clinical management of inflatntnatory bowel disease: beyond...

REVIEW

Clinical management of inflatntnatory bowel disease:

Beyond disease activity. Part II: Strategies for

tnaxitnizing psychosocial health

T MICI IAEI. VAL.LIS, Pl ID, GEOFFREY K T URNRLJLL, MD

TM V ALUS, GK TuRNBULL. Clinical management of inflammatory bowel disease: Beyond disease activity. Part 11: Strategies for maximizfog psychosocial health. Can) Gastroenterol 1992;6(2):87-92. Inflammatory bowel disease (IBO) remains a chronic, relapsing disorder that can be very d isabling to che patien t ancJ often leads to significant problems in liv ing (eg, emotional distress, social isolation, work impairment and disability). ln Part I of this paper, published in an earlier issue of this Journal, the authors reviewed available evidence indicating that health statlls is influenced strongly by psychosocial fac tors in addit ion to disease activity. The purpose of the present paper is to provide a specific framework w guide the gastroenterologist in the assessment and management of psychosocial factors that impact on the health status of the IBO patient. Guidelines for managing these psychosocial factors arc provided. A central thesis of this paper is that the gastroenterologist, whether alone or in conjunction wi th a mental health specialist , muse manage psychosocial as well as d isease activity factors in the ongoing care of patients. (Pour resume, i1oir page 88)

Key Words: Inflammatory bowel disease, Psychosocial J>roblems, Psychosocial treatment, Quality of life

Departments of Psychology, Medicine and GC1stmenrerology, Cam/) 1-l ill Medical Centre and Dal/1011.sie Uniq•ersiry, Halifax, Ncwa Scotia

Con·es/)ondence and reprints: Dr TM Vallis, De/)artment of Psychology, Cam/) Hill Medical Centre, 1763 Robie Street, Halifax, Nova Scotia B3H 302

Received for /mblicatiun August 6, 1991. Acce/ned January 31, 1992

CAN J OASTRClENTEROL Vo, 6 No 2 MARCI I/APRIL l 992

IN PART I OF Tl IIS TWO-PART SERIES,

the auLhors reviewed the litcraLUre on the role of psychosocial factors in inflammatory howcl disease (IBD) ( l ). This review indicated that it is inappropria te, hasccJ on Lhc accumu lated scientific daLa, to view JBO as due to psychopad,ology (cg, the 'Crohn'~ rcrsonali ty' as causal ). There is suppt)rt, however, for l he notion Lhat I BD can rcsulL in psychiatric difficulties, hut the majority of IBD patients docs nOL meet the criter ia for a psychiatric diagnosis. Therefore, the mosL valuable approach LO evaluating psychosocial factors in IBO is co adopt a quality of li fe perspective from which psychosocial difficulties arc seen as the result , not the cause, of IBO. The authors' previous review further indicated that IBO (particularly Crohn's disease), negatively impacts on a variety of psychosocial factors including emotional distress, feel ings of well-

87

V ALLIS AND T URNBULi

Traitement clinique du syndrome du colon irritable: Au,dela de l'activite de la maladie. Partie II: Strategie de maximisation du bien,etre psychosocial

RESUME: Le syndrome du colon irritable (SCI) est une affection chronique et recidivante qui pcu t ctre invalidante et perturbe souvent le mode de v ie (troubles emotionnels, i ·clement socia l, incapac ite de travail et invalid ice). Dans la part ie J du presen t article public precedemment, les auteurs examinaient les observations indiquant que, en plus de l'activite de la maladie, l'ecat de sante du patient est fortement influence par des facteurs psychosociaux. Ces travaux viscnt a fourni r un cadre de travail qui guiclera le gastroenterologue clans !'evaluation et la gcstion des facteurs psych osociaux qui influent sur l'ctat de santc du patient porteur du SCI. !ls foumissenc des directives permettant de gcrer ces facteurs. La these ccntrale des auteurs est 4uc le gastroenterologue, scul ou avcc la collaboration d'un spccialis te de la santc mentale, doit continuer a rraiter a la fo is les aspects psychosocia ux et les facceurs d 'activ ite de la maladie chez ses patients.

being, in terpersonal relationships and symrcom management (eg, ph ysic ian visits). G iven the complex ity involved in the impact o( !BO on psychosocia l factors, an assessment that incnrrorates increasingly spec ific levels of inquiry is recommended. T he current study illustrates this by describing in detai l a sequenced approach ro assessmen t and a treatment approach char can be followed by t he gastrocntcrologisL

STRATEGIES FOR MAXIMIZING PSYCHOSOCIAL

HEALTH IN IBO It should be noted that disease ac

tivity ca nnot be treated separately from the psychosocial context of the lBD patient. T herefore, th e gastroenrero logist i~ faced with managing these r sych osocial issues, e ither a lone or in conjunction with othe r health care providers. The following is intended as

Quality of life assessment

Good quality of life ---. Manage symptoms based on disease severity

Poor quality of life

Proceed with detalled assessment

External psychosocial factors

Internal psychosocial fac tors

- stressful life events

- social supports

- emotional distress

- illness meaning

- coping ability

~----'--~ ----------------- Physician advice/ support

Treatment plan

---------------- Naturally existing treatme nts

Referral to mental health specialist

Figure 1) Model for asscssmenr of psychosocial facwrs related w health status in inflammatory bowel disease

a guide for the assessment of psycho~oc ial factors, a long with recommendations for treatme nt. Unless demonstrated ocherwise (cg, in cases where lBD patients have c lear psychiatric difficulties which may have preceded the development of IBD) , it is best ro av sume that psychosocial problems relat· eel to IBO a rc the result, not the cau~c. of the disease process. To guide the reader, a schema of the authors' recomme nda tiom is provided in Figure I. Stage 1: The au thors recommend that assessment of rhe IBD patient begin by evaluating overall qua lity nf lifo. [')if.

fcrcnt levels of formality can be used in this assessmen t, ranging from gener,11 ques tions concern ing overa ll life saci~foction to more speci fic question~ about coping with IBD and its impact, and possibly inc lud ing detailed assessmcnt1 with semistructured interviewing anJ/ or questionnaires. Attention should be paid to psychological well -being a~ well as psychological dbtres ; hoth areas should be probed speci fi call y. G;istrocntcrologists should hecome fam il iar with a qual ity of life mea5ure - these questionna ires tend to he easy ro administer and often can he completed q uickly by patients in a waiting room. T he questionnaires can be gcneral qLiality of life measure~. nut spec ific to IBD, such as the sickness impact profile (2) or the menta l h ealth inventory (3). lBD-specific quality of life measures, such as the l BD questionnaire (4), arc becoming ava ilable. It should be note<l, however, that normative darn wi ll have to be collected on th ese instruments with mo patien ts in order to interpret validly a given patient's responses. Stage 2: Assessing overa ll qua I icy oflifc will iden t ify a suhsample of pat ients requiring fu rther assessment ( those with poor well -being and/or emotional Jis, tress). For the remaining group of pat ients (ie, those who~e qu;ility of li fe 1s

good), the gastroenterologist can manage the illness experie nce hy focusing on d isease activity variables a lone. The management of those requiring further assessment I ikcly wi 11 he more involved, however, depending on as~essment results. In stage 2 as essmcnt, the authors recommend that the gastroentcrologist assess relevant psychosoc ia l factors ex-

88 CAN ) GASTROENTEROL VOL 6 No 2 MARCI I/ A PRIL 1992

ternal co the individual. S tressful events and socia l supports should he assessed.

When inquiring into stres. ful events attention should be paid to stressors associated with the disease (for example, stress experienced by a young woman because of we ight gain due to

steroid use) as well as to other types of ~tressors. Disease-specific stressors include a patient's history of!BD relapses plus the extent and invasiveness of past and current medical treatments. Further, researc h on the role of stressful I ifc events has demonstrated the importance of separating major li fe events (eg, di vorce, unemployme nt , financial debt, death of a loved one) from minor daily hassles (such as wmmuting lo ng distances in heavy traffic, mino r disagreements with co-workers) . These nondisease-specific stressors have been shown to impac t negatively on quality of life and illness experie nce (5).

While stressful events can detract from a pe rson's quality of life, social supports enhance it by exerting a positive influence in at least two ways (6): directly improving self-estee m and I ifc satisf;\Lt ion , and serving as n buffer, preventing negative foctors, such as stressful events, from h aving a suhstanrial impact. For example, rcc,ivcry from surgery o r adjustment to a n ostomy bag can he improved hy supportive fomily members. Lack of soc ia l support can magnify the stress assoc iarcd with an illness, and it has been shown that support can predict illness onset (7). As well, it is common for the illness experience itself to lead tn decreases in ocial support (cg, the middle-aged

man with Crohn 's disease who withdraw fro m socia l service cluhs due to

concern of emharrassing himself hy incontinence ).

It is recommended that the gastroenterologist inquire specifkally into these aspects of a patient's life. Inquiry about general supports sh ould be made (eg, "do you have people in your life that you can rely on when you need them ?") as well as about support spec ifi cal ly related ro !BL) a nd its management (eg, "do you have people in your life who help you deal with your physi cal ymptoms?" ). Family composition, current I iving situation and resources

for chi ld care/fami ly responsibi li ti es arc useful w assess, e ither as sources nf support or psychosocia l d ifficulty. If s ignificant problems me uncovered, intervcntitm in to these areas sh ould be incorporated into the 1mmagement rlan . Stage 3: In addi t ion to the external factors, the illness experience can he influenced strongly by interna l factors. Illness meaning, emotional distress and coping ability/style should be examined.

Research into the psycholt)gy of illness consiste ntly has demon strated that patients' beliefs about the ir symptoms (cause a nd c ure) a re very powerful influences on the ir behaviour (8). T he refore, it is helpful to inquire into patients' specific appraisals of thei r illness. Researc h into this a rea suggests that individuals develop idinsyncratic helicfs about the identity, consequences, cause and time frame of their symptoms. By umlerstamling the pmient 's own views on these issues ( wh ic h often requires pers istence in questioning), much va luable informatio n can be gained. For instance, with the patient who believes his or her sympto ms tn be minor a nd of no consequence, lack of adhen:ncc tll a medical regimen would nor he surprisi ng. Simi la rl y, horclcssncss can he understood i( a pat ient views the illness as imminently life-threatening and uncontrnllahlc (regardless of the actual disease severity or prognosis).

Several psychometric scales have been deve loped to assess systemat ically d imensions on which patients mnkc judgements ahout illnesses. One such questionnaire, t he implic it models of ill ness questionna ire, is composed of four subscalcs which assess serio usness, control. change a nd personal respon sibili ty (9). T he use of these scales, initia lly in research studies and eventually for cl inical purposes, will improve one's ab ility to understand and in te rven e upon this important dime nsion .

Emotional d istress is an i1nporrnnt area of functioning for a ll individuals, a nd there is some suggestion that distress med iates help seeking ( 10). T hree types of emotional distress particula rly arc important to cxrlore: depression/ dysphoria, a nx ie ty/worry and anger/

CAN J GA~TROENTEROL VOL 6 No 2 M ARCI I/APRIL 1992

Psychosoc ial factors In IBD

frustration. In assessing the presence a nd inten

sit y of these emotions one sho uld not he restricted to psychiatric diagnostic cond itions. Often with medical patients there is s ignificant distress that docs not involve the c lassic symptoms required for a psychiatric diagnosis. Further, d istress might be mediated by the illness, e ithe r di rectly (cg, the individunl wh,1 is dcprcs~cd hccausc of lBD symptoms) o r indirectl y (cg, the ind ividua l who is depressed because he or she cannot work due to rno symptoms or because hi5 or her spouse has left due to diffic ulty coping with IBO). Anger and frustrntion particularly arc important w explore and often arc overlooked. It needs to be appreciated that hy virtue of having a chronic illness, phys ic ian visits arc a necessary, but not a lways welcome, aspect of care for IBO patients. Adherence problems often arc mediated hy unexpressed or unacknowledged frustration at the medical ~ystcm a nd its limits. Open discuss ion about inevitable frustrations can go a long way in circumventing such problems.

Research intn coping abili ty/sty le indicates that there is a high degree of difference in how individuals handle stressful situations. Inqu iring in to typi

cal strategies nnd t heir effectiveness is recommended. Distinguishing between act ive (informntion seek ing, problem solv ing, etc) a nd pass ive (praying, for example) fo rms of coping can be useful. Asking for spec ific examples often provides suffic ient detail to Judge the adequacy of a person's coping ability. O ne must also take into consideration the degree ll control the individual 11ctually may have over the situation. There is greater active control associated with social isolation in response to disease d iagnosis then there is wi t h adjusting to t he stress of an tistomy bag o r forced ret ircmcnt from work ( ic, the latter are less easily reversed than the former). S tage 4: By follow ing the ahovc assessment framework, the gastroenterologist impl eme n ting trea tment strategies wi ll develop a comprehensive understanding of the full illness experience of an I BD pat ient. There a rc complex presentations possible given the numhcr of

89

VALLI~ AND TURNBULL

TABLE 1 Procedure tor treating inflammatory bowel disease within the gastrointestinal unit, Camp HIii Medical Centre

Gastroenterologist assessment

Quality of life (general)

Psychosocial adjustment

Resources

Supports

Stressors

Treatment

Adjustment to disease

Overall level o f distress

Education

Employment

Family composition (nuclear and extended)

Living situation

Drug pion benefits

History of IBD flare-ups Extent/invasiveness

o f post medical treatment

Difficulties with employment

General negative life experiences

Flexible use of in/out patient services

Regular follow-up

Ongoing assessment of disease activity

Advice. support and encouragement

/BO lnflommotory bowel disease

factors anJ their interaction:,. De:,pllc chis complexity, the ,1sscssmem cask is importan t to tai lor a specific treatment co meet the mJividual need:, 1lf the patient. The fo llowing approach to treat ment is recommcnJcd by the c urrent authors. The cornerstone of management strategy for the gastrocntcmlogiM shoulJ remain med11.:al mtcrvcnuon baseJ on disease activity. In addition, the principle of par:,1mony ( if a c ho ice between a simple a nd complex treat-

Psychologist assessment

l Quality of life (specific)

Psychosocial adjustment Resources

I Supports

I Stressors

Treatment

Emotional well-being (type and extent o f coping)

Psychological distress (presence of significant emotional difficulties)

General coping ability; potential to improve coping

Potential for family to c hange

Psychological assessment of perceived/tangible supports

Assess family and support network

Dolly hassles Major stressful llfe events

Assess skill at coping with stressors

Stress management training

Individual psychotherapy

Problem-solving training

Advice. support and encouragement

mc nt cx1sb, choose the simple when all ebc is c4ual) is advocated in planning management to add to trcauncnc efficacy and appropriateness. Three ma m strategic:, should he considered.

First , attention should he foc used on phys ic ian ad vice, educauon anJ support. Assessment of the psych1lsocial factors re lated to 4ual1ty of life in !BD is an essential part of treatment. Given a clear and derailed undc rstanJmg of disease activity a:, well as internal and

externa l psychosocia l factors, many 1s· sues which impair treatment can be dealt with efficiently hy rhe gamoentcrologist. UndcrstanJing, support, aJvice and education quickly will prove effective ( 11 ). However, without an awareness o r undcrsrnnJmg ot relevant psychmocia l fac tors, no such intervention can rake place.

ScconJ, 111 situauon, where mtervcn tion by the gasrrocntc rolog1st 1s 111-

sufficient, or for some reason mappropna te, considerauon shou Id he given to na turally ex ist ing trcatmcnb or other forms of intervention hcfore com1dcring referra l to other health care probsionab ( which often requires extc1N,·t waiting periods, and a ppropriate re, sources may not ex ist ). Making use llf family support system:, (nudear a, well as extended fami ly) and encouraging involvement in community organi:a· cions, either general (such ,is the YM/ W CA) or !BO-specific (cg, the Canadian Foundation for Jleiw. and Col1w.) can go a lon g way to overcomL' dysphona, a nxiet y a nd genera l distres~. and can improve sm.ial 1solac1on and fu nction.

In cases where office 1..onsu lrnuon and natural support systems arc 111adc-4uate to address the needs of the !Bl)

patient with 1mpa1reJ quality ot life,

referral to a memal health profess ional, the third st rategy, should be cons1Jercd . Referrals may he of t wo l ypcs. The prefcrreJ referral woulJ he to a psyc ho l1lgist, psychiatrist o r social worker wi th specific intc rcsb and expc rusc in IBD. If no specia lized service exbts, referral en a gene ra l mc n rn l health ,erv1ce is recommended. By fo llowing these trcauncnt options 111 the sequence presented above ( 1e, moving to a mmc invasive treatment only o nce .1 less invas ive trea tment has failed), the greates t thcrnpcutic henefit can be realized 111 the most cost effct.t ive manner.

Readers may he in te reswd 111 l he approach to management of I BD palll'llb

w11h111 the gastrointcsunal u111 t at Dalhousie Un iversity\ C.1mp Hill Medical Centre. A collahoracivc arrangement ha~ been developed between ga~lmcntcmlogy and psycho logy to ma nage the p~ychosocial needs of IBD patients. Psycho logy runs a nnc-day clinic 111 thc

90 CAN J GASTROENTI ROL Vt)l 6 NO 2 MARt'l 1/APRII 1992

gastroi ntestina l unit to maximize communication between the disciplines. The psycho logist serves as a consultant to gastroenterologists, e ither to discuss the management of a specific case or to

assess and treat the patient <lircctly. A genera l sch ema of the running of th is serv ice is presented in Table 1. inc luded arc the types of inquiries made by the gast roenterologist an<l by the psychologist , and how they work together.

CURRENT STATE OF PSYCHOLOGICAL

TREATMENT OF IBO This paper would not be complete

without a brief review of the effecti veness of psychosocial treatments for IBD. C urre ntly there arc very few psychosocial treatment studies publish ed. Groen and Bastiaans ( 12) reported on 35 ulcerative colitis patients of whom 29 were treated a lmost exclu~ivcly with surportivc psychotherapy. No reliab le outcome measures were reported and no experimental methodo logy was employed. N onethe less, rhc authors asserted that psychotherapy can be highly effective provided the therapist (physic ian or psychiatrist) has a genuine concern for patients. Freybcrgcr ct al ( 13) also reported 0n supportive psychotherapy (followed hy dynamic interventio ns) in a small group of IBD patients. Using student thcrnpists they demonstrated greater improvement un measures of mood (anxiety and depre~sion) in a group of patients trea ted with psychotherapy versus ,1 control group of untreated patients. No dma on physical symptoms were reported, and the data were collected lWCr just one week.

In contrast to a supportive or <lynamic model of psychothe rapy, Joachim and colleagues ( L 4) evaluated the usefulness of stress management

REFERENCES l. Vall is TM, Turnbull GK. C linical

management of lBD: Bcyund J i,cnsc act ivtty. Part I: As,e,,ing psycho,ocial facwrs. Can J <.,a,t renterol I 992;6:39-41.

2. Berger, M, Bohhitt RA, Pollard WE, Martin DP, Gi lson OS. The sickness impact profile: Validation of a health status measure. Medical Care 1976; 14:57-67.

3. Veit CT, Ware JE. The structure 1l

techniques with lBD patients. They treated a group of 15 patients with deep breathing, imagery and massage. No control group was used, but treatment was reported to promote feelings of well-being and increase coping with lBO. A randomized contro lled trial of stress ma nagement was reported by Milne and co-workers ( 15 ). Eighty !BO pat ients were treated e ither with stress man agement (aucogenics, problemsolving train ing and communication skills) or with a no-treatment contro l procedure. Measures of self-re ported d isease severi ty and psychosocial well being were collected with results indicating that stress management led to

signi ficant improvement on both measures, whereas the conrro l procedure did not ( the two conditions were not compared directly with statistical procedures). Unfortunate ly, despite random assignme nt , the control group had significantly lower scores on symptom severi ty and distress measures prior tn treatment. Therefore, lack of change in this group could he due to ,1

floor effect. In a recent study, Schwartz and

Bl;;inchard ( 16) reported on a rnn t ro lled , randomized treatment study for a mixed sample of ulcerative colitis and Crohn's disea e patients. Treatment consisted of education, stress management ( relaxation tra ining and biofeedhack) and cognitive coping stra tegics.

A symptom-monitoring waiting list was the control group. Resu lts on symptom measures indicated that treatment increased symptoms, relative to

the con tro l group, bur treared subject, reported improvements on measures nf distress and coping. Nonetheless, the data indicati ng that treatment had negative effects on symptom experience is alarming. Sch wart.: and Blanchard ( 16)

p,yclwlogical d 1,1rcss ,md well -heing in genera l populations. J Con C lm Psychol 1983:5 l:730-42.

4. G uyall G, Mitchell A, Irvine EJ, ct al. A new mca,ure uf he.i Ith ,1,1111, for clinical rri,1b in intlmnm,nory bt1wcl du,ease. Gastroenterology l 989;96:804- l 0.

5. Brown GW, I hmis TO. Life Events and Illness. New York: Guilford, 1989.

6. Cohen S. Syme SL. b,ues in the Study

CAN J GASTROENTEROL VOL 6 No 2 MARCI!/ APRIL 1992

Psychosocial factors in IBD

have suggested that their treatment migh t be effective only for C rohn 's disease patie nts. When they examined their da ta for ulcerative coli tis and Crohn's disease patients separately only Crohn's disease patients showed positive responses. Clearl y. fu t ure treat ment studies wi II need to examine ulcerative colitis and C rohn's disease patients separately. Based on available data, psychosocial probl ems appear more prevalent with Crohn's disea e compared with ulcerative coli tis.

CONCLUSIONS Based on the two papers in this ser

ies, it can be concluded that IBD, particula rly Crohn's dbease, can hrive a significant negative impact on quality of life. This effect occurs due to interaction of disease activity and associated psychosocial factors. l t is best ro view impaired quality of life linked with IBO as resul ting from the illness. There is tW

c lear evidence that reduced quality of life necessarily is due to psychopathology.

No evidence indicates that psychopnthology causes lBD. A subsample of lBD patients will no doubt have psychiatric illness (either pre- or post dating the onset of illness), but it is unclear whether thb occurs at a ra te greater than in normal populations.

T reatment of the ii lness experience of IBO patients is organized hest hy the gastroentero lng ist who asse sc, general quality of life and (when appropriate) looks at relevant in ternal and external p~ychosocial factors, and then use, this assessment to plan treatment. T rc::irment should he approached flexibly and inc lude regular medical follow- up, advice, support and ed ucat ion as well as naturally existing programs and referral tn mental health specialists.

of S,ici ,il Supp,m nnd He,11! h. No:w Ymk: Acaden 11c Pres,. 1985.

7. Zegam LS. Stn:~, and the development of ,omatic d i,ordcrs. In: Gnldhcrg L, Rrc:n 1t: S, eds. I landhnol of Strc,,: T heoretical and Cli111ca l A,pcc ts. New Y1,rk: Free Press, 1981:l H -52.

8. Leventhal H, Zimmcrm,111 R, Gucmann M. Compliance: A sclfregulmion perspective. In: Gentry WO, eJ. l landhook of Behavioral Medicmc. New fork: Guilford, 1984: 169-416.

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VALLIS AND T URNRULL

9. Turk DC, Rudy TE, Sa lovey I). Implicit models of illness. J Behav Med l986;9:453-74.

IO. McHugh S, Vallis TM. lllness Behaviour: A Multidisciplinary Model. New Y nrk: Plenum, 1986.

l l. Kurl inder KA, O'Brien MF.

92

Psychosocial issues. In: Peppercorn MA, ed . Therapy of Inflammatory Bowel Disease: New Medical and Surgical Approaches. New York: Dekker, 1990:24 3-65.

12. G roen J, Bastiaans J. Psychotherapy and u lcerative colitis. Gastroenterology l 951;18:344-52.

13. Frayberger H, Kunsebcck H -W, Lempa W, Wellmann W, Avenarius H-J. Psychotherapeutic interventions in alexithymic patients: With spec ial regard co ulcerative colitis and Crohn's patients. Psychother Psychosom 1985;44:72-81.

14. Joachim G. The effects of two stress management techniques o n fee lings

nf we ll-being in patients with inflammatory bowel disease. N un; Pap l 983; l 5: l 5-8.

l 5. Milne B, Joachim G, Niedhard tJ. A stress management pmgram for inflammatory bowel disease paticm;. J Advan Nur~ 1986;11 :561-7.

16. Schwarz SP, Blanchard EB. Evaluatio n of psycho lng1cal rrcacmenr for inflammatory bowel d isease. Bchav Res Ther 1991;29: 167-77.

CAN J GASTROENTEROL VOL 6 No 2 M ARCl!/APRIL 1992

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