Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease

BACKGROUND: This study aimed to study how inflammatory bowel disease (IBD) affects health-related quality of life (HRQoL) during adolescence and to examine how self-esteem influences HRQoL. METHODS: We compared self-esteem, anxiety, and parental reports on behavioral problems in a group of IBD patients to a healthy norm group. Forty children and 38 parents filled out questionnaires separately. Trait anxiety, self-perception, and the data on the Child Behavior Checklist were taken to compare the IBD population with healthy norms, using Student's t tests and 1-sample t tests. Effect sizes were calculated to show the clinical relevance of the differences. Multiple regression analyses were performed to assess the association between disease-related variables and self-perception with HRQoL, anxiety, and problem behavior. RESULTS: The results of this study show that adolescents with IBD, especially boys, have a significantly worse HRQoL and show more internalizing problem behavior compared with healthy peers. An important predictor of HRQoL is self-esteem. CONCLUSIONS: In conclusion, adolescents with IBD are at risk for experiencing problems with their illness. Because self-esteem is an important predictor of HRQoL, it should be taken into account in future interventions for these children.     

Health-related quality of life in patients with inflammatory bowel disease five years after the initial diagnosis

BACKGROUND: Health-related quality of life (HRQOL) has become an important tool in evaluating patient satisfaction in inflammatory bowel disease (IBD). So far, few prospective follow-up studies have been done to identify variables that influence HRQOL. We aimed to identify demographic and clinical variables that influence HRQOL 5 years after diagnosis in patients with ulcerative colitis (UC) or Crohn disease (CD) included in a prospective follow-up study from 1990 to 1994 (the IBSEN study). METHODS: All patients completed the Inflammatory Bowel Disease Questionnaire (IBDQ), a disease-specific quality-of-life questionnaire translated into Norwegian and validated. We present data from 497 patients (328 UC patients and 169 CD patients, mean age 43.3 years, 48% female). The impact of age, gender, smoking, symptom severity, disease distribution, rheumatic symptoms and surgery on IBD patients' HRQOL was analysed. RESULTS: Women had a reduction in IBDQ total score of 10 points compared to men, CD patients had a reduction of 7.5 compared to UC patients. The patients with moderate/severe symptoms had a 50 points lower score than the patients without symptoms. The patients with rheumatic symptoms had a 10 points lower total score than the patients without these symptoms. All differences were statistically significant. The multiple regression analysis showed that symptom severity, rheumatic symptoms and female gender were the strongest predictors of reduction in HRQOL for both diagnosis groups. CONCLUSION: IBD symptoms, rheumatic symptoms and female gender have a significant influence on patients' HRQOL as measured by IBDQ. This was confirmed by the regression analysis.     

Health-related quality of life in inflammatory bowel disease: Psychosocial,clinical, socioeconomic,and demographic predictors

Background and aimsIndividuals with inflammatory bowel disease (IBD) have impaired health-related quality of life (HRQOL). Managing HRQOL is increasingly becoming an important treatment consideration in IBD. Understanding factors that impact HRQOL may facilitate interventions to improve HRQOL and overall IBD management. We hypothesized that psychosocial variables, namely perceived stress, perceived social support, and knowledge, would be associated with HRQOL among individuals with IBD.MethodsA total of 134 adults with IBD were recruited online from IBD support groups. HRQOL was measured using the inflammatory bowel disease questionnaire (IBDQ). Perceived stress, perceived social support, and knowledge of IBD were measured using standardized questionnaires. Clinical and demographic variables were gathered through a 16-item study questionnaire. Univariate analyses were conducted to determine which variables were associated with HRQOL, and those that were statistically significant were entered into a multivariate regression model.ResultsResults from univariate analyses revealed significantly lower HRQOL in individuals who: reported higher perceived stress, higher number of previous hospitalizations and relapses, lower perceived support, lower income, were unemployed, and were female. Multivariate analyses revealed that the variables most strongly associated with HRQOL were perceived stress (p < 0.001), number of previous IBD relapses (p < 0.001), gender (p < 0.001), and perceived social support (p < 0.05).ConclusionIndividuals with IBD who report higher perceived stress, lower perceived social support, greater number of relapses, or are female may be at increased risk for decreased HRQOL. Prospective studies should investigate how interventions addressing these factors may lead to improved HRQOL.     

Impact of inflammatory bowel disease on health-related quality of life

Health-related quality of life (HRQOL) has a recognized importance to evaluate, manage and follow patients. Different types of instruments for measuring HRQOL have recently been introduced to evaluate HRQOL in patients with inflammatory bowel disease. Most questionnaires suggest that inflammatory bowel disease has a significant impact in HRQOL. It seems that ulcerative colitis has less profound effects on HRQOL than Crohn's disease and that some differences in HRQOL status are related to some factors such as the severity of the disease. When patients express their concerns, most important worries are related to surgery. Effective medical treatment appears to improve HRQOL. Effects of surgery on HRQOL can probably be different depending on the type of surgical technique and if it is curative or not. Recent studies suggest that inflammatory bowel disease not only impacts on patient's HRQOL but also on their caregivers. Features such as the impact on HRQOL of different disease variables, such as complications or patient personality, the role of medical or surgical treatments on different dimensions of HRQOL, the cost-utility evaluation of therapy are some of the fields that will probably focus the protagonism in the next years.     

Shortened questionnaire on quality of life for inflammatory bowel disease

Questionnaires for measuring quality of life in patients with inflammatory bowel disease usually include a large number of items and are time-consuming for both administration and interpretation. Our aim was to elaborate and validate a short quality-of-life questionnaire with the most representative items from the Spanish version of the 36-item Inflammatory Bowel Disease Questionnaire (IBDQ-36) using the Rasch analysis. The responses to 311 IBDQ-36 questionnaires from 167 patients with ulcerative colitis (UC) and 144 with Crohn's disease (CD) were analyzed. IBDQ-36 was shortened with successive Rasch analyses until all the remaining items showed acceptable separation and goodness-of-fit properties. Validation of the short questionnaire was studied in a new group of 125 patients by determining its validity and reliability. A 9-item short questionnaire was obtained (IBDQ-9). Its correlation with IBDQ-36 was excellent (r = 0.91). Correlation between IBDQ-9 and clinical indices of activity was statistically significant in UC (r = 0.70) and CD (r= 0.70). IBDQ-9 score discriminates adequately between patients in clinical remission or relapse (P < 0.01). Sensitivity to change was determined in 14 patients who improved clinically, showing significant IBDQ-9 changes between both determinations (P < 0.01), with an effect size of -2.67 in UC and -5.29 in CD. IBDQ-9 was also homogeneous, with a Cronbach's alpha of 0.95 in UC and 0.91 in CD. In 35-clinically stable patients, test-retest reliability was good, with a statistically-significant correlation between both questionnaires (r = 0.76 in UC and 0.86 in CD, P < 0.01) and an intraclass correlation coefficient of 0.82 in UC and 0.84 in CD. In conclusion, a short and valid questionnaire to measure quality of life in patients with inflammatory bowel disease was obtained using a new measurement model. Its use should facilitate comprehension of the impact of inflammatory bowel disease.     

Attachment and quality of life in patients with inflammatory bowel disease

Purpose

Inflammatory bowel diseases (IBD) are chronic disorders affecting psychological well-being, quality of life (QOL), social interactions, and close interpersonal relationships of patients affected. The attachment theory provides a theoretical framework to evaluate the quality of close interpersonal relationships in the context of chronic disorders. The aims of this study were to compare the attachment dimensions between IBD patients and healthy controls and to evaluate the impact of these dimensions on QOL in IBD patients.

Methods

One hundred three consecutive IBD outpatients (70 with Crohn’s disease and 33 with ulcerative colitis) were recruited in the IBD Unit of the University of Bologna. They were clinically evaluated and filled out the questionnaire Short Form health survey-36 (SF-36), assessing QOL, and the attachment style questionnaire (ASQ), assessing attachment dimensions. One hundred three matched healthy subjects filled out the same questionnaires and represented the control group.

Results

IBD patients exhibited worst scores in the QOL measures (both physical and mental health) and in the attachment dimensions Relationships as secondary and Preoccupation with relationships. In IBD, the significant predictors of physical health were disease activity and disease type, while the significant predictors of mental health were disease activity and type, surgery, and the attachment dimensions Confidence and Preoccupation with relationships.

Conclusions

Compared to controls, in IBD patients, the close interpersonal relationships are characterized by attachment insecurity that, in turn, is a significant predictor of QOL. These findings suggest plausible insights for psychological interventions in IBD patients with deterioration in QOL.     

Health-related quality of life and gastrointestinal disease

Society is changing rapidly, and new aspects need to be considered when evaluating treatment of disease. Health-related quality of life (HRQL) is a relatively new addition to the tools clinicians use to gain a better understanding of the impact of disease and its treatment. The questions 'What is it?', 'How it is measured?' and 'How can the information be used?' are now better understood than a few years ago. Generic instruments to capture HRQL enable a broad assessment of a range of aspects and can be used to make comparisons between different patient populations. Irrespective of the choice of instrument, they can classify the influence of different factors, such as gender, age, general health status and disease severity. Health-related quality of life assessments have been made in many areas of gastroenterology, such as reflux disease, inflammatory bowel disease and irritable bowel syndrome, to describe the burden of illness and the impact of treatment. Health-related quality of life as a prediction of treatment response is another interesting option. Its ability in the context of surgical intervention and outcomes is also emerging even though more work must be done in this area. Health-related quality of life evaluations, as an additional tool in the management of patients, are here to stay.     

Providing disease-related information worsens health-related quality of life in inflammatory bowel disease

BACKGROUND: Patients with inflammatory bowel disease (IBD) have identified a need for more information about their disease. PURPOSE: To assess the effect of an educational intervention on health-related quality of life (HRQOL) in patients with IBD. METHODS: Consecutive ambulatory IBD patients were randomized to receive four IBD-specific educational booklets or usual care. Subjects completed two disease-specific HRQOL questionnaires-the Inflammatory Bowel Disease Questionnaire (IBDQ) (range 1-poor to 7-excellent) and the Quality Index in Crohn's and Colitis (QuICC) (range 1-excellent to 5-poor) at entry and after 2 weeks. The mean change in HRQOL scores at follow-up was compared between the education and control groups. RESULTS: 59 subjects participated, with a mean age of 40.0 +/- 11.9 years. 34 were given educational booklets and 25 received standard care. 6 patients (10%) did not complete the study. Mean IBDQ scores became significantly worse in the education group with a change of -0.17 +/- 0.49 compared with controls at +0.28 +/- 0.62 (p = 0.006). This could be explained by worsened disease activity in the education group. There was no significant change in the QuICC scores (p = 0.61). Education group patients who had not received prior educational material had improved mean IBDQ scores of +0.24 +/- 0.47 compared with education patients who had received educational material prior to this study, with a score change of -0.25 +/- 0.46 (p = 0.09). CONCLUSIONS: The addition of educational booklets to IBD patients in a tertiary center does not improve, and may worsen, short-term HRQOL. Education of newly diagnosed or less informed patients should be studied further.     

Instruments for quality of life assessment in patients with inflammatory bowel disease

BACKGROUND: Health-Related Quality of Life is an important measure of illness perception on the part of the patient. In this review, the current status of the Health-Related Quality of Life assessment in studies concerning inflammatory bowel disease is examined and the various instruments proposed for this purpose are considered and compared. METHODS: A search was made of the Medline database, for relevant articles since 1980. Standard criteria were used for including studies for further evaluation. RESULTS: All studies on measuring Health-Related Quality of Life in inflammatory bowel disease patients conclude that the instruments used were valid and reliable assessment tools. Valid instruments that have been proposed for the assessment of health-related quality of life are: the Inflammatory Bowel Disease Questionnaire, the Rating Form of Inflammatory Bowel Disease Patient Concerns, an Inflammatory Bowel Disease-specific questionnaire developed in Cleveland, the Ulcerative colitis and Crohn's disease Health Status Scales and a Disease-specific questionnaire developed in the University of Padova. CONCLUSIONS: Assessing health-related quality of life in inflammatory bowel disease patients is an ever-expanding practice, especially in clinical trials. The instruments that, currently, satisfy most demands for simplicity and validity are the Inflammatory Bowel Disease Questionnaire, reflecting primarily disease activity, and the Rating Form of Inflammatory Bowel Disease Patient Concerns which corresponds more to the psychological and social aspects of inflammatory bowel disease from the patient's point of view.     

Influence of inflammatory bowel disease on different dimensions of quality of life

OBJECTIVE: To establish the impairment of different dimensions of quality of life in inflammatory bowel disease (IBD). DESIGN: Prospective observational study. PARTICIPANTS: 289 patients [160 with ulcerative colitis (UC) and 129 with Crohn's disease (CD)]. MEASURES: Health-related quality of life was assessed by means of the Inflammatory Bowel Disease Questionnaire (IBDQ) and the Psychological General Well Being Index (PGWBI). RESULTS: In active IBD, all dimensions of the quality of life scored significantly lower than in inactive IBD, indicating a poor quality of life. Social impairment was the least impaired dimension of the IBDQ in active UC and CD, compared with digestive and systemic symptoms. In inactive IBD, the systemic symptoms domain received the lowest score (P < 0.01). In a subgroup of 22 patients studied before and after remission, emotional function was the most impaired dimension after achieving remission. The Psychological General Well Being Index was significantly impaired in active UC [78.5 (range 64-89)] and CD [76.5 (range 69-97)] relative inactive IBD [104 (range 93-111)] vs 106 (95-113), respectively; P < 0.05]. CONCLUSIONS: Quality of life is impaired in IBD. During relapse, clinicians should pay attention to digestive symptoms and psychological distress. In remission, they should be sensitive to systemic symptoms.     

炎症性肠病患者健康相关生活质量评价研究

目的 研究炎症性肠病(IBD)患者的健康相关生活质量(HRQoL)及其影响因素.方法 应用中文版IBD问卷(C-IBDQ),对IBD患者进行横断面调查,评价其HRQoL;通过相关分析和多元线性回归分析,筛选出影响IBD患者HRQoL的主要因素.结果 100例IBD患者(UC 80例,CD 17例,未分型3例)完成问卷,HRQoL总分为(175.9±37.9)分,各维度评分均有下降,其中情感功能受损最为明显;UC患者与CD患者HRQoL总分差异无统计学意义(P＞0.05).活动期IBD患者的HRQoL总分及各维度评分均明显低于缓解期患者(158.7±41.4比186.6±35.1;t=2.813,P=0.006);病程＜1年的患者HRQoL明显低于病程1年以上的患者(P＜0.05);重型IBD患者的HRQoL明显低于轻型患者(P＜0.05);医疗费用主要由个人支付的患者HRQoL较费用大部分由医保支付的患者低,两者在社会功能及经济负担维度差异有统计学意义(P＜0.05).多元线性回归分析提示,对IBD患者HRQoL有影响的因素为病情、疾病活动度、病程、付费方式等.结论 IBD患者HRQoL均有不同程度受损;影响IBD患者HRQoL的因素有病情、疾病活动度、病程、付费方式等;经济负担对IBD患者HRQoL有明显影响.     

Physical activity and quality of life of patients with inflammatory bowel disease

This study examined the association between physical activity (PA) and quality of life (QOL) in Korean patients with inflammatory bowel disease (IBD).We enrolled 158 patients with IBD (81 men and 47 women). PA levels were assessed using the International PA questionnaire. Using self-reported frequency (day) and duration (h) of physical activities, the patients were categorized into 3 groups based on their total metabolic equivalent (MET-h/wk) values: least, moderate, and most active. The QOL of patients with IBD was assessed using the inflammatory bowel disease questionnaire (IBDQ), the Medical Outcomes Study 36-Item Short Form Version 2 (SF36v2), the EuroQOL five dimensions questionnaire (EQ5D), and the EuroQOL visual analog scale (EQ-VAS).Of 158 patients, 62, 73, and 23 patients with Crohn disease, ulcerative colitis, and intestinal Behçet disease, respectively, were included. The mean age was 45.96 ± 17.58 years, and 97 (61.4%) patients were men. Higher PA levels correlated with higher EQ5D and EQ-VAS scores (P < .001 and P = .004 respectively). In addition, depending on the type of PA, the amount of leisure activity was associated with higher IBDQ (κ = 0.212, P = .018), physical function of SF36v2 (κ = 0.197, P = .026), EQ5D (κ = 0.255, P = .002), and EQ-VAS (κ = 0.276, P = .001) scores. The frequency of sweat-inducing exercise showed an inverse correlation with IBDQ (κ = –0.228, P = .011), physical function of SF36v2 (κ = –0.245, P = .006), EQ5D (κ = –0.225, P = .007), and EQ-VAS (κ = –0.246, P = .004) scores.Increased PA levels were associated with improved QOL in patients with IBD. More leisure activity and non-sweat-inducing exercise were associated with improved QOL in patients with IBD.     

Health-related quality of life in subjects with functional bowel disorders in Germany

OBJECTIVES: A low health-related quality of life (HRQL) was reported in subjects with functional bowel disorders (FBD). The aim of the present study was to investigate the association between HRQL and FBD within a three year period in a population-based sample in Germany. DESIGN: A panel-study based on an age- and sex-stratified random sample of subjects aged 21 - 80 years in Düsseldorf, Germany (about 500,000 population). METHODS: The presence of FBD, in particular lower abdominal pain, was assessed annually over a three year period using a postal questionnaire. With the last questionning, HRQL was assessed using the Medical Outcome Short Form (SF36) in 305 subjects responding all three questionnaires (49 % males, mean age (SD) 54 (15) years). HRQL was analyzed based on SF36 scores and component summary scores, adjusted for age and sex using regression models. RESULTS: Twenty-eight percent (28 %; 95 % confidence interval 23 - 33 %) of the respondents reported FBD in at least one year of the study period. HRQL was significantly lower in study subjects with FBD in all scores compared to subjects without any FBD during observation time and compared to the German general population. No significant differences between subjects with persistent and those with intermittent FBD could be evaluated. CONCLUSIONS: Subjects with FBD within a three-year period had impaired HRQL compared to subjects without FBD and the general population in Germany. HRQL seemed to be less impaired than in subjects with IBS from the UK and the US.     

Gender and disease activity influence health-related quality of life in inflammatory bowel diseases

BACKGROUND/AIMS: Measurement of health related quality of life (HRQoL) is a new tool to evaluate patients with inflammatory bowel disease (IBD). The aims of this study were to verify reliability and responsiveness of a disease-specific questionnaire [Italian Questionnaire on Quality of Life (IQQoL)], and to assess the relationship between clinical and demographic variables and HRQoL in IBD patients. METHODOLOGY: The IQQoL was submitted to all IBD patients consecutively seen at eight participating Hospitals, and re-administered at follow-up visits. The IQQoL covers intestinal and systemic symptoms, emotional and social function. The higher the score, the worse the HRQoL. RESULTS: 249 patients were enrolled, 106 with Crohn's disease (CD) and 143 with ulcerative colitis (UC). IQQoL was re-administered to 134 patients: 98 with unchanged, 17 with worsened and 19 with improved disease activity. The IQQoL was stable over time in patients with stable clinical conditions, and very responsive to change both in patients with improved and worsened disease activity. HRQoL was inversely correlated with disease activity, both in CD and UC. Perception of HRQoL was significantly worse in women than in men. CONCLUSIONS: The IQQoL is a reliable and responsive instrument to assess HRQoL in IBD patients. Active disease is related to poor HRQoL perception. In CD, women, mainly if young, have a worse HRQoL perception than men.     

Determinants of life satisfaction in inflammatory bowel disease

In patients with Crohn's disease (CD) and ulcerative colitis (UC), medical, sociodemographic, and psychologic "risk and protective" factors for general and health-related life satisfaction (GLS and HRLS, respectively)--defined as preference-based judgments of general and health-related quality of life--have not been studied to date. METHODS: A total of 429 of 868 (49%) outpatients (CD, n = 317; UC, n = 112) attending 3 tertiary care centers and members of the German Crohn's Disease/Ulcerative Colitis Foundation completed the sociodemographic and medical questionnaires of the German "Competence Network Inflammatory Bowel Diseases," the Hospital Anxiety and Depression Scale, and the "Questions on Life Satisfaction(Modules)". Disease activity was assessed by the German Inflammatory Bowel Disease Activity Index. "Questions on Life Satisfaction(Modules)" data were compared with a representative sample of the German general population. RESULTS: GLS and HRLS were reduced compared with the general German population (P < 0.005). Logistic regression showed that mental disorder was a risk factor of reduced GLS in CD [odds-ratio (OR), 2.7; P < 0.01] and UC (OR, 6.3; P < 0.02). Membership in a self-help organization offered no protection against reduced GLS in CD (OR, 0.5; P < 0.02). In CD, psychiatric (OR, 10.4; P < 0.01) and medical comorbidity (OR, 2.0; P < 0.02) and disease activity (OR, 4.0; P < 0.01) were risk factors of reduced HRLS, whereas in UC, only disease activity (OR, 6.6; P < 0.01) predicted reduced HRLS. CONCLUSIONS: To improve GLS and HRLS in inflammatory bowel disease, both the treatment of bowel disease and medical and psychiatric comorbidity are necessary. Strengthening of social support is an additional way to promote GLS.