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Aug 6, 1991 - TM V ALLIS, GK TURNBULL Clinical management of inflammatory bowel ... Correspondence and re prims: Or TM Vall1s, Department of ...
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Clinical management of inflammatory bowel disease: Beyond disease activity. I. Assessing psychosocial factors T M ll'I IAEL VALLIS. Pl ID, CEOFFREY

TM V ALLIS, GK

K TURNHU!.L, MD

TURNBULL C linical management of in flam matory bowel

disease: Beyond disease activity. I. Assessing psychosocial factors. Can ] Gastroentero l 1992 ;6(1):39-43. lnfhunmaco ry bowel disease (IBO) is a chronic, relapsing disorde r that can be very d isabling to the pat ient and often leads to significaQt lifestyle problems (eg, emotiona l distress, socia l isolat ion , work impairment and disability). ~va ilable ev idence srrongly indicates that health status is influenced by psychosocial f;i.cto rs as we ll as disease acti vity. This i~ the first of a two-pa rt series, th e purpose of whic h is to provide a framewo rk to guide th e gastroenterologist in the assessment and man agement of psych osocia l fac tors chat impact o n the healt h sta tus of the IBO patient. Part I conta ins a review of existing approaches to ~ssessme nc of psych osocial fac tors, whic h include foc using on psychosomat ic or psychia tric facto rs. The growing body of ev idence in support of a 'biopsychosocia l' approach to understandinganc:l treat i11g health sta tus is reviewed. 1.n this approach , d ist ress and disabili ty are nor setn as due to psychopa tho logy, hut ste mming directly from t he experien ce of illness itself. Part 11 will focus on specific strategies to maximize psychosocial adjustment to this d isabling illn ess. Key W ords: lnf1ammawry bowel disease, Psychiatric illness, Psychosocial factors, Psychosocial treatment, Quality of life

Traitement clinique du syndrome du colon irritable: Au-dela de l'activite de la maladie. Partie I : Evaluation des fac teurs psychosociaux RESUME: Le syndrome d u c6lon irritable (SCI) est une affection chroniq ue et recidivante q ui peut etre invalidante et perturbe souvent le mode de vie ( troubles emotionnels, isolement social, incapacite de t ravail et inva lid ite). Les donnees recueill ies indiquent fo rtement que l'etat de sam e est au~si influe nce par des facte urs psychosocia ux quc par l'activite de la ma ladie e n soi. 11 s'agit de la premiere eta pe d'une etude en deux parties. Elle vise afournir un cad re de trava il Oe/)artmen r of Psychology ancl Oe/ic1rrmenc of Medicme , Division of Gasrroemerolugy, Cam/) Hill Medical Centre and l)allwusie University, Halifax, Nova Scotia Correspondence and re prims: Or TM Vall1s, Department of Psychology, Cam/i Hill Medical Cenrre, 1763 Robie Srreet, Halifax, Nova Scotia B3H 3U2 Received Ji>r publication August 6, 1991. Accepred }amu:iry 3 1, 199 2

CAN

J GA~TROENTERL)L Vm 6 Nn I JANUARY/FEBRUARY 1992

I

NFLAMMATORY ROWEL DISEASE

( IBD) is ,1 chron ic ii Inc s consisting of exacerbations and rem issions of d isease, with many rmr ien t::. hav ing unpred ictable tl are-urs. Treat men t of IBO is symp tomati c, invo lvin g medica tio n , d iet and o the r nutritional measures, ri nd surge ry. Surgical resect ions of the bowel in Crnhn 's d i~ease are used judi ciously ,1s re lapse nfrer surgery is common. S urgical resection in ulcerat ive colitis can he curative, hut such procedures leave t he patie n t without the large bowel and rectum. G iven that the treatment of IBD 1s symrtnmatic, it is understandable that gast roen rerologists have been most in terested in d isea~e act ivi t y in evaluati ng t he experience o( lBD pat ients ( l ). A nu mber of reliable rating scales have been deve loped to index disea e activity. For Crnhn 's disease, these in c lude t he C rohn's Disease Act ivity Index (2) and t he Dutch Activity Index by Van H ees er a l (3). For ulcerc1Livc colitis, the St Mark 's lnJex (4) and the Truelove classificatio n (5) have been developed to index disease activi ty. Whi le such scales can he u ed reliably, questions have recently been raised as to whether disc,1se act ivity a ltmc is sufficie rn fo r assess ing and treating l BD pati ents ( l ). T he re a re at least two reasons for suc h questions. First, c li nical expe r ie nce with IBD pat ie nts e m-

V Al.LIS ANI) TURNBULL

qui guiJcra le gastrocntcrologuc clans !'evaluatio n ct la gcstio n des facteurs psych osociaux qui influent sur l'crar f functio nal status. In a 5C ries of stud ies Drossman and CLllleaguc5 (6-8) co llected di sease act iv ity, gene ral hea lth and q ua li ty uf life measures on a sample of !RD patients. T h e ir data indica ted that patie nts exper ie n ced soc ia l a nd psyc h o logical impa mnc nt more than ph ysical im pairment. Furthe r, Crohn 's disease paticnrs repLlrtcd a lower qua li ty of life t han ulcera ti ve co litis patients, a finding replicated in two studies, one invnlving

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a large samp le of members of a national association fo r ilei tis and coli t is (6,7). Q ua I ity of life measures were mo re strong ly w rrc lmed wirh genera l health s t atu~ tha n were di~case uuiv ity measures, and quality of li fe measu res pred icted physician v isit~ independently from d isease measures. The reve rse was true for pred icting ho~pita lizations a nd surgeries, where disease acti vity measures we re superior to qua lity ofl ife measures (8). Collectively, these Jara arc conv incing in ind icating the need fo r gastrocnrero logist~ to assess qua lity of li fe issue~ in addit ion to d isease ac t ivity, since the (WO faccors pred ict meaningfu l p,ll icnt outcomes. Accepting the need to assess qual ity nf life leaves o ne with the question of hnw to cond uct such assessments, and how w inte rvene once a~scssments arc complete. In pan I of thb rwo-part series, th e au th1)rs review a n umber of approachc:. w assessment, and iden tify their strength~ and weaknesse~. Part 11 (9) recommends an apprnach to clin ica l management whic h best addresses the complexities common wirh IBO.

HISTORI CAL PERSPECTIVE The approach r,> psychosocial factors as they impact on IBD ha~ evolved through n number of stages over t he years. The earl y psycholugica l approach was c ha racterized by the assumpt ion that the presenting ph ys ical symptoms were not t rue disease-based symptoms, hut pseudosymptoms, hrnugh t on hy und e rl yi n g psyc h opat h o logy (cg, repressed psyc h ,,dy n amic confl ict~, hypersens itivity to stress) ( IO- l2). Research attempt ing tn ident ify personal ity protiles aswciaLrt of this approach, and II Ith the com•mc mg argument that the a,~ump11on that !Bl) patients have person,d1ty defect, leads Ill ncgati\'e llUtLomes (d1,cnm1nation, 1ncrc,1scd en11nion,1 l dbcre~,. ,oci,d rc1ecrton) ( 12 ), th ts appn iach ,hl iukl he ahandlmed.

IBDAND PSY HIATRIC ILLNESS The data to ,uggcst that I Bl),, ha,ed ll11 psyLhological ahnmmalit ie, arc largely withour lounda11on; ho11'L'ver, thb doc~ nllt mean th.it psyLh11l1lg1rnl faL tors are 1rrclevan1. It nrny he that there ts a correlation hetween psych1,1mc ill nc,~ and !RD. Following th is apprrn1ch, studies ha\'e examined [BL') ['.ltlents ior the rre,ence uf psyd11.1tnL d,,ordcrs. Whyhrow ct al ( 18) repo rted a psychiatric t1ll1rhid1t} rate uf 62.5 110 in their ~1mple ol Crohn\ disea,e patients, the most common problem being dcpres~ion. McKcgm') ct al ( 12) reported that 40% of t hetr sample of u lcern ti ve C(ll t1 1, ,tnd Crohn's disease patients had psychtatrtL d1agn1ises. Clouse and Alper, (2 1) reviewed a number of studies exam1111ng the rL·latllin,h,p between gastrotnt l'stmal 11lncs,es and psychiatric comlit inn, (defined hy tlw L)iagrn >sttc and Srnttst tL,11 M,111u.1I, 3rd edn ). They concluded that Crohn's disc,ise patients - hut mit ukenlll\'L' coltti, p:mcnt, - arc at .1 highl'r rbk for majur dcpressi,111, compared with medicallv ill controls. Similar rc,ults using ,truv

turL·d 1n1erview1ng have ab11 hl'L'11 rq,ortcd (2 3-26). Further, it ha, hecn ,,1ggcsred that 111crc,1'L'd depre,,1on might acc,1t1nt for the lower qualtty 1if li fe of Crohn\ d1,casc paucm, (I). lfom· accepts that psychiatric illness oiuld ha\'L' ,1 negat ivc dfrct ,m medic.I trL',1t111ent, h) dtrculy .1fku111g qualit) of life and indirectly alkctmg Iactor, ., uLh a, adherence, then standard l"YLht,ttrtc interventtons (cg, antidepressant, anx1(1lytic nr :mtip,yLhntiL medication) cnul.l he ,1dm111istered t,i palll'11h whn meet the uitCrtil fm ,1 psyd11atrtl.. disorder. Treatment niuld hL' 1mplcmc11ted hy the gastroenreni logist, pnssihly with consulwnon rn a psy1.hia1n,t (fm uncl1mpl1cmcd L,1sc,), or a referral cuuld be m,1dc t(l ,1 psyd11atnc scn•tce (for murL' cnmpltLated or ,e,·cre L,lse,). While thts appniach may he useful fiir the trL·,1tmen1 (ll the ,ubgrnup 1if 15[) patients with nm cnm1 tant psycht,llrtl disorders, it dnes not guide the llT,11 mcnr of IRL) patients ,, tthout p,ycht,Hrtc d1,ordcr,. The v:duc of thi:-- appniad1 is therefore directly related tn the prc,·alcncL' of psyL h 1arnc umd I t1ons 111 l RD partents. Blanch,1rd et al ( 20) reportL'd th.it tlw prevalence of psych 1at rte d ,,order, in IBD parients ,,·a, no different from that 111 a n,lrmal nmtml \.(roup. An overall pre, aknLL' rate lll 25 1\1 was reportL'd in their sample, ,uggesting that psyLhtamc d1,orders among IRL) pm 1enb ts not crnnmon. Othe r, who have reported ,t higher incidcncL· nf psyL h 1a t r1L d1,turhancc among IBL) 11ntients ( 12, I8) suggest that mild fnrms \ll deprcsstnn or ,111x 1et) ( not maior p,yLh tatric disorders) arc mlist Clltntnllll. Fun her, 1t mw,t hl' assumed that ,tand,1rd psychiatric treatments \\'ill he ns effective 111 !Bl) p:nicnb with ,1 psychiatrte di-.11rderas in non-lHDpsychtatriL pm1cnts. ft may he that cnncrnn1tant !Bl) sympt,nm interfere with standard psychiatrtl treatment (q~. 18[) pat 1cnts might hl' less receptive to ,1 psychiatric approach, they might he less adherent t(l psychiatric rrL·atment, nr thL')' might experience side-effects from p~ych1arric med1catillns that 11npact negauvdy on their gastro1ntest1nal disease). Add itlll11.tl research is nel'ded \\'irh respect to the ,tppnipnate psychiatric tre,1t111cnt

forth 1, ,uhgmup uf p:11 icnts, hut for nn\\' psychiatric nm,ul tauon and treatment would he appropriate for this ,uhl!niup. The corrclat ion hL·t ween p,ych iat riL illness and !Bl) d(ll's not addrc,, the issue ot c1usaltty. There 1s nll L'Vllkncc to suggest that pat 1ents wtth psych1;11nc ii lne,s ,ire mnrc rn ll1L' tll de\'elop !Bl) than those w1thuut psyd1i.1mc ill111..•ss. Daw (ll1 \\'hl'ther p,yd11,1tric illne-.s 1, more cnmmnn among p,1t1ents \\ irh !Bl) arc inLonsistcnt. Snme i1we,rigatm, claim p,ych1atric dine" a, a significant risk factor (12,23-26), :111d ud1L·r, suggL''t that the rate ol r,yd11atriL illness 111 JBL) 1, nn higher than 111 the general popul.1tion ( I l),20). It i, true that !Bl) can ht· a maJllr lite ,trL·ssllr, :111d for a suhgroup ch 1, stress might produce symrtoms ,ufftt icnt fnr a psyd11atric diagno-1s.

PSYCHO OCIAL CONSEQUENCES OF IBO I\L'Cent data ,uggest th ,ll psychosou:il diff1u1lt 1e, a,snciated with !Bl) arc the dirL'll result nf the sympc01m nf the di,L',be, and nnt the c:nisc of the d1,ea,e (22). Therdorc, patients' experience pf their tllt1L'SS, and iactor, that 111fluence this experience, shou ld he idcnuticd and managed. Engel (27) proposed a hiopsychnsncial model tn help identify ,pcuftc factors that determine the experience (lf illncs,. In this model, hiolog1cal (1e, d1sea,l'), p,yLhologic:ll and S(lCtal factors arc proposed w internet to effect il lness expcrie11Lc. The ,tssumpt Hin 1, that t hcse fouors apply to al l I BD pat ients, to a greater or lesserdegrcl'. Therefore, 1t 1s important w assess each patient for the presence of difficulties 111 these area, (9). A number of relevant p,ychosocial factors shou Id he comidcrl·d when a,sessmg the illness exreril'IKl' of IBD rm 1cnts. A, argued hy ( ;arrct t :ind Drnssman ( I ) thL' way in wh1d1 a patient (and other,) experienle illi1l..·ss has mmc w do with hllw wel l a p:1t1en 1 feels than l1hject1\'L' disc,1,e actl\' ll) markers would predict ( l,6-8,22 ). Rccenr appmnche, with other chronic dlne:-.,e~ havL' led co the de"elormenr llf quality of life mca:,,urc~ to nsscs:,, mme ohjec ttvely t he,e ,uhJcL t tVL' feeling,. Along tl1l'~l' line,, an IRD-~rl'LlftL

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\I ·\I I I'- \:-,;p Tl R~J\l 11 I

quality uf life 111l'H:, ure has been devcl11ped, rhe 'inflammatory ho\\'el disease quest1onn,11re' (28). Initi al evaluation 1if thi s scale b encuuraging, and , uggesb that 1l b ,ensil 1vc tn c han gcs in disease act ivity over tltnl'. Psychological distress: Inc reas 1n g ev idence indicates thai I BL) can he th l' calJ',e, not the resul t, 111 psychos11C1,1l difficulties ( 1,6-8,22). In pa n ic ulnr , IBD can prnduce psycho lug1cal d istress rhar impairs quality nf life. Mitchell ct ,ti (29) interviewed ulcerative n1l111s ,md Crohn 's disease patienb, ex,1mm111g n1mpla 111 ts o f primary htiwel symptoms, gene ra l ,y,temK ') mptonb, a, \\'ell as c mol inna l, fun ctin nal and socia l 1mpa1rmcnt. T hey report that primary hnwel and system ic symptoms, :tlong with l'tnnu1m,1 l 11npa1rment, were cnmmun prnhkms 1dent1fied h) hot h patient groups. Fifty pert.cnt of patient, spont.rne\lusly repori ed feelings of depression, 44 1\, repnrted frust rar1\ln ,tnd 4 1'\, rep11rted d1ff1cult y with work/ ,chrn 11 artemhmcl'. Snrensen ct ,11 ( 30) mten 1ewed a grou1, nf Cnihn's diseasl' pati.::nrs, a nd cnmpared rhem wnh p,ir1enh wnh ac ute Q edit.a l prnhlcms. Tlw 1wn groups could nnt he d 1ffen:n t1a1ed nn sr1?cdecl relapse. Their data l,1ilcd to suppnrt the hypothes is that inueasl·d stress or depress ion preupit.ned symptom llare-up. Employment status and IBO: The poss1hlc effects of IBD sympwmatology on employment is ~ign ificant. Impaired empk1yahilit) would not only ,1ffcct psychological we ll -being, hut could reduce an ind1v1dua l\ abili ty to pay for expe n sive medical trcaLmcnt. Wyke and rnllcagucs ( 36) Mudied the employment cxpcn crn;c, of 144 IBD pa11encs over six years in England. T hey reportl'd rhat 72% ot the patient-, were working, a nd 57°4> had main tamed th e same Joh over rhc pcnnd of ~wdy. HowL·ver, 11ver t h e same period 50% of the patients reported makmg mtx.lificacions Ill the ir work primari ly due to bowel di sease. In a study of Dan ish Crohn's disease paricnts, Sorenson ct al (3 l ), repPrted rhat 65% were employed and of th ese, nnly 28% took more than JO sick days in the prevmus year. Sonncnhcrg ( 37) reported on t he frequency of d isabi lity in Ccrmany for patients with lfil) from 1982-86. H e found that Jbahility from Cmhn 's dbcasc in women wa, t w1cc t hat fo und m men hut was sim ilar in both sexes with u lcerative cnlitis. Compared wnh other diseases,

both Cro hn 's d beasc nnd u lccrat1vl colitis caused more patients under thL ageof40 to be disabled. This t'inding ha, serious soc ioeconom ic implicauom fnr those with IBD, which 1s compounded by rhe findin g th at 'wh 11 c col lar' workers were more often .ift ccted h) IBD than 'blue co llar' worker, (37). A recent Canadia n stud y (38) rcptirtl·d that SOtY.1 of C rohn 's disease pacients a nd 60% of ulcerative colius pm1ents did not miss a n y time fro m work. At the sa me time, h nwevcr, 20"o of tlw Croh n 's disease patients and 15 1){, of the ulcerative co lit b pa til'ncs lost mme than fou r weeb of work tn o n e year. Thus, it a ppears that the m.iJmity 111 !RD patients 1s able to nrn 1nt,11n employment hut a s ma ll percentage has significant difficulties. Thi:-, m,1y m app ropriatcly suggest tu employers that IBD patients, as a group, arc a pmir risk. thus mc reas ing Mre~s levels 111 m ,111) pauents. Gamm! ct cil (16) nbn exammed e mplnymcnt status in their ,cudy 1if Crohn \ disease pa tient s. A lth11ugh they were unable lll demonstrate a currelation between work record ,md J1,case activity (i ncluding the n umber lif surgeries), they found a u1rrel.1uon he tween work record a nd patie nt s' level of anx iety. These data ,,uggcst that, as \1·trh disease srn tus, d1sem,c acti vity alo ne 1s a poor pred1Ctor of how par1cnts will ctipc with their disease a nd it may he tha t Cmhn 's di sease and ulccrnuvc col1u, patll'llts with ponr work records may h ave m ore psychologir\ .1c 11\'lt\ 111 panents with ( 'mhn \ d1,c,1'c. (.;u, 1980;2 I:279-86. Pnwcll Tu,k J, R11nn RL, Lenn,mlJone,JE. A u1mp,1r1su11,1f 11r:1I pn.:d111-.1l,mc givl'n a, ,mglc ur mul11plc• ,l:iil \ du,c, fur ,1tt 1\·e prouol, 11 ll 1'. :-icmd J (. ,:1st rrn.:111 c1\ 11 1989; 1 ,:8'l'l-7. Truclln·e SC, W11t, LJ ( 'nrti,on,· 111 ulccr.111\'C col1t1.s: Fmal 1,·p11rt ,u1.1 therapc'lilk trial Hr l\kd I 1955;2·1041 ·H. 6. Dm,,11w1 l)A, l'a1n,k J)L, Mn Lhl'il CM. Z:1ga1111 EA, Appkh:1u111 l\11. Health rchlll'd qua ill\ ,,t life 111 mtlamm:Hory hm,·cl d1>l',he. Dig l )i, Sci J91{9; H: I , 79-86. Dms.,man DA, l\l1tchell (. 'l\l, Arplch:u1111 Ml, l'am1l1,ltlC (1llllp,1r1,(ll11>f pal 10.:nt., w1th uln·r:111\'l' u>l 1t1, :111d ( 'n1hn\d1,l',bl'. P,,,ho,11m /',.led 1970;,2·15 \-66 h,r,I CV, Uluhcn ( ,A, C.1-1dnuurn T edc,1:ll P A psyrh1.nr1, , t llm Med I968; ,O:W9-2 I. Wh1tchc:1d WE, Ro,maJlilll LS. P.,·h,w1111ir:1l mcd1nne .1ppm,1d 1e, 1,, ga,u·, >int,·st mal d1.,urdi:r.,. J (. 'on.,u lt (. '1111 P,yd111l 1982;5L1:972 ~t Hland1ard EB, Sd1,1rft L. Sd1war: t..;p, Sul, JM, R:irlow l)I I. Th,· n,Je 1>1 .111,iety .md dq1rc"1ml'. lkha\' Rl', Thl'r J990;2H:4Ll 1-5. ( 'loLL,e RE, Alp,·r, l )H. Th,· rl'l.1t11>n,h1p nf p,yd11,Hnt 11.ird WE, l\l:trlln l)J', Uil",11 l)S. The ,1ckne" 1mp,tLt prnflk: V:1li,l.111on uf a he,1l1h ,t:1tu, me,Nire. l\ kd ( :arc Jl)7(1;J4,57-67. ,2 l\1alk11 SJ, ll'nnard-l1111l', JL, H111glq J, (,d.111 F.. ( :.,Jiu,. L.111Lc1 I978;ii:6 l 9-2 J. , \. Ua:·:ird BG The qu,1lit\ ,,t 111!rlll'll[Cl(ll )988;2:5) 6.

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