The Use of Complementary and Alternative Medicine among Patients with Inflammatory Bowel Disease Is Associated with Reduced Health-Related Quality of Life.

Background and Aims. Complementary and alternative medicine (CAM) use among patients with inflammatory bowel disease (IBD) is common. The aim of this study was to explore associations between CAM use and health-related quality of life (HRQoL) as well as identifying whether sociodemographic factors, disease activity, and personal resources (self-efficacy) influence HRQoL scores in users and nonusers of CAM. Methods. Measures included sociodemographic and disease-related data, the International-CAM Questionnaire, and General Self-Efficacy Scale. A univariate analysis of variance was used to assess the association between CAM use and HRQoL. The associations between clinical, demographic, and personal factors and HRQoL were examined through linear regression analyses. Results. CAM users had statistically significant lower SF-36 scores compared to nonusers and the background population. Nonusers scored significantly lower compared to the background population in two out of the eight SF-36 dimensions. Independent of CAM use, disease activity had a negative impact and self-efficacy had a positive impact on HRQoL. Conclusions. HRQoL in CAM users with IBD was significantly lower compared to nonusers and the background population. Independent of CAM use, disease activity was negatively associated with HRQoL. Self-efficacy had a positive impact on the mental health dimensions in both CAM users and nonusers.

Comparison of the Multiattribute Utility Instruments EQ-5D and SF-6D in a Europe-Wide Population-Based Cohort of Patients with Inflammatory Bowel Disease 10 Years after Diagnosis.

Background. The treatment of chronic inflammatory bowel disease (IBD) is costly, and limited resources call for analyses of the cost effectiveness of therapeutic interventions. The present study evaluated the equivalency of the Short Form 6D (SF-6D) and the Euro QoL (EQ-5D), two preference-based HRQoL instruments that are broadly used in cost-effectiveness analyses, in an unselected IBD patient population. Methods. IBD patients from seven European countries were invited to a follow-up visit ten years after their initial diagnosis. Clinical and demographic data were assessed, and the Short Form 36 (SF-36) was employed. Utility scores were obtained by calculating the SF-6D index values from the SF-36 data for comparison with the scores obtained with the EQ-5D questionnaire. Results. The SF-6D and EQ-5D provided good sensitivities for detecting disease activity-dependent utility differences. However, the single-measure intraclass correlation coefficient was 0.58, and the Bland-Altman plot indicated numerous values beyond the limits of agreement. Conclusions. There was poor agreement between the measures retrieved from the EQ-5D and the SF-6D utility instruments. Although both instruments may provide good sensitivity for the detection of disease activity-dependent utility differences, the instruments cannot be used interchangeably. Cost-utility analyses performed with only one utility instrument must be interpreted with caution.

Health-related Quality of Life in Patients with Inflammatory Bowel Disease 20 Years After Diagnosis: Results from the IBSEN Study.

BACKGROUND: Data on the long-term observation of health-related quality of life (HRQoL) in the inflammatory bowel diseases (IBD), Crohn's disease (CD), and ulcerative colitis are scarce. Our aim was to determine HRQoL in a population-based cohort of patients with IBD 20 years after diagnosis and its association with demographic and clinical factors and to compare HRQoL of the cohort with that of the background population. METHODS: Patients with IBD from a large population-based inception cohort (the IBSEN cohort) were invited to a prescheduled 20-year follow-up visit with a structured interview, a clinical examination, and laboratory tests. They completed the Short-Form 36 and the Norwegian Inflammatory Bowel Disease Questionnaire. The association between demographic and clinical factors and HRQoL was assessed with a linear regression analysis. Standardized scores were used to compare HRQoL in patients with that of the background population. RESULTS: Of the still-living patients with IBD, 438 (73.1%) completed the HRQoL questionnaires. There were no differences in HRQoL scores between the patients with ulcerative colitis and those with CD. Women with CD obtained scores lower than those of men and women with CD in the background population. Current symptoms, increased disease activity, and not working were identified as factors associated with reduced HRQoL. CONCLUSIONS: In this population-based IBD cohort, the overall HRQoL scores obtained 20 years after diagnosis were relatively unaffected compared with the background population. However, women with CD had lower HRQoL scores than men with CD and women in the background population. Active disease and not working were the main factors associated with impaired HRQoL scores.

Patients' perceptions of quality of care and follow-up in inflammatory bowel disease.

BACKGROUND AND AIMS: Quality of care (QoC) has gained increased attention in IBD. A better QoC has, historically, been linked to improved treatment outcomes. Even so, factors of equal importance to patients may be quality of life (QoL), patient-physician communication and access to care. Recent surveys suggest that IBD care in Europe is suboptimal. METHODS: Patients were recruited from nine hospitals in the south-eastern and western part of Norway as a part of an observational, multicenter study In addition to clinical and socio-demographic factors; a purposely designed 26 item questionnaire was used to quantify aspects related to IBD care, including QoC. Moreover, the Fatigue Questionnaire (FQ) was used to investigate fatigue. RESULTS: In total, 411 patients were included. Of these, 231 were diagnosed with CD and 180 with UC. Furthermore, 86.1% (354/411) were satisfied with the quality of IBD follow-up and only 4.1% (17/411) were dissatisfied. Most dissatisfaction was related to: lack of focus on personal relations (18.2%), HRQoL (15.1%), general practitioner knowledge of IBD (13.9%), ability to talk about important topics (7.8%), and hospital discharge communication (9.4%). Higher age and longer disease duration was associated with improved QoC scores in both UC and CD. Fatigue was associated with decreased QoC scores in both diagnoses. CONCLUSIONS: Patients are satisfied with quality of care in IBD. However, communication seems to be an important area of improvement - not only related to patient-physician communication, but also to transitional communication between different health-care levels.