Capturing and missing the patient's story through outcome measures : a thematic comparison of patient-generated items in PSYCHLOPS with CORE-OM and PHQ-9

Heal h Expec a ions. 2017;1–5.   | 1 wileyonlinelib a y.com/jou nal/hex Accep ed: 20 Oc obe 2017 DOI: 10.1111/hex.12652 ORIGINAL RESEARCH PAPER Cap u ing and missing he pa ien ’s s o y h ough ou come measu es: A hema ic compa ison o pa ien - gene a ed i ems in PSYCHLOPS wi h CORE- OM and PHQ- 9 Célia MD Sales PhD1 | Inês TD Ne es MSc2 | Paula G. Al es PhD3,4 | Ma k Ashwo h DM5 This is an open access a icle unde he e ms o he C ea i e Commons A ibu ion License, which pe mi s use, dis ibu ion and ep oduc ion in any medium, p o ided he o iginal wo k is p ope ly ci ed. © 2017 The Au ho s Heal h Expec a ions Published by John Wiley & Sons L d 1Facul y o Psychology and Educa ion Science a he Uni e si y o Po o (FPCEUP), Cen e o Psychology a he Uni e si y o Po o (CPUP), Uni e si y o Po o, Po o, Po ugal 2Facul y o Medicine, Ins i u e o P e en i e Medicine and Public Heal h, Uni e si y o Lisbon, Lisboa, Po ugal 3Ins i u o Uni e si á io de Lisboa (ISCTE), Cis-IUL, Lisboa, Po ugal 4Resea ch Depa men o P ima y Ca e and Popula ion Heal h, Uni e si y College London, London, UK 5Depa men o P ima y Ca e and Public Heal h Sciences, King’s College London, London, UK Co espondence Célia MD Sales, Facul y o Psychology and Educa ion Science, Cen e o Psychology a he Uni e si y o Po o (CPUP), Po o, Po ugal. Email: celiasales@ pce.up.p Funding in o ma ion This s udy was pa ially unded by wo esea ch ellowships, one o hem awa ded o CS by he Cen e o Psychology a he Uni e si y o Po o, Po uguese Founda ion o Science and Technology (FCT UID/ PSI/00050/2013) and EU FEDER and COMPETE p og ammes (POCI- 01- 0145- FEDER- 007294), and he second awa ded o PA by he Po uguese Founda ion o Science and Technology (FCT SFRH/BD/87308/2012) Abs ac Backg ound: The e is inc easing in e es in indi idualized pa ien - epo ed ou come measu es (I- PROMS), whe e pa ien s hemsel es indica e he speci ic p oblems hey wan o add ess in he apy and hese p oblems a e used as i ems wi hin he ou come measu emen ool. Objec i e: This pape examined he ex en o which 279 i ems epo ed in an I- PROM (PSYCHLOPS) added quali a i e in o ma ion which was no cap u ed by wo well- es ablished ou come measu es (CORE- OM and PHQ- 9). Design: Compa ison o i ems was only conduc ed o pa ien s sco ing abo e he “case- ness” h eshold on he s anda dized measu es. Se ing and pa ien s: 107 pa ien s we e pa icipa ing in he apy wi hin addic ion and gene al psychia ic clinical se ings. Main esul s: Almos e e y pa ien (95%) epo ed a leas one i em whose con en was no co e ed by PHQ- 9, and 71% epo ed a leas one i em no co e ed by CORE- OM. Discussion: Resul s demons a e he ele ance o indi idualized ou come assessmen o cap u ing da a desc ibing he issues o g ea es conce n o pa ien s, as nomo he ic measu es do no always seem o cap u e he whole s o y. KEYWORDS indi idualised PROMS, ou come assessmen , pa ien -cen ed ou ome, pa ien -gene a ed measu es, hema ic analysis 1 | INTRODUCTION Recen s udies ha e shown a enewed in e es in he indi idual- ized assessmen o change du ing alking he apies.1-3 The s a egy elies on he use o indi idualized pa ien - epo ed ou come mea- su es (I- PROMS), whe e pa ien s hemsel es indica e he speci ic p oblems hey wan o add ess in he apy and hese p oblems a e used as i ems wi hin he measu emen ool. I is assumed ha such an indi idualized app oach is mo e able o cap u e he uniqueness o each pa ien ’s condi ion. Howe e , he e is scan e idence suppo - ing his assump ion. In his s udy, we con as an I- PROM wi h wo well- es ablished s anda dized ou come ools, in o de o iden i y he 2 | SALES E AL. ex en o which pa ien s add i ems ha a e no co e ed by s anda d- ized ools. Psychological ou come assessmen ypically uses epea ed ad- minis a ion o s anda dized sel - epo ins umen s (PROMS), in o de o de ec he pa ien change o e ime acco ding o nomo he ic p inciples o classical psychome ics. The same ins umen , measu - ing a cons uc wi h ixed p e- selec ed i ems ha cap u e a iance on uni e sal dimensions o he cons uc , is adminis e ed o all peo- ple wi hin a de ined popula ion. Assessmen judgemen s abou one indi idual a e based on compa ison wi h o he pe sons (clinical and non- clinical popula ions) answe ing he same s anda dized i ems. Howe e , by being designed wi h e e ence o he whole popula ion, nomo he ic PROMS p obably unde - epo indi idual- speci ic p ob- lems p esen ed by pa ien s, and may con ain i ems o li le pe sonal signi icance.4-7 Ex ensi e esea ch and clinical p ac ice ha e shown ha he e a e signi ican be ween- pe son di e ences in beha iou diso de s (eg Diagnos ic and S a is ical Manual o Men al Diso de s, DSM- 5),8 which canno be cap u ed by he nomo he ic app oach. Fo example, o assess ea men ou comes o dep ession, diso de - speci ic PROMS may be used, which will loca e each pa ien sco e el- a i e o popula ion no ms, hus allowing he o mula ion o a o mal diagnose wi h accep able le els o be ween- diagnos ician ag eemen . In e ences based on hese sco es can be made abou clinical eco - e y by compa ison wi h dys unc ional popula ion sco ing le els, as well as in o ming epidemiological and e idence- p ac ice esea ch (eg iden i ying e ec i e ea men s o dep ession). Howe e , nomo he ic PROMS may no iden i y and measu e change on key a iables ha a - lic indi idual dep essed pa ien s, including his o he speci ic con ex , di icul ies and ea men p io i ies. To measu e ea men ou comes wi hou missing he uniqueness o he pa ien ’s condi ion equi es an idiog aphic assessmen app oach, ha is using psychological as- sessmen ins umen s ailo ed o each indi idual.2,9 Indi idualized PROMS2, also called pa ien - gene a ed ou come measu es, e alua e he deg ee o which a pa ien changes on i ems selec ed by he pa- ien . I ems co espond o pe sonally de ined p oblems o pe inen si ua ional a iables ha can se e as indica o s o change on aspec s o impo ance o each pa ien .2,10 One ad an age o I- PROMS is ha inc eased a en ion is gi en o pa ien s’ p e e ences and wishes in ela ion o hei heal h ca e, which is mo e aligned wi h he alues o pa ien - cen ed ca e.11 Also, he - apis s claim ha he ou ine use o I- PROMS is bene icial in p epa- a ion o clinical sessions, o elabo a e discussions a e comple ion o he session, o supe ision mee ings, and o making clinical deci- sions conce ning ea men .12,13 Fu he mo e, he e is e idence ha I- PROMS show g ea e sensi i i y o change han nomo he ic mea- su es, as he e alua ion o change is based on he p oblems di ec ly elici ed by pa ien s,4,14 and hey p esen accep able psychome ic p ope ies.1 Despi e hese ad an ages, we s ill know li le abou wha we gain using I- PROMS: i we ask pa ien s wha hei p oblems a e, o wha ex en will hey epo i ems ha a e no co e ed a all by well- es ablished PROMS? To ou knowledge, he only p e ious s udy o add ess his ques ion compa ed one o he mos commonly used I- PROMS, PSYCHLOPS (Psychological Ou come P o ile’ see h p:// www.psychlops.o g.uk), wi h CORE- OM in a communi y- based alking he apy se ice in p ima y ca e.5 The esul s showed ha 60% o pa- ien s p o ided no el and ele an clinical in o ma ion in hei ee- ex esponses ha would o he wise no ha e been conside ed in hei ou come assessmen .5 Ou s udy aims o expand on hese indings by ex ending he compa ison o PSYCHLOPS o include bo h CORE- OM, a gene al measu e o psychological dis ess and PHQ- 9, ano he no- mo he ic measu e in widesp ead use bu wi h na ow dep ession- speci ic ocus, and o es hese ins umen s in an en i ely di e en popula ion. 2 | METHODS 2.1 | Pa icipan s Two dis inc samples (psychia ic pa ien s and d ug and alcohol pa- ien s, o al n = 107) we e en olled, in o de o p o ide a b oad clinical ange and ensu e ha indings would be gene alizable o a second- a y ca e popula ion. The inclusion c i e ia we e o be o e 18 yea s o age and unde going ou pa ien ea men . Samples we e ec ui ed as pa o a la ge esea ch p og amme, he In e na ional ne wo k o Pe sonalising Heal h Assessmen (IPHA).3 Fo he i s sample, a o al o 57 psychia ic pa ien s we e ec ui ed om he psychia ic depa - men o a gene al hospi al se ing he Alen ejo a ea (Po ugal). Two we e excluded because o incomple e da a collec ion lea ing a inal sample o 55 pa ien s. A u he 52 pa ien s we e ec ui ed om h ee ins i u ions specializing in he ea men o d ug and alcohol addic ion diso de s in he Lisbon a ea (Po ugal) (see Table S1). 2.2 | Ins umen s PSYCHLOPS15 is a b ie I- PROM con aining h ee ee- ex i ems indi- ca ed by he pa ien : “Choose he p oblems ha oubles you mos ,” “Choose ano he p oblem ha oubles you” and “Choose one hing ha is ha d o do because o you p oblem (o p oblems).” Each ee- ex i em is sco ed on a 6- poin Like scale o se e i y ( om “0 = no a all a ec ed”, o “5 = se e ely a ec ed”) and du a ion ( om “0 = unde 1 mon h”, o “5 = o e 5 yea s”). PSYCHLOPS also con ains a ou h p ese ques ion (“How ha e you el in you sel his las week,” sco ed om “0 = e y good” o “5 = e y bad”). These ques ions co e h ee domains: p oblems, unc ioning and well- being al hough we excluded well- being as his ques ion was s anda dized and con- ained no quali a i e da a. The inal compa ison be ween ins umen s was conduc ed using PSYCHLOPS da a ob ained om esponses o he p oblem and unc ioning domains. Clinical Ou comes in Rou ine E alua ion—Ou come Measu e16 is a 34- i em sel - epo measu e consis ing o 4 dimensions: well- being ( ou i ems); social unc ioning ( wel e i ems); p oblems/symp oms ( wel e i ems); and isk (six i ems). Each i em is a ed on a 5- poin Like scale anging om 0 = no a all, o 4 = mos o all he ime, e e ing o pa ien expe ience o e he las week. Pa ien Heal h Ques ionnai e—9 i ems17 is a 9- i em mul ipu - pose ool o sc eening, diagnosing and moni o ing he se e i y o | 3 SALES E AL. dep ession acco ding o DSM- IV- R c i e ia. I ems a e sco ed om 0 (“no a all”) o 3 (“nea ly e e y day”). Ques ions e e o pa ien expe- ience o e he p eceding o nigh . All measu es we e adminis e ed in Po uguese. 2.3 | P ocedu e Pa ien s we e in i ed o a i e a he hospi al one hou p io o hei i s appoin men , o a p e- ea men e alua ion session. PSYCHLOPS was he i s ins umen o be adminis e ed, ollowed by CORE- OM and PHQ- 9 in andom o de ; a socio- demog aphic da a collec ion o m was p esen ed a he end. Pa ien s wi h li e acy o isual p oblems we e no excluded bu o e ed suppo by a esea ch assis an who adminis e ed he ools o ally. The analysis p ocedu e ollowed h ee majo s eps: 2.3.1 | F ee- ex coding The ee- ex esponses we e coded using a 61 sub heme classi i- ca ion sys em,18 p e iously used by Ashwo h e al5 o compa ing PSYCHLOPS and CORE- OM. I a esponse did no clea ly i in o an exis ing sub heme, a new sub heme was c ea ed. Fou new sub hemes we e added, esul ing in a ca ego iza ion sys em o 65 codes. Despi e esponden s being asked o lis one p oblem pe ques ion, some lis ed mo e han one, in which case only he i s p oblem men ioned was analysed.5 Validi y was ensu ed by h ee independen judges (IN, RC and CB) coding each i em independen ly, and when ag eemen could no be eached, a p ocess o iangula ion was adop ed in discussion wi h he s udy supe iso (CS). In e - a e eliabili y, gi en by he a e - age o Cohen’s kappa ac oss all a e pai s, was s ong (p oblem 1—0, 81; p oblem 2—0,83; unc ionali y i em—0,89). T iangula ion was equi ed in less han 1% o he i ems (n = 14). 2.3.2 | Con en ma ching The 65 sub hemes de i ed om PSYCHLOPS esponses we e com- pa ed wi h he con en o CORE- OM and PHQ- 9 (see Tables S2 and S3, espec i ely). Two independen judges (IN and RC) de e mined whe he each sub heme did o did no map di ec ly o i ems included in CORE- OM and PHQ- 9, classi ying he ma ching in o one o ou ca ego ies: (1) de ini e yes: he e is a di ec and clea ma ching o con- en s (eg sub heme “Sleeping p oblems” and CORE- OM/PHQ- 9 i em ha epo s p oblems in sleeping); (2) possible yes: sub heme epo s a p oblem ha is p obably ela ed o a p oblem epo ed on CORE- OM o PHQ- 9 (eg p oblems o “concen a ion a wo k” could p obably be connec ed o CORE- OM/PHQ- 9 anxie y i ems); (3) possible no: ague sub hemes, o gene al, ha migh o migh no be associa ed wi h CORE- OM o PHQ- 9 i ems (eg “Rela ionships” is a ague s a emen and di icul o de e mine whe he i is ma ched o any CORE- OM o PHQ- 9 i em); (4) de ini e no: clea ly he e is no ma ching, sub heme wi h a di e en con en . When ag eemen could no be eached, a hi d judge was consul ed and he o iginal ee- ex esponses on PSYCHLOPS we e compa ed wi h he CORE- OM (o PHQ- 9) i ems o p o ide mo e e idence on ma ching. In e - a e eliabili y ( wo- way mixed in aclass co ela ions, a e age- measu es, absolu e ag eemen ) was s ong o con en ma ching wi h CORE- OM ( anging om 0.92 in i em 23 o 1.00) and PHQ- 9 ( anging om 0.99 in i em 9 o 1.00). Judges we e awa e o he aim o he ca ego iza ion ( hey knew ha hypo he ically I- PROMS cap u e addi ional in o ma ion in he ou - come measu emen p ocess), which could esul in coding bias. To minimize his e ec , a sepa a e coding da abase was p epa ed o each code con aining he ee- ex i ems only, ha is anonymized and wi hou in o ma ion conce ning pa ien s’ demog aphic o clinical da a, as well as sco ings on PSYCHLOPS o in he nomo he ic coun e pa s. Mo eo e , con en non- ma ching was only ca ego ized o “de ini e no” i ems; i ems classi ied as “possible no” we e no ca ego ized as non- ma ching. 2.3.3 | Desc ip i e s a is ics We calcula ed he equency o each sub heme ound in PSYCHLOPS and he equency o pa ien s who indica ed each sub heme in PSYCHLOPS. We also calcula ed he numbe s and p opo ion o pa ien s abo e he clinical h eshold who indica ed a leas one sub- heme which did no map in o CORE- OM and PHQ- 9 (ie equency o pa ien s wi h a leas one “de ini e no” i em). This compa ison was con- ined o pa ien s who we e classi ied as “cases” by each nomo he ic ins umen . As such, we compa ed PSYCHLOPS wi h PHQ- 9 only o i ems o mula ed by pa ien s classi ied as dep essed and PSYCHLOPS wi h CORE- OM only o pa ien s classi ied as ha ing clinical psycho- logical dis ess. Fo CORE- OM, “caseness” was de ined as pa ien s wi h a sco e o  ≥10 and o  PHQ-9 a sco e o  ≥10.19,20 IBM SPSS S a is ics 21® was used. 3 | RESULTS The 279 i ems indica ed by pa ien s in PSYCHLOPS we e classi ied in o 51 sub hemes ou o a possible maximum o 65 sub hemes. The mos equen con en s we e wo k- ela ed p oblems (26%) (eg “losing my job a he end o he con ac ”) and ela ional p oblems wi hin he amily, namely, being wo ied abou someone in he amily (23% o he sub hemes). In all, jus o e hal o he sub hemes desc ibed some ype o ela ional di icul ies, such as b eaking up wi h a pa ne ship (eg “I ha e no cou age o b eak up wi h my husband”), o ela ional di - icul ies wi hin he amily (eg “knowing ha my mo he is alone wi h my a he a home”). Pa ien s in bo h samples indica ed p oblems which con ained a la ge ange o hemes (sample 1- 42 hemes; sample 2- 35 hemes). As shown in Table S4, pa ien s en e ing subs ance misuse ea men epo ed mo e addic ion, wo k- ela ed and money p ob- lems, whe eas pa ien s in psychia ic se ing indica ed mo e o en being wo ied abou someone in hei amily and wo ies abou heal h. The compa ison be ween he 51 PSYCHLOPS sub hemes and he wo nomo he ic measu es showed ha a la ge p opo ion o sub hemes we e no p esen in CORE- OM (33.3% classi ied as “de ini e no”) no in PHQ- 9 (84.3%, “de ini e no”) (see Table S4). A la ge p opo ion o 4 | SALES E AL. pa ien s wi hin he clinical ange epo ed a leas one sub heme in PSYCHLOPS ha was no co e ed by CORE- OM o by PHQ- 9: 71% and 95%, espec i ely (Tables S4 and S5). This pa e n o esponses was obse ed in bo h samples (summa y in Table S5). 4 | DISCUSSION These esul s add o ea lie indings by Ashwo h e al5 and con i m ha PSYCHLOPS adds no el in o ma ion o CORE- OM as well as o PHQ- 9. The inding ha wo o he mos widesp ead ou come meas- u es do no cap u e he p oblems expe ienced by a la ge p opo ion o pa ien s en e ing alking he apy challenges con en ional app oaches o conduc ing ou come assessmen in ou ine clinical se ings. The mos common assessmen s a egy is o combine gene ic measu es, such as CORE- OM, which allow compa ison o cases and se ices (key inpu s o heal h quali y managemen ), wi h popula ion- speci ic measu es ha ha e a na owe ocus and co e pa icula aspec s as- socia ed wi h speci ic heal h impai men condi ions, such as PHQ- 9. Howe e , ou esul s show ha he ange o p oblems people epo is mo e di e se. Adding measu emen ools o he assessmen p o o- col in o de o elici a wide ange o p oblems may no be a ealis ic s a egy, especially in ou ine clinical se ings, whe e easibili y and accep abili y issues call o simple ou come assessmen p o ocols and sho measu es. B ie indi idualized measu es (PSYCHLOPS is a one- page measu e designed o sel - comple ion) may o e a aluable s a egy o pe sonalizing assessmen , by gi ing pa ien s he oppo u- ni y o ailo he e alua ion p ocess, and ha ing “a legi ima e oice in in o ming he i ems ha de e mine he s a us o hei ou comes”.21 Implica ions o ou esul s o ou come assessmen conce n he sig- ni icance o hemes decla ed on I- PROMS bu no on s anda dized measu es which will equi e u he esea ch. A key issue is he ex en o which hese uncap u ed hemes a e ele an o he apy p og ess o ou come o he apy. I may be he case ha hey co a y wi h hemes p esen in he s anda dized in en o ies, hus ha ing li le impac on he measu emen o change o e he cou se o he ea men . We do no know whe he cap u ed o uncap u ed hemes demons a e g ea e esponsi eness o change in I- PROMS. Despi e hese limi s, we ha e demons a ed ha a subs an ial p opo ion o epo ed psy- chological dis ess is no cap u ed by wo o he mos widely used and alida ed men al heal h ou come measu es. Does his mean we a e missing he pa ien ’s s o y? Ou p elimina y indings suppo he use o I- PROMS o cap u e a mo e comple e e sion o he pa ien ’s s o y. ACKNOWLEDGEMENTS We would like o hank Cláudia B inque e (CB) and Ri a Ca lo a (RC) o hei collabo a ion on da a collec ion and da a ea men . ORCID Célia MD Sales h p://o cid.o g/0000-0002-2586-8469 REFERENCES 1. Ellio R, Wagne J, Sales CMD, Rodge s B, Al es P, Ca é M. Psychome ics o he pe sonal ques ionnai e: a clien - gene a ed ou - come measu e. Psychol Assess. 2016;28:263-278. 2. Sales CMD, Al es P. Pa ien cen ed assessmen in Psycho he apy: a e iew o indi idualised ools. Clin Psychol Sci P ac . 2016;23:265-283. 3. Sales CMD, Al es P, E ans C, Ellio R, On behal o IPHA G oup. 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Sales CMD, Gonçal es S, F agoei o A, No onha S, Ellio R. Psycho he apis s openness o ou ine na u alis ic idiog aphic e- sea ch? Men Heal h Lea n Disabil Res P ac . 2007;4:145-161. 14. Ashwo h M, Robinson S, God ey E, e al. Measu ing men al heal h ou comes in p ima y ca e: he psychome ic p ope ies o a new pa ien - gene a ed ou come measu e, “PSYCHLOPS” (psychological ou come p o iles). P im Ca e Men Heal h. 2005;3:261-270. 15. Ashwo h M, Shephe d M, Chis ey J, e al. A clien - gene a ed psy- chome ic ins umen : he de elopmen o “PSYCHLOPS”. Couns Psycho he Res. 2004;4:27-31. 16. E ans C, Mello -Cla k J, Ma gison F, e al. CORE: clinical ou comes in ou ine e alua ion. J Men Heal h. 2000;9:247-255. 17. K oenke K, Spi ze R. The PHQ- 9: a new dep ession diagnos ic and se e i y measu e. Psychia Ann. 2002;32:1-7. 18. Robinson S, Ashwo h M, Shephe d M, E ans C. In hei own wo ds: a na a i e- based classi ica ion o clien s’ p oblems on an idiog aphic ou come measu e o alking he apy in p ima y ca e. P im Ca e Men Heal h 2006;4:165-173. 19. Connell J, Ba kham M, S iles WB, e al. Dis ibu ion o CORE- OM sco es in a gene al popula ion, clinical cu - o poin s and compa ison wi h he CIS- R. B J Psychia y. 2007;190:69-74. | 5 SALES E AL. 20. Imp o ing Access o Psychological T ea men s (IAPT). The IAPT Da a Handbook: Guidance on eco ding and moni o ing ou comes o sup- po local e idence-based p ac ice ( e sion 2.0): Na ional Heal h Se ices (NHS) 2012. 21. Ba kham M. Pa ien - cen e ed assessmen in psycho he apy: o- wa d a g ea e bandwid h o e idence. Clin Psychol Sci P ac . 2016;23:284-287. SUPPORTING INFORMATION Addi ional Suppo ing In o ma ion may be ound online in he suppo ing in o ma ion ab o his a icle. How o ci e his a icle: Sales CMD, Ne es ITD, Al es PG, Ashwo h M. Cap u ing and missing he pa ien ’s s o y h ough ou come measu es: A hema ic compa ison o pa ien - gene a ed i ems in PSYCHLOPS wi h CORE- OM and PHQ- 9. Heal h Expec . 2017;00:1–5. h ps://doi.o g/10.1111/hex.12652