Systematic review of the literature on the quality of life of patients with reconstructive surgery for inflammatory bowel disease

The only curative treatment for ulcerative colitis is proctocolectomy. For this reason, over time, multiple techniques have been studied to obtain the best possible functionality and quality of life, which has being highly affected by the disease. The techniques presented for study are ileoanal anastomosis with pouch and ileostomy, considering at the beginning the pouch as the best technique. Results obtained from the variables studied: fertility is less affected in the ileostomy, sexual function did not present differences, the frequency of bowel movements in the pouch is 6-7 bowel movements per day with an incontinence of approximately 21%, and the economic impact is much more pronounced in the ileostomy, while irritation and pain is much more frequent in the ileostomy. With regard to psychosocial function, there is some variability in the results without a clear difference between the two techniques. With regard to the quality of life assessed by the tests, there is a slight improvement in the pouch compared to the state before the operation. As a conclusion, we can formulate different alternatives, in young women with genetic desire the best option is the ileostomy, while in the rest of the patients, and the ileoanal anastomosis with pouch presents an adequate quality of life

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Building the Case for Quality Improvement.

Great improvements have been made by quality improvement teams. National trends towards using quality and value metrics in reimbursement suggest that physicians and advanced practitioners caring for children and adolescents will benefit from knowing and using quality improvement methods. These methods will also help as transparency of quality data becomes more commonplace.

Effect of threatening life experiences and adverse family relations in ulcerative colitis: analysis using structural equation modeling and comparison with Crohn's disease.

BACKGROUND AND AIMS: We published that threatening life experiences and adverse family relations impact Crohn's disease (CD) adversely. In this study, we examine the influence of these stressors in ulcerative colitis (UC). PATIENTS AND METHODS: Patients completed demography, economic status (ES), the Patient-Simple Clinical Colitis Activity Index (P-SCCAI), the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), the Short-Form Health Survey (SF-36), the Brief Symptom Inventory (BSI), the Family Assessment Device (FAD), and the List of Threatening Life Experiences (LTE). Analysis included multiple linear and quantile regressions and structural equation modeling, comparing CD. RESULTS: UC patients (N=148, age 47.55±16.04 years, 50.6% women) had scores [median (interquartile range)] as follows: SCAAI, 2 (0.3-4.8); FAD, 1.8 (1.3-2.2); LTE, 1.0 (0-2.0); SF-36 Physical Health, 49.4 (36.8-55.1); SF-36 Mental Health, 45 (33.6-54.5); Brief Symptom Inventory-Global Severity Index (GSI), 0.5 (0.2-1.0). SIBDQ was 49.76±14.91. There were significant positive associations for LTE and SCAAI (25, 50, 75% quantiles), FAD and SF-36 Mental Health, FAD and LTE with GSI (50, 75, 90% quantiles), and ES with SF-36 and SIBDQ. The negative associations were as follows: LTE with SF-36 Physical/Mental Health, SIBDQ with FAD and LTE, ES with GSI (all quantiles), and P-SCCAI (75, 90% quantiles). In structural equation modeling analysis, LTE impacted ES negatively and ES impacted GSI negatively; LTE impacted GSI positively and GSI impacted P-SCCAI positively. In a split model, ES had a greater effect on GSI in UC than CD, whereas other path magnitudes were similar. CONCLUSION: Threatening life experiences, adverse family relations, and poor ES make UC patients less healthy both physically and mentally. The impact of ES is worse in UC than CD.

Impact of inflammatory bowel disease on Japanese patients' quality of life: results of a patient questionnaire survey.

BACKGROUND: Inflammatory bowel disease (IBD) has a significant negative impact on quality of life (QOL); however, the direct impact of IBD on several aspects of patients' lives is unknown. The IMPACT survey was conducted in Europe in 2010-2011 to determine this impact. We conducted the IMPACT survey in Japan and compared the results between subgroups of patients with ulcerative colitis (UC) and Crohn's disease (CD). METHODS: The 52-item IMPACT survey questionnaire assessing treatment and the impact of IBD on patients' lives was translated into Japanese and administered to IBD patients recruited through patient advocacy groups. RESULTS: Between June 2013 and January 2014, 172 Japanese IBD patients completed the questionnaire (including 84 UC and 83 CD patients). Half of all patients (84/172, 48.8 %) were satisfied with their treatment plan, and half of those who had undergone surgery were satisfied with the outcome (46/87, 52.9 %). Although 34.9 % (60/172) of patients had not been hospitalized in 5 years, 50.0 % (86/172) had been hospitalized for more than 10 days. During the most recent flare, 49.4 % (85/172) of patients had to reschedule appointments because of IBD. Moreover, 32.0 % (55/172) of patients had to make adjustments such as working part-time or at home to avoid taking sick days; 35.5 % (61/172) of patients felt that they had lost a job because of IBD. CONCLUSIONS: Our survey results indicate that IBD patients' lives and social activities are affected by the deterioration of QOL due to IBD and its symptoms.

A prospective, randomized, controlled, exploratory study of comprehensive dietary advice in ulcerative colitis: impact on disease activity and quality of life.

OBJECTIVES: The impact of food on relapse in ulcerative colitis has not been clearly defined. The aim of this prospective, randomized-controlled study was to evaluate the impact of comprehensive dietary guidelines on the clinical course of the disease and quality of life in patients with ulcerative colitis. MATERIALS AND METHODS: Patients were allocated randomly to an intervention or a control group. Participants in the intervention group were provided dietary guidelines in the form of an educational booklet that was recommended for use for 4-6 weeks during disease flare, that patients eat little and often (four to six times a day), drink adequate fluids, decrease excess intake of fat, decrease simple carbohydrates and decrease high-fibre foods during flare.Validated and study-designed questionnaires were used to compare patients' perceived quality of life, colitis activity scores and eating habits before and following the dietary advice provided. RESULTS: Overall, 112 patients completed the study. Study participants were asked to complete the Inflammatory Bowel Disease Questionnaire and Simple Clinical Colitis Activity Index together with the Food Frequency Questionnaire at 0, 6 and 24 weeks. At 24 weeks, there was a mean reduction in the Simple Clinical Colitis Activity Index score in the intervention group compared with an increase in the score in the control group [-1.304 (P=0.0108) vs. 0.875 (P=0.0249)]. There was a mean increase in the Inflammatory Bowel Disease Questionnaire score in the intervention group compared with a reduction in the score in the control group [7.17 (P=0.126) vs. -3.44 (P=0.205)]. A total of 69% of patients in the intervention group found the dietary advice significantly or moderately helpful. CONCLUSION: The study suggests that there is likely to be a link between the dietary advice provided and symptomatic improvement. The effect of diet may not occur through the addition or the elimination of single nutrients; rather, each food consumed combines many nutrients that allow for a synergistic or an antagonistic action when present in a certain composition.

[The organization of comprehensive rehabilitation of the children presenting with inflammatory intestinal diseases and celiacia under the conditions of a health resort].

In this study we report the experience with the provision of rehabilitative services for the children presenting with long-standing chronic diseases of the digestive organs (ulcerative colitis, Crohn's disease, celiac disease) based at a regional health resort. The possibility of comprehensive rehabilitation was substantiated with the contribution by non-medical specialists including a psychologist, social worker, and educator. A number of organizational problems related to rehabilitation logistics and scientific support have been successfully solved. Standard programs comprising the mechanisms of comprehensive rehabilitation and methods for the evaluation of its effectiveness are proposed.

Unfavourable outcome for women in a study of health-related quality of life, social factors and work disability in Crohn's disease.

OBJECTIVE: The aim was to describe health-related quality of life (HRQL) and social factors, sickness and disability variables in a large population-based cohort of patients with Crohn's disease (CD). METHODS: HRQL was measured with Short Form-36 in 497 adult patients with CD at three outpatient clinics. Comparisons were made with age-sex-matched background population and with ulcerative colitis (UC). Social factors, employment, sickness compensation and disability pension for CD were compared with national population registers. RESULTS: CD had a greater negative effect on HRQL than did UC. This difference was more pronounced for women. Compared with background population, patients with CD had lower educational level, and had a two-fold rise in long-term sickness and disability pension rate. Women with CD had higher rates of sickness and disability than men with CD and were more often living single, though procreation was not affected. CONCLUSION: This study characterized the burden of CD in a large population-based cohort. CD had higher impact on HRQL, compared with UC. Women with CD had worse outcome in subjective health status, but not in objective assessment of disease activity. Women also had higher rates of sickness, disability pension and single living. The mechanism underlying the sex-related inequalities in outcome for CD warrants further elucidation.

The role of self-blame and responsibility in adjustment to inflammatory bowel disease.

OBJECTIVE: S. C. Roesch and B. Weiner's (2001) theoretical model of adjustment to chronic illness was adapted to examine the role of attributions, avoidant coping strategies, and disease severity in the psychological adjustment of people with inflammatory bowel disease (IBD). RESEARCH METHOD AND DESIGN: People with IBD (N = 259) completed an online survey including measures of health-related self-blame and responsibility attributions, disease severity, avoidant coping strategies, and psychological adjustment indexes (coping efficacy, acceptance, and helplessness). RESULTS: Structural equation modeling revealed that avoidant coping mediated the relationship between attributions and psychological adjustment. Attributions of self-blame were directly related to increased avoidant coping, which was in turn associated with poor adjustment. Beliefs about responsibility were associated with decreased use of avoidant coping strategies and subsequently improved psychological adjustment. Higher scores on disease severity were linked to the use of avoidant coping strategies and poor psychological adjustment. CONCLUSIONS: Distinguishing between self-blame and responsibility attributions has important implications for understanding the psychological adjustment of individuals with IBD and may be useful for creating intervention strategies aimed at enhancing the psychological functioning of people with IBD.

Clinical factors that impair health-related quality of life in ulcerative colitis patients vary with the disease duration.

BACKGROUND AND AIM: The health-related quality of life (HRQOL) of patients with ulcerative colitis (UC) can be impaired because of the chronic symptoms. Although UC patients suffer from such symptoms over the long term, there have been few reports on the changes of HRQOL with disease duration. The aim of this study was to clarify these changes. METHODS: The HRQOL of 331 Japanese UC patients was examined using the validated Japanese version of the Inflammatory Bowel Disease Questionnaire (J-IBDQ). HRQOL and factors affecting HRQOL identified using multiple linear regression analysis were stratified by disease duration. RESULTS: Of the 15 clinical factors examined, the clinical activity index score was the strongest determinant (P<0.0001) of all the scores of IBDQ regardless of disease duration. HRQOL did not differ significantly among patients with different disease durations. The factors, however, that affected HRQOL varied according to disease duration. In patients with disease duration of less than 5 years, the clinical activity index score was the predominant factor affecting HRQOL. Being 'on sick leave or hospitalized' was a significant factor impairing HRQOL in patients with disease duration of 5-9 years. Moreover, complications due to corticosteroids significantly impaired all of the IBDQ scores in patients with disease duration of 10 years or more. CONCLUSION: Factors that affected the HRQOL of UC patients varied according to the patients' disease duration. Our findings should assist in the development of a long-term strategy for the treatment of UC patients.

[Incapacity to work, occupational disability and disability in inflammatory bowel disease]. / Arbeitsunfähigkeit, Erwerbsunfähigkeit und Invalidität bei entzündlichen Darmkrankheiten.

Crohn's disease (CD) and ulcerative colitis (UC) are chronic-inflammatory bowel diseases with unknown etiology. The major symptoms in CD are pain and abdominal discomfort, sometimes associated with weight loss and a series of intestinal and/or extraintestinal symptoms. UC, on the other hand, is characterized by diarrhea which can be bloody and lead to iron deficiency anemia. The course of both diseases can be quite variabel: the extent of the disease, the severity and the complications are variable and unpredictable. Many patients have acute flare-ups followed by long phases of remission. Flare-ups can be associated with complications. From the perspective of an insurance, the variable course of disease, the unpredicatable complications and the variable quality of life make it difficult to make valid judgements and predictions. This is partly due to the fact that very little longterm data are available. It is therefore important to generate this information in the next few years.

Course of disease, drug treatment and health-related quality of life in patients with inflammatory bowel disease 5 years after initial diagnosis.

OBJECTIVES: We assessed health-related quality of life (HRQOL) on the basis of a cross-sectional design in a population-based cohort of inflammatory bowel disease patients followed prospectively for 5 years after diagnosis. The aim was to investigate the influence of the course of disease, drug therapy, and relapse pattern on the patients' HRQOL. METHODS: All patients completed the validated Norwegian version of the Inflammatory Bowel Disease Questionnaire (N-IBDQ). We present data from 497 patients, 328 with ulcerative colitis and 169 with Crohn's disease. The mean age was 43.3 years, and 48% were female. RESULTS: Crohn's disease patients treated with systemic steroids or azathioprine had a statistically significant reduction in the N-IBDQ total score compared with non-users. Patients with a more severe disease pattern had a lower N-IBDQ total score. Patients reporting a relapse during the observation period had a significantly lower total score and dimension scores than patients without relapse in both diagnostic groups, and likewise there was a statistically significant decrease in N-IBDQ total score for those with extra-intestinal manifestations compared with those without. A multiple linear regression model showed that the number of relapses during the preceding year in ulcerative colitis, and sex (female gender) in Crohn's disease were the strongest predictor of a reduction in N-IBDQ total score. CONCLUSION: Treatment with systemic steroids or immunosuppressive drugs, a relapsing disease and the presence of extra-intestinal manifestations were associated with a clinically significant reduction in the patients' HRQOL.

Predictors of disease-related concerns and other aspects of health-related quality of life in outpatients with inflammatory bowel disease.

OBJECTIVE: Disease-related concerns are a major dimension of health-related quality of life in inflammatory bowel disease (IBD). The aim of this study was to assess the concerns of IBD patients in an outpatient sample, and to determine the impact of psychological and disease factors on concerns and on other variables of health-related quality of life. METHODS: Seventy-two outpatients with IBD were assessed with regard to disease-related concerns [with the Rating Form of IBD Patients' Concerns (RFIPC)], psychological symptoms and somatic complaints non-specific to IBD as dependent variables. Coping with illness, health locus of control, and disease variables were assessed as predictor variables. Multiple regression analyses determined the independent contribution of each predictor on the dependent variables. RESULTS: Women reported more intense concerns than men. No difference in concerns was found between patients with Crohn's disease and ulcerative colitis. The highest predictive value for the RFIPC total score was found for depressive coping. It explained a greater proportion of variance on the RFIPC total score (23%) than demographic (10%) and disease variables (7%), and comparably impinged on RFIPC subscores. Furthermore, depressive coping was significantly associated with psychological distress, the self-rated health status and somatic complaints non-specific to IBD. CONCLUSIONS: Our findings suggest that in IBD psychological variables, particularly depressive coping, are more predictive than medical variables for disease-related concerns and other variables of health-related quality of life. Further studies are needed to examine the effects that the way of coping with disease have on long-term outcome in IBD.

The influence of demographic and disease-related factors on health-related quality of life in patients with ulcerative colitis.

OBJECTIVE: The aims of this study were to analyse the health-related quality of life of patients with ulcerative colitis and to assess in what way demographic and disease-related factors influence patients' experiences of this, in order to interpret the results of health-related quality of life assessment more correctly. PATIENTS AND METHODS: We carried out a cross-sectional evaluation of 300 consecutive patients with ulcerative colitis from the catchment areas of Linköping University Hospital and Orebro University Hospital in Sweden. Health-related quality of life was measured using four questionnaires: the IBDQ, the RFIPC, the SF-36 and the PGWB. Disease activity was evaluated using a one-week symptom diary, blood tests and rigid sigmoidoscopy. Demographic factors (gender, age, civil status, educational level), disease-related factors (disease duration, disease extent, disease activity) and presence of co-morbidity were obtained. RESULTS: Health-related quality of life was mainly impaired in the psychological and social areas and to a much lesser degree in physical areas. Patients with relapse had significantly more disease-related worries and concerns (the RFIPC), more impaired social functioning (the IBDQ and SF-36), and a lower feeling of well being (the IBDQ, the SF-36 and the PGWB). However, their physical function (SF-36) was no worse than patients in remission. Besides the symptom burden of the current disease, co-morbidity and female gender were associated with a lower health-related quality of life. CONCLUSION: To correctly interpret health-related quality of life assessments, it is necessary to consider co-morbidity and gender distribution in addition to the symptom burden of the disease studied.

A study of the relationships between self-evaluation of physical condition and perception of difficulties of life in ulcerative colitis patients.

This study was conducted to elucidate factors that influence the self-evaluation of physical condition and perception of difficulties of life in ulcerative colitis patients. A survey and clinical examination were carried out in 171 outpatients with ulcerative colitis. Self-evaluation of physical condition was assessed according to a five-grade system. Perception of difficulties of life was assessed using a scale developed by the authors and others. Physical condition of patients was assessed according to their disease state, disease symptoms, and nutritional state. Additional related factors such as mental condition, demographic attributes, and psychosocial states were also investigated. Multiple regression analyses was used to assess the relationships among variables and showed that perception of difficulties of life and disease symptoms were the main explanatory factors for the self-evaluation of physical condition. Perception of difficulties of life was comprised of physical and mental conditions, the latter being further influenced by the patients' psychosocial state.

Objective assessment of quality of life following panproctocolectomy and ileostomy for ulcerative colitis.

A panproctocolectomy and permanent ileostomy improves the quality of life of those suffering from ulcerative colitis. However, it is not known how the quality of life of patients who had this operation compares with that of the general population. The aim of this study was to measure the quality of life of these patients using a reliable and validated instrument, and to determine whether these patients enjoy a similar quality of life to the general population. Forty-nine consecutive patients (31 males and 18 females, median age 49 years), who had a panproctocolectomy with a permanent ileostomy for ulcerative colitis in one of three hospitals in Tayside, UK from 1992-1997, participated in the study. The median number of months (range) post-surgery was 29 (12-72). Participants answered a well-validated generic questionnaire on health-related quality of life: the new SF-36 version 2.0 (SF-36II). The results were then compared with population norms of similar age and gender, derived from the Third Oxford Healthy Lifestyle Survey and published by the Health Services Research Unit of the University of Oxford. The mean score difference between patient and population SF-36II scores (95% confidence intervals) were as follows: physical functioning (PF): -3.9 (-9.4, 1.6); role-physical (RP): -4.1 (-9.9, 1.7); role-emotional (RE): -0.1 (-5.6, 5.4); energy-vitality (EV): 8.2 (2.8-13.6); body pain (BP): 6.6 (0.3, 12.9); social functioning (SF): 3.7 (-2.7, 10.1); mental health (MH): 2.5 (-2.5, 7.5); general health perception (GHP): -1.8 (-7.6, 4.0). Despite the fact that these patients underwent major surgery and have a permanent stoma, their quality of life as measured by the SF-36II was very similar to that of the general population.

Functional outcomes in patients with mucosal ulcerative colitis after ileal pouch-anal anastomosis by the double stapling technique: is there a relation to tissue type?

PURPOSE: The aim of this study was to evaluate any differences in functional outcome in patients with mucosal ulcerative colitis after restorative proctocolectomy and ileal pouch-anal anastomosis with use of the double stapling technique relative to the type of tissue in the stapled doughnut. METHODS: Between September 1988 and June 1997, the pathology of all patients with mucosal ulcerative colitis who underwent ileal pouch-anal anastomosis with use of the double stapling technique were reviewed. Information was obtained regarding the tissue types in the distal tissue rings (doughnuts) obtained from the stapled ileal pouchanal anastomosis. The level of anastomosis was classified according to the type of tissue in the distal doughnut: Group I- patients in whom the anal transitional zone was removed and the distal doughnut included squamous epithelium or transitional epithelium and Group II- patients in whom the anal transitional zone was preserved because the distal doughnut revealed only columnar epithelium. Functional outcomes were assessed and compared by detailed questionnaires mailed to all patients at least one year after ileal pouch-anal anastomosis surgery. RESULTS: Distal doughnuts were obtained from the stapled ileal pouch-anal anastomosis in 222 patients with mucosal ulcerative colitis. Follow-up data at a mean of 38 (range, 12-132) months were obtained in 138 (62.2 percent) patients, including 72 males, with a mean age of 46.9 (range, 13-79) years. Group I consisted of 40 patients (29 percent; 35 (25.4 percent) who had squamous epithelium and 5 (3.6 percent) who had transitional epithelium in the distal tissue rings). Group II consisted of 98 patients (71 percent) with columnar epithelium in the distal tissue rings. Age at diagnosis and operation, duration of disease, length of follow-up, and stage of pouch surgery were similar in the two groups. Incontinence scores, frequency of bowel movement, use of a protective pad, discrimination between gas and stool, use of antidiarrheals, life-style alteration, and patient satisfaction showed similar functional results between the two groups. CONCLUSIONS: The tissue type in the stapler distal doughnut did not greatly influence functional outcome. Failure to identify a relationship may attest to the variable height and composition of the anal transitional zone.

The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease.

OBJECTIVE: The aim of this study was to develop a valid and reliable questionnaire assessing patient knowledge of inflammatory bowel disease (IBD) and its treatment--the Crohn's and Colitis Knowledge (CCKNOW) Score. METHODS: A total of 30 multiple choice questions were constructed into a draft questionnaire. This was piloted on a random selection of participants with differing IBD knowledge levels; junior doctors, nurses, and ward clerks. Factor analysis eliminated questions with poor discriminant ability. The resulting 24-item questionnaire (CCKNOW score) was retested on the three groups, and a Kruskal-Wallis test determined the questionnaire's ability to discriminate between the groups. Reliability and readability were tested using Cronbach's a and the Flesch Kincaid reading score. The validated CCKNOW was then tested on patients from the Leicestershire IBD database. RESULTS: CCKNOW scores differed significantly across the groups of doctors, nurses, and ward clerks (median 22, 16, and five, respectively) T = 40.35, p < 0.0001. The reliability was very good with a Cronbach's alpha of 0.95 and the readability was also high. The median score on the CCKNOW for IBD patients was 10, with no significant difference between ulcerative colitis and Crohn's disease. Patients who are members of NACC (National Association of Crohn's and Colitis) achieve statistically significantly higher scores than do nonmembers (difference in medians 4, 95% confidence interval 4-6, p < 0.0001). CONCLUSIONS: The CCKNOW score provides a valuable index of overall knowledge. It is self-administered and psychometric tests show it to be valid, reliable, and readable. It may be used in the future as a tool to evaluate patient education programs.

Quality of life after pouch excision.

BACKGROUND: Pouch excision is a devastating experience for patients having restorative proctocolectomy for ulcerative colitis. METHODS: The quality of life among patients having pouch excision for ulcerative colitis was compared with that in those having proctocolectomy and ileostomy for ulcerative colitis using a validated standardized self-administered questionnaire. RESULTS: After pouch excision patients (n = 9) had more troublesome bowel symptoms (mainly from liquid stoma output) than those in the proctocolectomy group (n = 14) (mean(s.d.) score 5.64(0.92) versus 6.13(0.37), P = 0.03). However, the mean scores for the other parameters (systemic symptoms, functional, social and emotional impairment) did not differ significantly. CONCLUSION: Patients having pouch excision for ulcerative colitis have more liquid ileostomy loss but a comparable quality of life to those treated by standard proctocolectomy and ileostomy.

Technology assessment using the association between outcome measures and patterns of illness severity.

The inclusion of a patient's illness experience as outcome in the assessment of health care technology has revealed methodological limitations such as the interpretation of multi-attribute scores and lack of knowledge about the association between illness and disease information. In an attempt to overcome these limitations, a cross-sectional study is performed to search for patterns of illness severity and investigate the association between illness measures and between illness patterns and disease factors. A sample of 211 patients with ulcerative colitis is studied using the sickness impact profile (SIP) and the rating form for inflammatory bowel disease patient concerns (RFIPC) as illness measures. SIP and RFIPC scores show low association, suggesting that they provide complementary information about the patient's illness status. Cluster analysis is performed using the two measures of illness separately to identify groups of patients with different degrees of severity of illness (clusters). The cluster description covers illness, disease and social and demographic variables. The RFIPC clusters show a general pattern of ascendant rank scores for the RFIPC items. SIP clusters differ, not only in the level of severity, but also in specific types of disability. The patients in the clusters with the highest degree of disability (reflected by SIP) show a non-linear relationship with patients' concerns (reflected by RFIPC) and disease factors.