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Health-Related Quality of Life and Psychological Distress in a Population-based Sample of Swedish Patients with In� ammatory Bowel Disease
K. Nordin, L. PaÊ hlman, K. Larsson, M. Sundberg-Hjelm & L. LoofDepts. of Public Health and Caring Sciences, Surgery, Medical Sciences, University Hospital,Uppsala, Sweden
Nordin K, PaÊ hlman L, Larsson K, Sundberg-Hjelm M, Loof L. Health-related quality of life andpsychologica l distress in a population-base d sample of Swedish patients with inflammatory boweldisease. Scand J Gastsroentero l 2002;37:450 –457.
Background: The chronicity of in� ammatory bowel disease (IBD) and effects of medical and surgicaltreatments probably affect the daily lives of patients and may thus impair their health-related quality oflife and psychologica l well-being. Methods: Health-related quality of life and psychologica l distresswere investigated in a population-base d Swedish sample of patients with IBD. A total of 492 patients , 331with ulcerative colitis (UC) and 161 with Crohn disease (CD), � lled out the Short Form-36 (SF-36), theIn� ammatory Bowel Disease Questionnair e (IBDQ) and the Hospital Anxiety and Depression (HAD)scale. Results: Patients with UC reported higher (superior ) levels in all dimensions of health-related anddisease-speci � c quality of life than did patients with CD. Conclusions: Having an ileostomy does notseem to affect patients’ quality of life, while having ileoanal anastomosis appears to reduce patients’quality of life in several of the dimensions assessed. CD patients reported more anxiety and depressionthan did patients with UC. The higher psychologica l distress in the CD group could be explained by moresevere symptoms of the disease. Having ileoanal anastomosis may lead to more anxiety and depression,while having an ileostomy does not.
Key words: Anxiety; Crohn disease; depression ; in� ammatory bowel disease; quality of life; ulcerativecolitis
Karin Nordin, Dept. of Public Health and Caring Sciences, Uppsala University, Uppsala Science Park,SE-751 83 Uppsala, Sweden (fax. ‡46 18 506404, e-mail. [email protected] )
In� ammatory bowel disease (IBD), including both Crohndisease (CD) and ulcerative colitis (UC), is a chroniccondition characterized by exacerbations and remis-
sions. Most patients are diagnosed between the ages of 15 and40 years. Common symptoms are recurrent episodes ofabdominal pain, diarrhoea, rectal bleeding and fatigue.Induction of remission and prevention of relapses are oftenmanaged by medical therapies. Almost every CD patient willalso be treated with surgical procedures, and in some apermanent ileostomy is necessary. Among patients with UC,approximately 30% will be operated upon. The standardtreatment today is an ileoanal pouch procedure, although asmall group of patients will have a permanent stoma. Theprevalence of IBD in Western populations appears to haverisen over the past 40 years, at least for CD. The prevalence ofUC is approximately 2 in 1000, and of CD 1 in 1500 (1, 2).
The chronicity of IBD and effects of medical and surgicaltreatments probably affect the daily lives of these patients andmay thus impair their health-related quality of life (HR-QOL). Although there is no consensus about the componentsthat constitute HR-QOL, it is generally accepted that theyinclude physical, social and psychological aspects (3). Studieshave demonstrated an impaired quality of life in patients with
IBD (4, 5). Patients with CD are more affected by theirdisease in terms of quality of life than are patients with UC(6–8).
A distinction can be made between generic and disease-speci� c HR-QOL instruments (9). Generic instruments aredesigned to be acceptable across all diseases, medicalinterventions and populations. One of the most commonlyused generic HR-QOL instruments is the SF-36 (10). Speci� cHR-QOL questionnaires are designed to be relevant to atarget population, e.g. those with a particular disease. Thereare a few disease-speci� c quality of life questionnaires forpatients with IBD (5, 7, 11). One of the most commonly useddisease-speci� c quality of life questionnaires that has beenfound to be valid and reliable in a clinical setting is theIn� ammatory Bowel Disease Questionnaire (IBDQ) devel-oped by Guyatt & Irvine (11, 12).
The relationship between chronic physical conditions andpsychological distress has been documented in communityand clinical studies (13–15). Patients with IBD were found tosuffer from psychological distress to a higher degree thanhealthy controls (6). Patients with CD have elevated levels ofpsychological distress compared with those with UC, andlevels of psychological distress correlate with disease severity
ORIGINAL ARTICLE
Ó 2002 Taylor & Francis
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(6, 16, 17). Addolorato and co-workers (1997) found arelationship between active disease and anxiety and depres-sion. For both diagnoses, patients with an active diseasereported signi� cantly higher levels of anxiety and depressionthan did patients with a stable disease.
The main aim of the present study is to assess health-relatedand disease-speci� c quality of life in a population-basedSwedish sample of patients with CD and UC, and toinvestigate the relationship between health state and psycho-logical distress. The following speci� c research questionswere raised:
1. Are there differences between patients with CD and UCconcerning speci� c aspects of health-related and disease-speci� c quality of life, anxiety and depression?
2. What is the impact of having an ileostomy or an ileoanalanastomosis on health-related and disease-speci� c qualityof life, anxiety and depression?
3. What is the relationship between health states as assessedby health-related and disease-speci� c quality of life andsymptoms of disease severity (i.e. bowel symptoms, illnessduration, physical function, pain) and psychologicaldistress as assessed by measures of anxiety and depression?
Patients and Methods
PatientsPatients (in the age range 18–70 years) with IBD (CD and
UC) who were residents in the county of Uppsala (292,415inhabitants in 1999), Sweden, were invited to participate.They were identi� ed by a registry at the IBD clinic at theUniversity Hospital of Uppsala. The majority of residents in
the county of Uppsala (>90%) with UC or CD attend thisoutpatient clinic. The sample is therefore population-based.The registry contains information about diagnosis anddiagnostic investigations, distribution of in� ammation, timeof diagnosis and previous surgery. In the present study,information about diagnosis, distribution of in� ammation,operation procedures (ileostomy, ileoanal anastomosis, ileor-ectal anastomosis) and disease duration (time since diagnosis)was collected from the register. Remaining demographic datawere reported by patients in a questionnaire (see below).
The demographic and clinical characteristics of patients aresummarized in Table I. The only signi� cant difference(except for distribution of in� ammation) between patientswith CD and UC concerned the number of hospital admis-sions (at medical and surgical wards) during the previous 2years. Patients with CD had been admitted to hospital to agreater extent (t = 2.7; P < 0.01). The disease duration (timesince diagnosis to answering the questionnaire) was signi� -cantly longer in UC patients with ileostomies (m = 23.5)compared to patients with ileoanal anastomosis (m = 18.2,t = 2.7; P < 0.01). Ileoanal anastomosis is not an appropriatesurgical treatment for CD patients.
Study designThe study is based on a self-administered postal ques-
tionnaire mailed to the patients during the period May toAugust, 1999.
Participation and complianceA total of 710 patients (210 with CD, 500 with UC) were
invited to participate and received the questionnaire. Partici-pants who had not returned the questionnaire within 3 weeks
Table I. Demographic and clinical characteristic s of patients
Total (n = 492) UC (n = 331) CD (n = 161)
Age, years (range) 46 (19–70) 46 (20–70) 46 (19–69)Gender (% of females) 54 52 62Illness duration, years (range) 16 (0–48) 16 (0–48) 18 (0–44)Clinical characteristic s
Ileostomy (no. of patients , %) 67 (14%) 42 (13%) 25 (15%)Ileoanal anastomosis (no. of patients,%) 57 (12%) 56 (17%) 1 (0%)Ileorecta l anastomosis (IRA) (no. of patients , %) 19 (4%) 5 (1%) 14 (9%)Surgery (no. of patients, %) 223 (46%) 103 (32%) 120 (77%)No. of operations (mean, range) 2.7 (0–33) 2.4 (0–20) 3.0 (0–33)Hospital admissions (mean during the past 2 years, range) 0.7 (0–7) 0.5 (0–5) 0.9 (0–7)Visits to outpatien t clinics during the past 2 years (range) 2.8 (0–23) 2.9 (0–23) 2.8 (0–10)Relapses (mean during the past 2 years, range) 1.8 (0–20) 1.8 (0–20) 1.6 (0–15)Current relapse (% yes) 58 (13%) 36 (12%) 19 (13%)
Distribution of in� ammation (no. of patients , %)Rectum 32 (6%) 30 (9%) 2 (1%)Left colonic � exure 119 (24%) 113 (34%) 6 (4%)Right colonic � exure (extensive ) 31 (6%) 30 (9%) 1 (0%)Total colitis 185 (38%) 157 (48%) 28 (18%)Segmental colitis 9 (2%) 0 9 (6%)Ileocecal 24 (5%) 0 24 (15%)Small intestine and colon (excluding ileocecal ) 47 (10%) 0 47 (29%)Small intestine 43 (9%) 0 43 (27%)Not registered 2 (0%) 1 (0%) 1 (0%)
Scand J Gastroenterol 2002 (4)
Quality of Life in IBD 451
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were mailed a reminder, resulting in a total of 375 completedquestionnaires. A third reminder resulted in an additional 117questionnaires. A total of 492 patients (70%) participated. Ofthe non-responders, 49 were patients with CD (25% of the CDsample) and 169 were patients with UC (32% of the UCsample). The mean age of the non-responders was 47 years forwomen with CD (n = 24) and 44 years for women with UC(n = 75). The corresponding � gure for men was 44 years forboth CD (n = 26) and UC (n = 88).
MeasuresA questionnaire was used, including standardized measures
of quality of life, anxiety and depression. Demographic dataand disease information were gathered from another ques-tionnaire, and also from the IBD registry.
Health-related quality of life. The Short Form-36 (SF-36) isone of the most widely used generic quality of life instruments(18). It measures HR-QOL using 36 items, divided into 8dimensions. These are physical function (PF), role-physicalfunction (RF), bodily pain (BP), general health perception(GH), vitality (VT), social function (SF), role-emotionalfunction (RE) and mental health (MH). These subscales arescored from 0 (i.e. poorest health) to 100 (i.e. optimal health).The dimensions related to physical health (PF, RP, BP, GH)are summarized in a Physical Component Summary (PCS)score and those related to mental health (VT, SF, RE, MH) ina Mental Component Summary (MCS) score (19). The PCSand MCS raw scores are standardized, resulting in t-scores,with a mean value of 50 and a standard deviation of 10. TheSwedish version of the SF-36 has been validated and
normative data have been presented for the general non-institutionalized adult Swedish population (20).
Disease-speci� c quality of life. The In� ammatory BowelDisease Questionnaire (IBDQ) is a self-report measuredeveloped speci� cally for IBD patients (11). The scaleconsists of 32 items divided into 4 subscales assessing bowelsymptoms (e.g. loose stools, abdominal pain), systemicsymptoms (fatigue, problems with sleep), emotional function-ing (irritability, anger, depression) and social functioning(limited social activity, school or work attendance). Re-sponses are graded on a 7-point Likert scale, with 1 denotingvery severe problems and 7 no problem. A Swedish version ofthe questionnaire has recently been validated (21).
Anxiety and depression. The Hospital Anxiety and Depres-sion (HAD) scale consists of 2 subscales, one assessingdepression (7 items) and one anxiety (7 items). Subscalescores range from 0 (no distress) to 21 (maximum distress)(22). Zigmond & Snaith (1983) suggested a score of 7 or lesson either subscale as indicative of a ‘non case’, 8–10 as a‘doubtful case’ and a score of 11 or more as a ‘case’ of anxietyor depression. The HAD-Scale is well validated for use withsomatic outpatients (22, 23).
Statistical analysisThe Pearson product moment correlation coef� cient was
used to test for relations between variables. Comparisons ofgroup means were performed with unpaired, two-tailed t tests.One sample t test was used for comparisons with norm data.Stepwise regression analyses were performed to determinehow much of the variance in anxiety and depression was
Table II. Health-related (SF-36) and disease-speci � c quality of life (IBDQ), and anxiety and depression (HAD) among patients withulcerative colitis (UC) and Crohn disease (CD)
UC (n = 331) CD (n = 161)
Mean s Mean s t-value
SF-36Physical functioning (PF) 90.8 16.3 85.4 18.8 3.2**Role-physica l (RP) 77.8 36.0 67.0 42.0 2.9**Bodily pain (BP) 79.0 26.1 68.0 29.4 4.2**General health (GH) 64.4 24.0 55.4 25.5 3.7**Vitality (VT) 61.5 25.4 50.9 24.6 4.3**Social functioning (SF) 85.0 23.4 77.3 23.8 3.4**Role-emotional (RE) 81.1 35.1 73.0 39.2 2.2*Mental health (MH) 77.3 20.0 69.7 21.1 3.8**Physical component
Summary score (PCS) 50.0 9.2 46.7 10.7 3.4**Mental component
Summary score (MCS) 46.7 11.9 43.0 12.2 3.1**IBDQ
Bowel symptoms 58.8 9.5 54.1 10.5 4.9**Systemic symptoms 26.8 6.1 24.5 6.3 3.8**Emotional functioning 69.5 11.8 64.4 12.6 4.3**Social functioning 32.6 4.2 31.0 5.2 3.4**
HADAnxiety 5.2 4.3 6.3 4.4 2.6*Depression 3.3 3.2 4.2 3.4 2.9**
** P < 0.01, * P < 0.05.s = standard deviation .
Scand J Gastroenterol 2002 (4)
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explained by age, gender and disease severity (illnessduration, number of relapses during the previous 2 years,current relapse and ‘bowel symptoms’). Comparisons ofquality of life between UC and CD groups were performedusing analysis of covariance controlling for age and gender.Also comparisons of anxiety and depression were performedusing analysis of covariance controlling for age, gender anddisease severity. The analyses were carried out since earlierstudies have demonstrated gender differences in psychologi-cal distress and correlations between age, active disease andpsychological distress (6, 13, 24–26). In some of the statisticalanalyses, patients with ulcerative colitis and a registereddistribution of the in� ammation as extensive colitis (to theright colonic � exure) were classi� ed as total colitis.
Results
Health-related (SF-36) and disease-speci� c (IBDQ) qualityof life
Patients with UC reported signi� cantly higher levels in all
dimensions of health-related and disease-speci� c quality oflife than did patients with CD (Table II). In the analyses ofcovariance controlling for age and gender, all differences inquality of life were replicated except for ‘role emotional’(f = 3.0, P = 0.08). Within the UC group, the only signi� cantdifference in HR-QOL between those with ileostomies(n = 42) and those with ileoanal anastomosis (n = 57) wasfor ‘social functioning’. Patients with ileoanal anastomosisreported poorer function (m = 70.2) than did patients withileostomies (m = 89.3, t = 2.4, P < 0.05). With regard todisease-speci� c quality of life, patients with ileostomiesreported better ‘emotional functioning’ (m = 72.2) than didpatients with ileoanal anastomosis (m = 64.8, t = 2.9,P < 0.01) and fewer ‘bowel symptoms’ (m = 63.0 versus54.4, t = 5.3, P < 0.01). The sample with ileorectal anasto-mosis in the present study is too small to allow comparisons(CD = 14, UC = 5).
In both diagnostic groups, patients with ileostomiesreported similar levels of quality of life as did patientswithout ileostomies. In the UC group, patients with ileostomy
Table III. Health-related quality of life (SF-36) among patients with ulcerative colitis and Crohn disease and norms for the general Swedishpopulation
UC (n = 331) Norms (n = 8930)
Mean s Mean s t-value
SF-36Physical functioning (PF) 90.8 16.3 87.9 19.6 3.0**Role-physica l (RP) 77.8 36.0 83.2 31.8 2.7**Bodily pain (BP) 79.0 26.1 74.8 26.1 2.8**General health (GH) 64.4 24.0 75.8 22.2 8.4**Vitality (VT) 61.5 25.4 68.8 22.8 5.0**Social functioning (SF) 85.0 23.4 88.6 20.3 2.3*Role-emotional (RE) 81.1 35.1 85.7 29.2 2.4*Mental health (MH) 77.3 20.0 80.9 18.9 3.1**
UC (n = 331) Norms (n = 8004)
Physical componentSummary score (PCS) 50.0 9.2 50.3 9.4 0.6
Mental componentSummary score (MCS) 46.7 11.9 50.1 10.1 5.0**
CD (n = 161) Norms (n = 8930)
Mean s Mean s t-value
SF-36Physical functioning (PF) 85.4 18.8 87.9 19.6 1.8Role-physica l (RP) 67.0 42.0 83.2 31.8 4.7**Bodily pain (BP) 68.0 29.4 74.8 26.1 2.9**General health (GH) 55.4 25.5 75.8 22.2 9.8**Vitality (VT) 50.9 24.6 68.8 22.8 8.9**Social functioning (SF) 77.3 23.8 88.6 20.3 5.8**Role-emotional (RE) 73.0 39.2 85.7 29.2 3.9**Mental health (MH) 69.7 21.1 80.9 18.9 6.6**
CD (n = 161) Norms (n = 8004)
Physical componentSummary score (PCS) 46.7 10.8 50.3 9.4 4.0**
Mental componentSummary score (MCS) 43.0 12.3 50.1 10.1 7.1**
** P < 0.01, * P < 0.05.s = standard deviation .
Scand J Gastroenterol 2002 (4)
Quality of Life in IBD 453
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or ileoanal anastomosis are compared with patients withsimilar distribution of the in� ammation (extensive and total)as most of these patients had this distribution before surgery.Patients with ileoanal anastomosis (only UC) reported more‘bowel symptoms’ (t = 3.3, P < 0.01), ‘systemic symptoms’(t = 2.5. P < 0.05), poorer ‘emotional function’ (t = 3.2,P < 0.01) and ‘social functioning’ (t = 2.1, P < 0.05) com-pared to patients without ileoanal anastomosis. They alsoreported lower scores of SF-36 subscales ‘bodily-pain’(t = 2.4, P < 0.05), and ‘mental health’ (t = 2.6, P < 0.05).Patients with an active disease (relapse) within both diag-nostic groups (UC, n = 37; CD, n = 20) reported signi� cantlypoorer quality of life in all dimensions (data not shown).Thus, patients with CD reported lower quality of life than didpatients with UC. Also, having an ileostomy does not seem toaffect patients’ quality of life while having ileoanal anasto-mosis appears to reduce patients’ quality of life in severaldimensions assessed.
The SF-36 data were compared to normative data for thegeneral non-institutionalized adult Swedish population (TableIII). Patients with UC reported higher scores on the subscales‘physical functioning’ (m = 90.8) and ‘bodily pain’ (m = 78.9)compared to the general Swedish population (m = 87.9,P < 0.01, and m = 74.8, P < 0.01, respectively). In all otherSF-36 subscales, the patient groups reported lower levels. Forpatients with CD, there was no signi� cant difference for‘physical functioning’ compared with the normative data. Inall other subscales, the patient group reported lower levels.
Anxiety and depressionMean scores on the HAD scale for the whole group of
patients were 5.6 for anxiety (SD = 4.3) and 3.5 (SD = 3.3) for
depression. CD patients reported signi� cantly higher levels ofboth anxiety (m = 6.3) and depression (m = 4.2) than didpatients with UC (m = 5.2 and 3.3, respectively) (Table II).These differences were replicated in the analysis of covari-ance controlling for gender and age. However, using diseaseseverity (illness duration, number of relapses during theprevious 2 years, current relapse and ‘bowel symptoms’) ascovariates eliminated these differences in anxiety anddepression (anxiety CD m = 5.9 versus UC m = 5.1,F = 0.03, ns; and depression CD m = 4.1 versus UC m = 3.2,F = 0.8, ns). The higher psychological distress in the CDgroup can thus be explained by the fact that they have morecurrent symptoms of their disease. In the regression analyses,41% of the variance in anxiety was explained by bowelsymptoms [ß = 0.18, SE(ß) = 0.02, t = 7.6, P < 0.01] andbowel symptoms explained 43% of the variance in depression[ß = 0.15, SE(ß) = 0.55, t = 8.4, P > 0.01]. Remaining inde-pendent variables tested (age, gender, illness duration,number of relapses, current relapse) did not contributesigni� cantly to the explanation of the variance in anxiety ordepression.
Among patients with UC, those with ileoanal anastomosis(n = 56) reported a higher level of anxiety (m = 6.9) comparedto patients with ileostomies (n = 42) (m = 4.2, t = 2.4,P < 0.05). No difference was found for depression. Therewere no differences in anxiety or depression between patientswith and those without ileostomies in either the CD or UCgroups. Patients (UC) with ileoanal anastomosis (n = 58)reported more anxiety and depression than did patientswithout ileoanal anastomosis (anxiety; m = 6.7 versusm = 4.9, t = 3.0, P < 0.01; depression, m = 4.3 versusm = 3.1, t = 2.5, P < 0.05). CD patients with an active disease(relapse) (n = 20) reported signi� cantly higher anxiety thanthose with a stable disease (m = 8.4; m = 5.8, t = 2.7,P < 0.05). The same was true for depression (m = 6.5 versusm = 3.8, t = 3.3, P < 0.01). There were no differences inanxiety or depression in the UC groups between patients withan active (n = 37) and those with an inactive disease (data notshown). Thus, CD patients reported more anxiety anddepression than did patients with UC. The higher psycho-logical distress in the CD group could be explained by moresymptoms. Having ileoanal anastomosis may lead to moreanxiety and depression.
Using the cut-offs for the anxiety scale, 345 patients (71%)were ‘non-cases’, 67 (14%) ‘doubtful cases’ and 76 (15%)‘cases’. On the depression subscale, 424 (87%) were ‘non-cases’, 43 (9%) ‘doubtful cases’ and 20 (4%) ‘cases’.
Relationships of health-related and disease-related quality oflife to anxiety and depression
All dimensions of health-related and disease-speci� cquality of life correlated signi� cantly with anxiety anddepression (r = ¡0.21 to ¡0.77, P < 0.001). Higher levelsof anxiety and depression were associated with a poorerquality of life (Table IV). Patients who scored as ‘cases’ and/
Table IV. Correlations of health-related (SF-36) and disease-relate dquality of life (IBDQ) to anxiety and depression (HAD) in the totalsample of patients with patients with Crohn disease and ulcerativecolitis
HADanxiety
HADdepression
SF-36Physical functioning (PF) ¡0.25 ¡0.40Role-physical (RP) ¡0.34 ¡0.41Bodily pain (BP) ¡0.40 ¡0.44General health (GH) ¡0.51 ¡0.51Vitality (VT) ¡0.60 ¡0.65Social functioning (SF) ¡0.52 ¡0.62Role-emotiona l (RE) ¡0.53 ¡0.57Mental health (MH) ¡0.77 ¡0.76Physical component
Summary score (PCS) ¡0.21 ¡0.31Mental component
Summary score (MCS) ¡0.72 ¡0.74IBDQ
Bowel symptoms ¡0.44 ¡0.42Systemic symptoms ¡0.58 ¡0.63Emotional functioning ¡0.75 ¡0.75Social functioning ¡0.34 ¡0.46
P < 0.01 for all correlations .
Scand J Gastroenterol 2002 (4)
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or ‘doubtful cases’ for HAD anxiety and depression reportedsigni� cantly lower levels for all of the quality of lifedimensions (Table V).
Discussion
The main aim was to investigate quality of life andpsychological distress in IBD patients. The results suggestthat patients with IBD have a poorer quality of life comparedto the general Swedish population. This is true, particularlyfor the CD group. Patients with CD reported a lower quality oflife and higher levels of psychological distress than those withUC. CD patients reported more anxiety and depression thandid UC patients.
Quality of lifeThe fact that the chronicity of IBD affects patients’ quality
of life has been demonstrated in several studies (27 for areview). Compared to the general Swedish population,patients with IBD in the present study reported poorer HR-QOL as assessed by the SF-36, except for ‘physical function’.Patients with CD reported the same level and patients withUC even higher ‘physical function’ as compared to the normdata. The items included in ‘physical function’ concern theability to manage ordinary daily physical activities such asgoing for a walk, bathing or dressing, and walking up anddown stairs. Thus, these activities are not impaired among theIBD patients in this study in comparison with the generalpopulation. The largest difference was found for ‘generalhealth’, and this was true for both UC and CD patients.‘General health’ included items assessing whether the personconsiders him/herself likely to fall ill more readily than other
people and if they expect their health to get worse. This aspectcould be expected to be in� uenced by chronic disease. Welchand co-workers (1995) used the SF-36 in a group of IBDpatients compared with aged-matched general populationcontrols. In this study, the IBD patients scored poorer on‘vitality’, ‘general health’ and psychosocial subscales. Therewas a trend that CD patients scored poorer than UC patients inall dimensions. Also, Farmer and co-workers (7) found thatpatients with UC had better quality of life than those with CD.These results are in line with the present � ndings but wedemonstrated differences in more dimensions of quality oflife.
For disease-speci� c quality of life (IBDQ), patients withUC had higher scores than those with CD. The IBDQ has notbeen validated in Sweden, but it has in several other countries(12, 28–30). The design of the present study does not allowregular validation of the questionnaire. However, the resultsindicate that the scale is useful for assessment of disease-related quality of life in Swedish IBD patients. The emotionalsubscale correlates strongly with anxiety and depression asassessed by the HAD scale, and the physical subscalescorrelate strongly with comparable subscales of the SF-36(data not shown). Also, there were differences in disease-related quality of life between patients with an active diseaseand those with a stable disease. This sensitivity to clinicaldifferences indicates good discriminant validity.
The majority of CD patients will be treated with surgicalprocedures, and in some a permanent ileostomy is necessary.Among patients with UC, approximately 30% will beoperated with an ileoanal anastomosis procedure or apermanent stoma. In both diagnostic groups, patients withan ileostomy reported the same levels of quality of life as the
Table V. Mean values for health-relate d quality of life (SF-36) and disease-relate d quality of life (IBDQ) for patients who scored as non-cases or cases/doubtful cases for HAD anxiety and depression
HAD anxiety HAD depression
Non-case(n = 343)
Case/doubtful(n = 142) t-value Non-case (422)
Case/doubtful(63) t-value
SF-36Physical functioning (PF) 90.9 84.3 3.8** 91.3 73.8 7.9**Role-physical (RP) 81.0 58.3 6.1** 79.2 42.1 7.6**Bodily pain (BP) 81.2 61.3 7.6** 79.2 50.1 8.3**General health (GH) 68.6 44.2 11.0** 64.9 38.2 8.5**Vitality (VT) 65.7 39.6 11.5** 62.8 26.1 12.1**Social functioning (SF) 89.1 65.8 10.9** 86.9 51.0 13.0**Role-emotiona l (RE) 88.9 53.1 10.8** 85.7 29.5 13.0**Mental health (MH) 83.1 54.3 18.1** 79.4 42.8 16.3**Physical component
Summary score (PCS) 50.1 46.3 3.8** 49.9 43.1 5.2**Mental component
Summary score (MCS) 50.2 34.0 16.6** 48.3 26.8 16.3**IBDQ
Bowel symptoms 59.8 51.3 9.1** 58.6 49.1 7.3**Systemic symptoms 28.1 21.3 12.5** 27.2 18.2 12.3**Emotional functioning 72.9 55.2 19.3** 70.4 50.3 14.5**Social functioning 33.1 29.7 7.9** 32.7 27.7 8.8**
** P < 0.01, * P < 0.05.
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patients without a stoma. The UC patients with ileostomywere compared with patients without ileostomy and withextensive or total colitis. The CD patients with an ileostomywere compared with those who were not operated on. Incomparisons between patients with an ileostomy and ileoanalanastomosis, stoma patients reported better physical function,emotional function and fewer bowel symptoms. Some of theitems in the subscale ‘bowel function’ may not be relevant forthe patients with an ileostomy (frequent stools, loose stools)but most are. Having a stoma does not therefore appear toaffect quality of life, while having ileoanal anastomosis seemsto do so. The sample of patients with ileorectal anastomosis inthe present study is too small to allow comparisons (CD = 14,UC = 5).
Anxiety and depressionCD patients reported more anxiety and depression than did
UC patients. The higher levels of psychological distress in CDpatients appear to be related to the severity of diseasesymptoms. In the analysis of covariance, adjusting forsymptom severity, the differences in anxiety and depressionbetween CD and UC patients did not remain. The higheranxiety and depression scores in the CD group can thus beexplained by more severe physical symptoms. In a survey of997 persons with IBD from the Crohn and Colitis Foundationof America, patients with CD had more psychosocialdif� culties mainly due to greater symptom severity (6). Inthe present regression analyses, ‘bowel function’ explained asigni� cant amount of the variance in anxiety and depression.This � nding strengthens the assumption that anxiety anddepression are related to symptom severity. Also, highcorrelations were found between HAD anxiety/depressionand all dimensions of health-related and disease-relatedquality of life. These results illustrate the importance ofcontrolling and minimizing the symptoms of the disease inorder to reduce both physical and psychological suffering.
As for quality of life, patients with ileoanal anastomosisseem to be more affected also in terms of anxiety than arepatients with an ileostomy. Patients with an ileostomy did notreport higher levels of anxiety or depression compared topatients without an ileostomy or ileoanal anastomosis, whilepatients with ileoanal anastomosis did. There are some long-term complications of an ileostomy such as skin problems andintestinal obstruction (1). However, this surgical option is‘simple’ and requires only one operation. Having ileoanalanastomosis often means that the patients will have to gothrough several surgical operations. Complications afterpouch surgery such as fecal incontinence or pouchitis andurgency are side effects that may cause anxiety, especially insocial situations.
The population-based sample and the high response rate inthe present study strengthen the � ndings and allow general-izations to other IBD patient groups.
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Received 3 April 2001Accepted 19 September 2001
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