re - lapse pre ven tion. The Re cov ery Group helps in di vidu - als deal with is sues that may hin der their re cov ery and with is sues that would pro mote a healthy re cov ery. The Mov ing On Group is for those in di vidu als who are re - turn ing to their regu lar life style (for ex am ple, go ing back to school or work). This fo cus of this group is on re main - ing well, ad dress ing is sues of hav ing ex pe ri enced a psy - chotic ill ness, cop ing strate gies and re lapse pre ven tion. A spe ci al ity group ad dresses sub stance use. Good health mod ules at tempt to ad dress such is sues as smok ing, nu tri - tion and weight gain. Family Interventions The first goal of the fam ily in ter ven tion pro gram is early en gage ment in a no- fault at mos phere. Each fam ily has its own fam ily worker who is a trained cli ni cian with a mas - ter s de gree. We ini tially offer fami lies six to eight ses - sions on an in di vid ual fam ily ba sis, with a fo cus on edu ca tion about psy cho sis. The goal is to meet with the pa tient and the fam ily members to gether, when ever pos si - ble. We want to help fam ily mem bers un der stand the ill - ness, the im pli ca tions of the ill ness and the po ten tial for re cov ery. During ses sions, we also of fer help with strate - gies for cop ing with the dis or der. Com mu ni ca tion training and problem- solving training are also available for those fami lies that have par ticu lar dif fi cul ties in those areas. The fam ily work ers are also avail able for cri sis in ter ven - tion. Most ses sions oc cur within the first six months of the pro gram. In the sec ond or third six months, we offer a short- term fam ily group. This group helps fami lies to meet other families with simi lar prob lems and to share so - lu tions to dif fi cul ties and gain sup port. In the fi nal year of the pro gram, we of fer help with dis charge plan ning. Assessments We con duct com pre hen sive as sess ments when pa tients en ter the pro gram; at 3, 6, 9, 12, 15, 18, 21 and 24 months; and at dis charge. These as sess ments have both clini cal rele vance and rele vance for out come and pro gram evalua tion. Clinically, as sess ments fo cus on posi tive, nega tive and de pres sive symp toms. Medi ca tion side ef - fects are con tinu ally moni tored. So cial and cognitive func tion ing are as sessed to help de ter mine prog no sis and fu ture plan ning. In terms of pro gram evalua tion, we look at three spe cific ar eas: in di ca tors, in di vid ual functioning and spe cific treat ment evalua tion. In di ca tors which we strive to re duce or elimi nate in clude ad mis sion rates, length of stay in hos pi tal, at tempted sui cides, com pleted 14 CPA Bulletin de l APC Fall 2001 automne

5 sui cides and re lapses. In di vid ual func tion ing in cludes an as sess ment of symp toms and medi ca tion side ef fects, an as sess ment of the qual ity of life and so cial and vo ca tional func tion ing and the as sess ment of neu ro cog ni tive func - tion ing. The as sess ment of in di vid ual func tion ing helps de ter mine where, spe cifi cally, the pro gram as a whole has im pacted. The third area of pro gram evalua tion ad dresses the impact of spe cific treat ments (for ex am ple, an in - crease in in sight fol low ing the Psy cho sis Edu ca tion Group). At the initial as sess ment, we de ter mine the on set char ac - ter is tics, du ra tion of un treated ill ness (20) and pre mor bid ad just ment (21). In di vidu als are di ag nosed ini tially using the struc tured clini cal in ter view for DSM-III-R (SCID-II) (22), and this di ag no sis is re peated at the one- year as sess - ment. Symp toms and medi ca tion side ef fects are as sessed at each tri monthly as sess ment. Posi tive and nega tive symp toms are as sessed with the PANSS (23) and depres - sion with the Cal gary De pres sion Scale for Schizo phre nia (24). The Ex tra py ra mi dal Symptom Rating Scale (ESRS) and the Bar nes Akathisia Scale are used to as sess medi ca - tion side ef fects. A com pre hen sive neu ro cog ni tive bat tery (25) is ad min is tered ini tially, at one year and at two years. So cial ad just ment and qual ity of life are as sessed an nu ally (26). Fam ily as sess ments are con ducted ini tially, at six months, at one year, at two years and at dis charge. For the fam ily as sess ments we use three self- report meas ures. The Psy cho logi cal Gen eral Well- Being Sched ule (27) is used to de ter mine the level of stress or dis tress ex pe ri enced by fam ily mem bers. The Ex pe ri ence of Care giv ing In ven tory (ECI) (28) con sists of ten subscales: eight of them nega - tive (dif fi cult be hav iors, nega tive symp toms, stigma, prob lems with serv ices, ef fects on the fam ily, the need to pro vide back- up, de pend ency, loss) and two posi tive (re - ward ing per sonal ex pe ri ences, good as pects of the re la - tion ship). The Care giver Bur den Scale (29) meas ures the de gree of bur den that fam ily mem bers are ex pe ri enc ing from caring for an in di vid ual with an ill ness. Program Af ter four years, 395 in di vidu als have been re ferred to the pro gram, 284 were ad mit ted to the pro gram, and 172 are cur rently in the pro gram. Sixty- six per cent are male and 34 per cent fe male. Most re fer rals come from psy chia try in pa tient units (33 per cent). Fam ily phy si cians are the sec ond source, and com mu nity and out pa tient psy chia try serv ices, the third. Other sources in clude a Young Adult Pro gram, emer gency rooms, private psy chia trists, the Schizo phre nia Society, schools and col leges, families and self- referrals. At the initial as sess ment, most pa tients have a diagnosis of schizo phre nia (39 per cent) or schizo phreni form disor - der (39 per cent). Four teen per cent have a di ag no sis of psy cho sis not oth er wise speci fied, three per cent a di ag no - sis of brief psy chotic dis or der and five per cent other psy chotic dis or ders (schi zoaf fec tive, drug- induced or de - lu sional dis or der). Age at re fer ral is pre sented in Fig ure 1. Most pa tients are be tween age 18 and 25 years; there are, how ever, sev eral older in di vidu als. A few of these in di vidu als have a long du ra tion of un treated ill ness, and the re main der are women with a later on set. Fig ure 2 shows the length of time that in di vidu als have been un treated be fore coming to our pro gram. Most are being seen af ter they have been ill for six months or less. It is of con cern, how ever, that there are still sev eral pa tients who have been ill for up to a year or more. The mean du ra tion of un treated psy cho sis is 53 weeks, the me dian is 20 weeks, and the range is 0 to 780 weeks. Outcome Our pro gram is in its early stages, and the first in di vidu als are now being dis charged; thus, long- term out come data are not yet avail able. Nev er the less, in terim analy ses sug - gest that there is im prove ment in positive, de pres sive and nega tive symp toms and some im prove ment in cog ni tive func tion ing (30 33). At one year, 72 per cent of pa tients are in re mis sion (31). A re duc tion in fam ily stress and bur den has also been ob served (34). Ad di tion ally, we have re ported a re duc tion in use of sub stances (35). Al - though pre limi nary, these are prom is ing re sults. The PRIME Clinic It has been pro posed that in ter ven tion could be pos si ble be fore the first epi sode of psy cho sis, (that is, in the pro - dro mal phase of the ill ness) (15). This is a fairly new and ex cit ing area that is being ad dressed in Cal gary in our EPP pro gram through clini cal re search in the newly de - vel oped Pre ven tion Through Risk Iden ti fi ca tion and Man - age ment clinic. The PRIME clinic tar gets younger peo ple, ages 16 to 45 years, who are con cerned with a re cent change in their thoughts or feel ings. Signs that some one may be at risk for greater dif fi cul ties in clude a de cline in work or school per form ance; so cial with drawal; trou ble con cen trat ing, fo cus ing or thinking clearly; feeling sus pi - cious or worried about the in ten tions of other peo ple; and changes in the way things look or sound. These ex pe ri - ences may be ac com pa nied by mood shifts such as de - pres sion, anxi ety or out bursts. The PRIME Re search Clinic of fers a medi ca tion trial as well as in di vid ual and fam ily ther apy, fo cus ing on edu ca tion, man age ment and cop ing strate gies. We are also de vel op ing a community edu ca tion com po nent. Summary Our pro gram is de signed to meet the spe cial needs of young peo ple in the early stages of re cov ery from their first epi sode of psy cho sis. We pres ent an op ti mis tic at ti - tude to in still hope for pa tients and families, be cause most CPA Bulletin de l APC Fall 2001 automne 15

6 in di vidu als will dem on strate sig nifi cant im prove ment, if not a full re cov ery, from their first epi sode. Through out our edu ca tional en deav ours, we are ac tive in teach ing against the stereo typ ing, the stigma, the myths and the nega tive at ti tudes that are as so ci ated with psy chotic ill - ness, in par ticu lar schizo phre nia. We edu cate fami lies and pa tients to un der stand psy cho sis in terms of the vul ner - abil ity model and as a medi cal ill ness. We of fer early treat ment with the newer medi ca tions, in clud ing clo zap - ine, if nec es sary. Psy cho so cial in ter ven tions in clude both in di vid ual and group thera pies de signed to meet in di vid - ual needs. Through our fam ily in ter ven tion com po nent, fami lies are ac tively in cluded and in volved in the pro - gram. Fi nally, we have an on go ing evalua tion of pa tient out come and pro gram evalua tion. References 1. McGlashan TH, Fenton WS. 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