Talking about life and IBD: A paradigm for improvingpatient–physician communicationRod Mitchell a, Arjan Kremer a, Nigel Westwood b,Lisa Younge c, Subrata Ghosh d,⁎

a European Federation of Crohn's and Ulcerative Colitis Associations, UKb National Association for Crohn's and Colitis Disease, UKc St Mark's Hospital, Harrow, Middlesex, UKd Imperial College London, Hammersmith Hospital, London, UK

Received 27 July 2008; accepted 31 July 2008

KEYWORDSInflammatory boweldisease;Quality of life;Crohn's disease;Ulcerative colitis;IBD consultation;Physician–patientrelations;Patient survey

Abstract

Despite recent awareness and understanding of quality of life (QOL) issues in IBD, nearly half ofphysicians in Europe do not ask their IBD patients about their QOL and nearly half of patients do notinitiate a conversation with their physicians about QOL, according to a recent survey by the EuropeanFederation of Crohn's and Colitis Associations (EFCCA) [S. Ghosh and R. Mitchell, Impact ofinflammatory bowel disease on quality of life: results of the European Federation of Crohn's andUlcerative Colitis Associations (EFCCA) patient survey. J Crohn's Colitis. 2007;1(1):10–20.]. Effectivetreatment has been shown to help improve QOL in Crohn's disease patients [E.V. Loftus, J.F. Colombel,R. Panaccione, et al, Adalimumab sustains qualify-of-life improvements in patients with Crohn'sdisease: 2-year data from CHARM [P078]. Poster abstract presented at ECCO 2008, Lyon, France.,S.B.Hanauer, B.G. Feagan, G.R. Lichtenstein, et al, Maintenance infliximab for Crohn's disease: theACCENT I randomised trial. Lancet 2002;359:1541–1549.], suggesting there is a need to improvephysician–patient communication about QOL and new treatment options that may help. To addressthis need, a multidisciplinary European group initiated by EFCCA (including an IBD consultant, nursespecialist, an IBD patient and two IBD EFCCA representatives/carers) set out to describe the keyaspects of an ‘ideal’ IBD consultation andmain considerations when talking about the impact of IBD onpatients' daily lives. These insights can serve as a framework for developing practical tools to helpfacilitate IBD patient–physician communication.© 2008 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.

1. Why is QOL important in IBD?

In a recent pan-European patient survey, although 76% ofulcerative colitis (UC) and Crohn's Disease (CD) patients re-ported that they were at least somewhat satisfied with theircurrent treatment medications, most also admitted that

⁎ Corresponding author. Gastrointestinal Section, Imperial CollegeLondon, Hammersmith Hospital, Du Cane Road, London W12 ONN,UK. Tel.: +44 208 3833266; fax: +44 208 7493436.

E-mail address: s.ghosh@imperial.ac.uk (S. Ghosh).

1873-9946/$ - see front matter © 2008 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.doi:10.1016/j.crohns.2008.07.002

ava i l ab l e a t www.sc i enced i r ec t . com

Journal of Crohn's and Colitis (2009) 3, 1–3

VIEWPOINT

their symptoms continued to greatly affect their ability toenjoy leisure activities (73% UC and 78% CD) and their abilityto work (66% UC and 72% CD) 1. These findings underscore theimpact IBD continues to have on patients' daily lives.One challenge gastroenterologists face during the IBD

consultation is that they must rely largely upon patients toself-report details surrounding symptom frequency, seve-rity and duration and then make judgments based on thatinformation about the effectiveness of their treatment.Due to a number of varied and complex psychosocial factors(e.g., fear of surgery, lack of trust, low self-esteem, per-ceived lack of time/interest), some patients may minimisetheir symptoms or avoid telling the whole story. By exploringthe impact of their IBD on various aspects of their dailylives (e.g., school, work, sports, social activities, interac-tions with family and friends), healthcare professionals cangain a clearer picture of how patients are affected by theirdisease and how well their current treatment strategy isworking for them.Discussing the impact of IBD on a patient's daily life

can also help provide a context for consideration of newtreatment options. For example, both biologic agents ada-limumab and infliximab have been shown to provideimprovements in QOL for patients with Crohn's disease.2,3

Also, in the EFCCA survey, a high percentage (75%) of patientsreceiving biologic therapy stated their QOL improved fol-lowing biologic therapy.1

Despite the benefits of patient–physician dialogue aboutQOL and treatment options, these conversations still do notoccur as often as they should: Nearly half of physicians inEurope do not ask their IBD patients about their QOL andnearly half of patients do not initiate a conversation withtheir physicians about QOL, according to the EFCCA survey1.Additionally, 56% of patients reported that their doctors donot discuss newly developed treatments for CD or UC, al-though 87% of UC and CD patients said they would be wil-ling to try a new type of drug therapy as an alternative tosurgery.1

There is an ongoing need, therefore, to provide practi-cal tools that help close these communication gaps andencourage a shared-care approach to the management ofIBD.

2. The other half of the equation— empoweringIBD patients to discuss QOL

One important way to empower patients to partner withtheir physicians is through education and support surround-ing their IBD consultation — for example, helping them bet-ter understand the purpose of their visit, the role of the IBDspecialist, what to expect from a good consultation and whattheir healthcare professionals need to know in order to helpmanage their disease effectively.A multidisciplinary group initiated by EFCCA (including an

IBD consultant, an IBD nurse specialist, an IBD patient and twoIBD EFCCA representatives/carers) recently met in London toshare their perspectives on patients' informational needswhen preparing for the consultation, what resources couldbe made available to help patients both before and afterthe consultation, and how their emotional and motivationalneeds could best be addressed. A paradigm was proposed for

an ‘ideal’ IBD consultation (shown in Table 1) which reflectsthese key considerations. Efforts are now underway withinEFCCA to turn these insights into useful resources for IBD pa-tients across Europe, including the use of an Internet portal.In the proposed paradigm, an IBD patient is assessed

through both objective and subjective measures, includingimpact on QOL and effect of treatment. Objective measuresmay include a physical exam, sigmoidoscopy, blood tests,weight, and indices of stools, urgency, frequency, etc. Thehealthcare professional can also ask the patient howhis or herIBD symptoms impact a variety of aspects of the patient's life,such as work, hobbies, school, social activities and relation-ships with friends, family or partner. An important question toask as part of this conversation is: ‘What did you do beforeyour disease that you can't do now?’ During the consultation,the healthcare professional should inquire about otherpotentially important factors such as incontinence, sexualrelationships and emotional well-being. If necessary, the pa-tient may be referred for additional tests which reflect theoptions and needs discussed.Another key aspect of the consultation is a ‘prescription

for information’ that directs the patient to additional supportspecifically surrounding their particular situation. This modelis currently being used in the UK for other therapeutic areasand it was suggested that it be adopted for IBD as well.Referral to a patient organisation should also be a commonpractise in order to offer additional resources, education andemotional support to patients and their families. Addition-ally, the patient would be educated about their role in the IBDconsultation and understand the positive results of workingclosely with their healthcare professionals in the manage-ment of their disease, including the benefits of shared-care.It is important to consider that a patient will have dif-

ferent informational and support needs at different points inhis or her life aswell as based on the severity and impact of hisor her symptoms. For example, a young adult between the

Table 1 Proposed paradigm for an ‘ideal’ IBD consultation

• Disease assessed and analysed regarding○ Impact on QOL and other domains at that time (note:timing may be routine check-up or review for flare) – —e.g.: ‘What did you enjoy doing before that you can't donow?’

○ Impact and effect of treatment (effect and side effects)• Assessment may include objective measures (e.g., stools,urgency, weight), physical exam, sigmoidoscopy, bloodtests

• HCP should also ask about○ Incontinence○ Sexual relationships○ Emotional well-being (e.g., self-image, self-confidence,ability to cope)

• Patient may be referred for other tests (e.g. colonoscopy,radiology)○ These tests should reflect the options discussed, and theneeds that have been established

• Patient should be given a ‘prescription for information'information’ personalised to their situation — e.g., child,young adult, mature adult; mild, moderate or severedisease

2 R. Mitchell et al.

ages of 16 and 18 may be experiencing a range of emotionssurrounding self-image whereas a mature adult in their mid-40s may be concerned about being a burden on his or herfamily; a child may require basic information about thecauses and prognosis of the disease, whereas a 20-year-oldpatient may be wondering about the prospects of finding along-term partner and having children. Parents/carers willrequire other assistance. Emotional responses in general tendto increase with disease severity, and therefore additionalsupport may be needed by these patients vs those with moremild disease.4 An appreciation of these individual variances ishelpful to facilitate improved communication as well.The outcome of these educational efforts is an empow-

ered patient — a patient who is educated about the IBDconsultation and his or her role in it, feels confident that heor she is the most important part of the consultation and canhave an active conversation with his or her healthcare pro-fessional, and aims for a discussion with his or her healthcareprofessionals that has QOL at the forefront of the consulta-tion. As a result, the patient feels that he or she is receiving avalued, personalised service.

3. Conclusion

By having a meaningful dialogue with IBD patients about theirdaily lives and how they are affected by their symptoms,gastroenterologists can improve communication and gainmore insight into their expectations of treatment, abilityto adapt and treatment objectives. While starting an IBDconsultation with a discussion about QOL with a patient maynot appear to be the most direct approach, it could po-tentially uncover volumes of information about how well apatient's needs are being met. Meanwhile, there is a need toeducate IBD patients about their role in the IBD consultationand provide them with resources and support to help em-

power them to speak openly and honestly about how their IBDis affecting them (Fig. 1). Efforts to address these needs areongoing through EFCCA.

Conflict of interest

Funding for the educational initiative described is providedto EFCCA through an unrestricted educational grant fromAbbott.EFCCA also receives support for other work and projects

from a number of IBD related companies including the PanEuropean Survey highlighted (Schering Plough).Professor S Ghosh has spoken at educational meetings

supported by Schering Plough, Centocor, Abbott, UCB, Proc-ter& Gamble Pharmaceuticals, Ferring and Falk Pharma, andadvised Schering Plough, Centocor, Abbott, UCB, Shire andFalk Pharma.Lisa Younge has spoken at educational meetings supported

by Ferring, Schering Plough, Abbott and UCB.

References

1. Ghosh S, Mitchell R. Impact of inflammatory bowel disease onquality of life: results of he European Federation of Crohn's andUlcerative Colitis Associations (EFCCA) patient urvey. J Crohn'sColitis 2007;1(1):10–20.

2. Loftus EV, Colombel JF, Panaccione R, et al. Adalimumabsustains qualify-of-life improvements in patients with Crohn'sdisease: 2-year data from CHARM [P078]. Poster abstractpresented at ECCO 2008, Lyon, France.

3. Hanauer SB, Feagan BG, Lichtenstein GR, et al. Maintenanceinfliximab for Crohn's isease: the ACCENT I randomised trial. Lancet2002;359:1541–1549.

4. Moser G. Psychosomatic aspects of bowel diseases. Z PsychosomMed Psychother 2006;52(2):112–126.

Figure 1 Physician and patient domains in the IBD consultation.

3Talking about life and IBD: A paradigm for improving patient–physician communication