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Patients are satisfied with their inflammatory bowel disease medicines: Results of a survey
April 2000
AGAA119
748
750
COMPLEMENTARY THERAPY IN ran PATIENTS: WHO USES IT AND WHY? Louise Langmead, Meenali Chitnis, David S. Rampton, St Bartholomew's and The Royal London Sch of Medicine, London, United Kingdom. Background Complementary therapy (CT) is increasingly used by patients with chronic diseases. We have assessed the use of CT by outpatients with inflammatory bowel disease (IBD) and other gastrointestinal (GI) disorders with a focus on which patients use it and why. In particular, as has been suggested in other diseases such as breast cancer (NEJM 1999; 340: 17339), we assessed whether CT is used more frequently by patients with reduced emotional and psychosocial quality of life scores. Aims To test the relationship between psychosocial and emotional quality of life scores and prevalence of CT usage among IBD patients. Methods 225 consecutive patients, 95 males, attending gastrointestinal (GI) and general medical outpatient clinics answered a written questionnaire about their use of CT. IBD patients also completed a validated, disease-specific quality of life questionnaire (IBDQ, Irvine EJ, Gastroenterology 1994; 106:287-296). Results 26% of all patients used CT. In controls (GI and general medical patients), CT was more commonly used by younger (age<55, 35% users, n=73) than older (age>55, 20% users, n=60, p=O.04) patients. More irritable bowel syndrome (IBS) sufferers (50% users, n=2l, p=0.02) used CT than those with other diagnoses (IBD 26% users, n=92; other GI disorders 30% users, n=76; general medical problems 17% users, n=36). Among IBD patients, no differences were found by age, gender, marital status, ethnicity, diagnosis or duration of symptoms between CT users and non-users. However, IBDQ sub-scores for psychosocial and emotional dimensions were significantly lower (indicating poorer quality of life) in users of CT (4.2 (1.2-6.6), median (range» than non-users (4.7 (2.7-7.0), p= 0.03). Furthermore, the use of CT appeared to be related to poor scores specifically for tiredness (p=0.002), anxiety (p=0.06), and malaise (p=0.06) but not for depression. Conclusions Use of CT is common among GI outpatients, particularly those with IBS. Usage of CT in IBD is related to adverse social and emotional dimensions of quality of life, including, specifically tiredness. Physicians need to be aware of widespread use of CT by their IBD patients and recognise that this may be a marker of psychosocial distress.
INCREASED ASSOCIATION OF LYMPHOMA AND INFLAMMATORY BOWEL DISEASE. Sharon L. Masel, Stephen B. Hanauer, Univ of Chicago, Chicago, IL.
749 PATIENTS ARE SATISFIED WITH THEIR INFLAMMATORY BOWEL DISEASE MEDICINES: RESULTS OF A SURVEY. Parag J. Lodhavia, Samir A. Shah, Brown Univ, Providence, RI. Background & Aims: Inflammatory Bowel Disease(IBD) is a chronic disorder requiring long-term medical treatment. Our aim was to assess how satisfied patients were with their IBD medications and their perspective on the cost versus benefits/side effects. Methods: From a 6 person GI group, 350 patients with known IBD who had been seen within the last 2 years were identified and sent a voluntary questionnaire regarding their experience with IBD medications. The survey was approved by the hospital IRB. Results: 117 of the 350(33%) patients responded. The average age±SD was 50yrs ± 15, M:F was 57:56, and UC:CD was 47:59. 52% of patients had been hospitalized for their IBD, 22% had surgical intervention, and 76% had a history of steroid use. 84% of patients were currently taking medicines for IBD. Of the 113 patients who had health insurance, 17% stated their insurance covered the entire cost of medications, 63% more than half the cost, 14% less than half the cost, and 6% none of the cost. 18% of patients reported the cost of medications was a problem. 40% of patients did not believe their physicians were aware of the cost of medicines, and 71% stated their physicians did not discuss cost versus benefit of different treatment options. 84% of patients were satisfied with the effectiveness of their medicines. 18% of patients reported current side effects, while 52% reported a history of side effects. 95% of patients believe the benefit of their medicines are worth their cost, while 79% believe they are worth the potential side effects. 12% of patients did not take their medicines at the doses prescribed. When asked how often they forgot to take their medicines, 64% statedlIday. The average cost per month per patient on IBD treatment(ineluding alternative therapy) was $57(range $0-$695). An average of $9/ month was spent on sulfasalazine(n=l1), $30/month on oral mesalamine(n=63), $44/month on topical therapy(n=22), $20/month on 6-mp/ azathioprine(n=9), $6/month on prednisone(n=17), $ll/month on antibiotics(n= 11), and $65/month on alternative therapy(n=33). Conclusions: The majority of IBD patients are satisfied with their medicines and believe the benefits outweigh the cost and side effects. However, cost is a problem for a significant minority. Physicians need to discuss the cost versus benefit of different theraputic options available when determining an individual s course of treatment in order to optimize adherence, clinical benefit, and ultimately patient satisfaction.
Background: The risk of developing lymphoma after IBD remains controversial. Both intestinal and extra-intestinal lymphomas have been reported but the relationship and relative-risk attributed to IBD have varied. Aim: To determine the association of Non-Hodgkins Lymphoma (NHL) and Hodgkins Disease (HD) with IBD subtypes and therapy in a large university-based IBD practice. Method: We reviewed the University of Chicago IBD registry for all patients with CD or UC and lymphoma. Records were reviewed to determine site, duration and therapy of IBD as well as type, site and year of diagnosis of lymphoma. Results: Five lymphomas were identified amongst 4791 IBD patients seen at the University of Chicago between 1982 and 1999 giving an estimated incidence of 1041100 000. Two were diagnosed prior to the diagnosis of IBD, all were NHL, and all were extraintestinal. No patient with lymphoma had been treated with immune modulation. Conclusions: In a large tertiary IBD practice the incidence of NHL was increased compared to the US population incidence (104 Vs 15.5 per 100 000) [SEER statistics, National Cancer Institute, 1996]. Lymphomas were unrelated to IBD type, location or therapy and all were extra-intestinal in contrast to some studies suggesting lymphoma occurrence at sites of chronic intestinal inflammation. The lack of association with immune modifying therapy is reassuring and the increased risk may be associated with the underlying disease process itself. Dr S. Masel is funded in 1999 by a scholarship from the University of Western Australia. Additional support from the Reva & David Logan GI Clinical Research Center. Lymphoma Cases case
sex
IBD
1 2 3
m m 1 1 1
CD UC UC UC CD
4 5
I site TI LC LC PanC PanC
lOx
lymph
40 61 31 22 61
NHL NHL NHL NHL NHL
Lsite
lOx
EI EI EI EI EI
39 74 26 49 64
I site=IBD site, TI=terminal ileum, LC=left colon, panC=pancolitis, I Ox=age allBO Ox, Iymph=type oflymphoma, Lsite=site 01 lymphoma, LOx=age atlymphoma Ox
751 POUCHITIS: MICROBIOLOGIC FINDINGS FROM BIOPSY AND FECAL SAMPLES IN NONINFLAMED AND INFLAMED POUCHES. Silja t. Mentula, Juha Kuisma, Martti Farkkila, Hannele r. JousimiesSomer, National Public Health Institute, Helsinki, Finland; helsinki Univ Cent Hosp, Helsinki, Finland. Aim of the study: To determine the bacterial composition in ileal and pouch biopsies and fecal samples from patients with chronically inflamed pouches and subjects with noninflamed pouches and to assess whether the tloras differ according to clinical, endoscopic and histological findings. Patients and methods: 20 patients with chronic pouchitis after IPAA for ulcerative colitis (PDAI2:7, mean 8.6, range 7-11) and 10 control patients with nonintlamed pouches (PDAI 0) were enrolled for the study. Fecal samples were collected prior to endoscopy, 3 tissue samples were obtained from both the neoterminal ileum and the pouch. Biopsy samples were rinsed thoroughly and ground and quantitatively cultured for aerobic and anaerobic bacteria using selective and nonselective media and prolonged incubation. Isolates were identified using established methods. Results: In both groups (pouchitis, nonpouchitis) and in all sample types (ileum, pouch, feces) anaerobic bacteria were significantly dominant over aerobes in terms of concentration (2, 2, 6 fold). The mean number of aerobes/ specimen was elevated (pouchitis: 1.8, 2.9, 6.2 versus nonpouchitis: 1.9, 1.6, 4.3), especially Escherichia coli being far more frequent among patients with pouchitis. The number of anaerobic isolates however was slightly lower among pouchitis group (3.5, 4.0, 6.9 species/ specimen versus 4.5, 6.3, 7.4). The prevalence and relative proportions of Bacteroides fragilis group organisms, particularly Bacteroides thetaiotaomicron in all sample categories were significantly higher in pouchitis group (2, 2, 4 fold). Conclusions: Anaerobic bacteria quantitatively predominate the microbiota in pouchitis and may partly explain the therapeutic effect of metronidatsole in pouchitis. The overall B.fragilis-group load in all sample categories was higher in pouchitis (4,7,8 fold) than in nonpouchitis group, the most marked difference being due to the higher prevalence and concentrations of B.thetaiotaomicron in combination with E.coli.
AGAA119
748
750
COMPLEMENTARY THERAPY IN ran PATIENTS: WHO USES IT AND WHY? Louise Langmead, Meenali Chitnis, David S. Rampton, St Bartholomew's and The Royal London Sch of Medicine, London, United Kingdom. Background Complementary therapy (CT) is increasingly used by patients with chronic diseases. We have assessed the use of CT by outpatients with inflammatory bowel disease (IBD) and other gastrointestinal (GI) disorders with a focus on which patients use it and why. In particular, as has been suggested in other diseases such as breast cancer (NEJM 1999; 340: 17339), we assessed whether CT is used more frequently by patients with reduced emotional and psychosocial quality of life scores. Aims To test the relationship between psychosocial and emotional quality of life scores and prevalence of CT usage among IBD patients. Methods 225 consecutive patients, 95 males, attending gastrointestinal (GI) and general medical outpatient clinics answered a written questionnaire about their use of CT. IBD patients also completed a validated, disease-specific quality of life questionnaire (IBDQ, Irvine EJ, Gastroenterology 1994; 106:287-296). Results 26% of all patients used CT. In controls (GI and general medical patients), CT was more commonly used by younger (age<55, 35% users, n=73) than older (age>55, 20% users, n=60, p=O.04) patients. More irritable bowel syndrome (IBS) sufferers (50% users, n=2l, p=0.02) used CT than those with other diagnoses (IBD 26% users, n=92; other GI disorders 30% users, n=76; general medical problems 17% users, n=36). Among IBD patients, no differences were found by age, gender, marital status, ethnicity, diagnosis or duration of symptoms between CT users and non-users. However, IBDQ sub-scores for psychosocial and emotional dimensions were significantly lower (indicating poorer quality of life) in users of CT (4.2 (1.2-6.6), median (range» than non-users (4.7 (2.7-7.0), p= 0.03). Furthermore, the use of CT appeared to be related to poor scores specifically for tiredness (p=0.002), anxiety (p=0.06), and malaise (p=0.06) but not for depression. Conclusions Use of CT is common among GI outpatients, particularly those with IBS. Usage of CT in IBD is related to adverse social and emotional dimensions of quality of life, including, specifically tiredness. Physicians need to be aware of widespread use of CT by their IBD patients and recognise that this may be a marker of psychosocial distress.
INCREASED ASSOCIATION OF LYMPHOMA AND INFLAMMATORY BOWEL DISEASE. Sharon L. Masel, Stephen B. Hanauer, Univ of Chicago, Chicago, IL.
749 PATIENTS ARE SATISFIED WITH THEIR INFLAMMATORY BOWEL DISEASE MEDICINES: RESULTS OF A SURVEY. Parag J. Lodhavia, Samir A. Shah, Brown Univ, Providence, RI. Background & Aims: Inflammatory Bowel Disease(IBD) is a chronic disorder requiring long-term medical treatment. Our aim was to assess how satisfied patients were with their IBD medications and their perspective on the cost versus benefits/side effects. Methods: From a 6 person GI group, 350 patients with known IBD who had been seen within the last 2 years were identified and sent a voluntary questionnaire regarding their experience with IBD medications. The survey was approved by the hospital IRB. Results: 117 of the 350(33%) patients responded. The average age±SD was 50yrs ± 15, M:F was 57:56, and UC:CD was 47:59. 52% of patients had been hospitalized for their IBD, 22% had surgical intervention, and 76% had a history of steroid use. 84% of patients were currently taking medicines for IBD. Of the 113 patients who had health insurance, 17% stated their insurance covered the entire cost of medications, 63% more than half the cost, 14% less than half the cost, and 6% none of the cost. 18% of patients reported the cost of medications was a problem. 40% of patients did not believe their physicians were aware of the cost of medicines, and 71% stated their physicians did not discuss cost versus benefit of different treatment options. 84% of patients were satisfied with the effectiveness of their medicines. 18% of patients reported current side effects, while 52% reported a history of side effects. 95% of patients believe the benefit of their medicines are worth their cost, while 79% believe they are worth the potential side effects. 12% of patients did not take their medicines at the doses prescribed. When asked how often they forgot to take their medicines, 64% stated
Background: The risk of developing lymphoma after IBD remains controversial. Both intestinal and extra-intestinal lymphomas have been reported but the relationship and relative-risk attributed to IBD have varied. Aim: To determine the association of Non-Hodgkins Lymphoma (NHL) and Hodgkins Disease (HD) with IBD subtypes and therapy in a large university-based IBD practice. Method: We reviewed the University of Chicago IBD registry for all patients with CD or UC and lymphoma. Records were reviewed to determine site, duration and therapy of IBD as well as type, site and year of diagnosis of lymphoma. Results: Five lymphomas were identified amongst 4791 IBD patients seen at the University of Chicago between 1982 and 1999 giving an estimated incidence of 1041100 000. Two were diagnosed prior to the diagnosis of IBD, all were NHL, and all were extraintestinal. No patient with lymphoma had been treated with immune modulation. Conclusions: In a large tertiary IBD practice the incidence of NHL was increased compared to the US population incidence (104 Vs 15.5 per 100 000) [SEER statistics, National Cancer Institute, 1996]. Lymphomas were unrelated to IBD type, location or therapy and all were extra-intestinal in contrast to some studies suggesting lymphoma occurrence at sites of chronic intestinal inflammation. The lack of association with immune modifying therapy is reassuring and the increased risk may be associated with the underlying disease process itself. Dr S. Masel is funded in 1999 by a scholarship from the University of Western Australia. Additional support from the Reva & David Logan GI Clinical Research Center. Lymphoma Cases case
sex
IBD
1 2 3
m m 1 1 1
CD UC UC UC CD
4 5
I site TI LC LC PanC PanC
lOx
lymph
40 61 31 22 61
NHL NHL NHL NHL NHL
Lsite
lOx
EI EI EI EI EI
39 74 26 49 64
I site=IBD site, TI=terminal ileum, LC=left colon, panC=pancolitis, I Ox=age allBO Ox, Iymph=type oflymphoma, Lsite=site 01 lymphoma, LOx=age atlymphoma Ox
751 POUCHITIS: MICROBIOLOGIC FINDINGS FROM BIOPSY AND FECAL SAMPLES IN NONINFLAMED AND INFLAMED POUCHES. Silja t. Mentula, Juha Kuisma, Martti Farkkila, Hannele r. JousimiesSomer, National Public Health Institute, Helsinki, Finland; helsinki Univ Cent Hosp, Helsinki, Finland. Aim of the study: To determine the bacterial composition in ileal and pouch biopsies and fecal samples from patients with chronically inflamed pouches and subjects with noninflamed pouches and to assess whether the tloras differ according to clinical, endoscopic and histological findings. Patients and methods: 20 patients with chronic pouchitis after IPAA for ulcerative colitis (PDAI2:7, mean 8.6, range 7-11) and 10 control patients with nonintlamed pouches (PDAI 0) were enrolled for the study. Fecal samples were collected prior to endoscopy, 3 tissue samples were obtained from both the neoterminal ileum and the pouch. Biopsy samples were rinsed thoroughly and ground and quantitatively cultured for aerobic and anaerobic bacteria using selective and nonselective media and prolonged incubation. Isolates were identified using established methods. Results: In both groups (pouchitis, nonpouchitis) and in all sample types (ileum, pouch, feces) anaerobic bacteria were significantly dominant over aerobes in terms of concentration (2, 2, 6 fold). The mean number of aerobes/ specimen was elevated (pouchitis: 1.8, 2.9, 6.2 versus nonpouchitis: 1.9, 1.6, 4.3), especially Escherichia coli being far more frequent among patients with pouchitis. The number of anaerobic isolates however was slightly lower among pouchitis group (3.5, 4.0, 6.9 species/ specimen versus 4.5, 6.3, 7.4). The prevalence and relative proportions of Bacteroides fragilis group organisms, particularly Bacteroides thetaiotaomicron in all sample categories were significantly higher in pouchitis group (2, 2, 4 fold). Conclusions: Anaerobic bacteria quantitatively predominate the microbiota in pouchitis and may partly explain the therapeutic effect of metronidatsole in pouchitis. The overall B.fragilis-group load in all sample categories was higher in pouchitis (4,7,8 fold) than in nonpouchitis group, the most marked difference being due to the higher prevalence and concentrations of B.thetaiotaomicron in combination with E.coli.