Patients’ perspective on bowel resection for inflammatory bowel disease

Purpose

The study aimed to determine whether patients are receiving adequate counselling about elective bowel resection and timely surgery for inflammatory bowel disease (IBD).

Methods

Patients with IBD who underwent an elective bowel resection in a tertiary referral centre between April 2012 and Dec 2014 were identified from a prospective database. Patients under the age of 16 years were excluded from the study. Patients were contacted over the phone to complete a questionnaire regarding their perspective on their surgery, including the consultations that took place, preparedness and timing of surgery, as well as patient attitude towards bowel resection and satisfaction with post-operative outcomes. Demographic details were recorded.

Results

Thirty-one patients participated in the study. Twenty-one (68%) patients were diagnosed with Crohn’s disease, nine (29%) were diagnosed with ulcerative colitis, and one (3%) had indeterminate colitis. Twenty-seven (87%) patients reported that the timing of the initial consultation regarding the option of bowel resection was appropriate. Twenty-five (81%) patients felt prepared after a consultation with the surgical team with regard to perioperative issues and potential complications. Fourteen (45%) patients reported that the timing of bowel resection was appropriate, while 15 (48%) reported that it should have been earlier. A significant improvement in patient’s pre- and post-operative attitudes towards bowel resection was demonstrated (p?=?0.004). Thirty (97%) patients were either happy or very happy with their results and symptom improvement post-bowel resection.

Conclusion

Most patients are receiving adequate counselling about elective bowel resection for IBD, although there is room for improvement for preoperative education and optimising timing of surgery.

     

Outcomes and patients’ perspectives of transition from paediatric to adult care in inflammatory bowel disease

AIM: To describe the disease and psychosocialoutcomes of an inflammatory bowel disease(IBD) transition cohort and their perspectives.METHODS: Patients with IBD, aged > 18 years, who had moved from paediatric to adult care within 10 years were identified through IBD databases at three tertiary hospitals. Participants were surveyed regarding demographic and disease specific data and their perspectives on the transition process. Survey response data were compared to contemporaneously recorded information in paediatric service case notes. Data were compared to a similar age cohort who had never received paediatric IBD care and therefore who had not undergone a transition process. RESULTS: There were 81 returned surveys from 46 transition and 35 non-transition patients. No statistically significant differences were found in disease burden, disease outcomes or adult roles and responsibilities between cohorts. Despite a high prevalence of mood disturbance(35%), there was a very low usage(5%) of psychological services in both cohorts. In the transition cohort, knowledge of their transition plan was reported by only 25/46 patients and the majority(54%) felt they were not strongly prepared. A high rate(78%) of discussion about work/study plans was recorded prior to transition, but a near complete absence of discussion regarding sex(8%), and other adult issues was recorded. Both cohorts agreed that their preferred method of future transition practices(of the options offered) was a shared clinic appointment with all key stakeholders. CONCLUSION: Transition did not appear to adversely affect disease or psychosocial outcomes. Current transition care processes could be optimised, with better psychosocial preparation and agreed transition plans.     

Improving quality of care in inflammatory bowel disease: What changes can be made today?

Background and aimsThere are a number of gaps in our current quality of care for patients with inflammatory bowel diseases. This review proposes changes that could be made now to improve inflammatory bowel disease care.MethodsEvidence from the literature and clinical experience are presented that illustrate best practice for improving current quality of care of patients with inflammatory bowel diseases.ResultsBest care for inflammatory bowel disease patients will involve services provided by a multidisciplinary team, ideally delivered at a centre of excellence and founded on current guidelines. Dedicated telephone support lines, virtual clinics and networking may also provide models through which to deliver high-quality, expert integrated patient care. Improved physician–patient collaboration may improve treatment adherence, producing tangible improvements in disease outcomes, and may also allow patients to better understand the benefits and risks of a disease management plan. Coaching programmes and tools that improve patient self-management and empowerment are likely to be supported by payers if these can be shown to reduce long-term disability.ConclusionsHalting disease progression before there is widespread bowel damage and disability are ideal goals of inflammatory bowel disease management. Improving patient–physician communication and supporting patients in their understanding of the evidence base are vital for ensuring patient commitment and involvement in the long-term management of their condition. Furthermore, there is a need to create more centres of excellence and to develop inflammatory bowel disease networks to ensure a consistent level of care across different settings.     

Doctor communication quality and Friends’ attitudes influence complementary medicine use in inflammatory bowel disease

AIM: To examine the frequency of regular complementary and alternative therapy(CAM) use in three Australian cohorts of contrasting care setting and geography, and identify independent attitudinal and psychological predictors of CAM use across all cohorts. METHODS: A cross sectional questionnaire was administered to inflammatory bowel disease(IBD) patients in 3 separate cohorts which differed by geographical region and care setting. Demographics and frequency of regular CAM use were assessed, along with attitudes towards IBD medication and psychological parameters such as anxiety, depression, personality traits and quality of life(QOL), and compared across cohorts. Independent attitudinal and psychological predictors of CAM use were determined using binary logistic regression analysis. RESULTS: In 473 respondents(mean age 50.3 years, 60.2% female) regular CAM use was reported by45.4%, and did not vary between cohorts. Only 54.1%of users disclosed CAM use to their doctor. Independent predictors of CAM use which confirm those reported previously were: covert conventional medication dose reduction(P < 0.001), seeking psychological treatment(P < 0.001), adverse effects of conventional medication(P = 0.043), and higher QOL(P < 0.001).Newly identified predictors were CAM use by family or friends(P < 0.001), dissatisfaction with patient-doctor communication(P < 0.001), and lower depression scores(P < 0.001). CONCLUSION: In addition to previously identified predictors of CAM use, these data show that physician attention to communication and the patient-doctor relationship is important as these factors influence CAM use. Patient reluctance to discuss CAM with physicians may promote greater reliance on social contacts to influence CAM decisions.     

Maintenance of remission with infliximab in inflammatory bowel disease： Efficacy and safety long-term follow-up

AIM To evaluate the safety and efficacy of a longterm therapy with infliximab in Crohn's disease (CD) and ulcerative colitis (UC) patients retrospectively.METHODS The medical charts of 50 patients (40 CD and 10 UC), who received after a loading dose of 3 infliximab infusions scheduled re-treatments every 8 wk as a maintenance protocol, were reviewed.RESULTS Median (range) duration of treatment was 27 (4-64) mo in CD patients and 24.5 (6-46) mo in UC patients. Overall, 32 (80%) CD and 9 (90%) UC patients showed a sustained clinical response or remission throughout the maintenance period. Three CD patients shortened the interval between infusions. Eight (20%) CD patients and 1 UC patient underwent surgery for flare up of disease. Nine out of 29 CD and 4 out of 9 UC patients, who discontinued infliximab scheduled treatment, are still relapse-free after a median of 16 (5-30) and 6.5 (4-16) mo following the last infusion,respectively. Ten CD patients (25%) and 1 UC patient required concomitant steroid therapy during maintenance period, compared to 30 (75%) and 9 (90%) patients at enrolment. Of the 50 patients, 16 (32%) experienced at least 1 adverse event and 3 patients (6%) were diagnosed with cancer during maintenance treatment.CONCLUSION Scheduled infliximab strategy is effective in maintaining long-term clinical remission both in CD and UC and determines a marked steroid sparing effect.Long-lasting remission was observed following infliximab withdrawal.     

DNA methylation in inflammatory bowel disease and beyond

Inflammatory bowel disease(IBD)is a consequence of the complex,dysregulated interplay between genetic predisposition,environmental factors,and microbial composition in the intestine.Despite a great advancement in identifying host-susceptibility genes using genome-wide association studies(GWAS),the majority of IBD cases are still underrepresented.The immediate challenge in post-GWAS era is to identify other causative genetic factors of IBD.DNA methylation has received increasing attention for its mechanistical role in IBD pathogenesis.This stable,yet dynamic DNA modification,can directly affect gene expression that have important implications in IBD development.The alterations in DNA methylation associated with IBD are likely to outset as early as embryogenesis all the way until old-age.In this review,we will discuss the recent advancement in understanding how DNA methylation alterations can contribute to the development of IBD.     

Clinicians’ adherence to international guidelines in the clinical care of adults with inflammatory bowel disease

Background: Although evidence-based guidelines have been developed for inflammatory bowel disease (IBD), the extent to which they are followed is unclear. The objective of this study was to review clinicians’ adherence to international IBD guidelines.

Methods: Retrospective data collection of patients attending a tertiary Australian hospital IBD clinic over a 12-month period. Management practices were audited and compared to ECCO (European Crohn’s and Colitis Organization) guidelines.

Results: Data from 288 patients were collected: 47% (136/288) male; mean age 43; 140/288 (49%) patients had ulcerative colitis (UC); 145/288 (50%) patients had Crohn’s disease (CD); 3/288 (1%) patients had IBD-unclassified (IBD-U). Patient care was undertaken by gastroenterologists, trainees and general practitioners. Disease Management: Overall adherence to disease management guidelines occurred in 204/288 (71%) of patient encounters. Discrepancies between guidelines and management were found in: 25/80 (31%) of patients with UC in remission receiving oral 5-aminosalicyclates (5-ASAs) as maintenance therapy, and; 46/110 (42%) of patients with small bowel and/or ileo-cecal CD receiving 5-ASA. Preventive Care: Adherence to ≥1 additional component of preventive care was observed in 73/288 (25%) of patient encounters: 12/133 (9%) on thiopurines underwent annual skin checks; 61/288 (21%) of patients with IBD underwent a bone scan; 46/288 (16%) patients were reminded to have their influenza vaccine. Psychological care: Assessment of psychological wellbeing was undertaken in only 16/288 (6%) of patients.

Conclusions: There remains a gap between adherence to international guidelines and clinical practice. Standardizing practice using evidence-based clinical pathways may be a strategy towards improving the quality of IBD outpatient management.     

Embracing complexity: what determines quality of life in inflammatory bowel disease?

A subset of patients with inflammatory bowel disease have markedly impaired quality of life. In this issue, Mussell et al. report that patients' self-rated health status and disease-related concerns were determined at least as strongly by their habitual use of depressive coping patterns as by their disease activity. Although past disease severity may have confounded these results, the finding that quality of life is better for patients armed with a positive approach to problem-handling suggests that psychologically oriented interventions could have far-reaching benefits for selected patients. Since evidence is accumulating that stress and distress can worsen tissue inflammation and clinical course in animal models and in clinical populations with inflammatory bowel disease, we may dare to hope that interventions aimed at improving patients' stress tolerance, depressive symptoms, and coping capacities might not only improve perceived quality of life but could potentially decrease bowel inflammation and reduce some patients' need for toxic medications or surgery. Designing, applying, and evaluating such interventions should be a major item on the agenda of psychosomatic medicine in gastroenterology, and biological reductionism should be replaced by the biopsychosocial model.     

Health care for osteoporosis in inflammatory bowel disease: Unmet needs in care of male patients?

Background and aimsOsteoporosis is a frequent complication of inflammatory bowel disease (IBD). It may be related to IBD itself or to its therapy. In this study, the quality of care regarding diagnosis and treatment of osteoporosis was examined.MethodsIn this retrospective, monocentric study 293 consecutive patients with IBD (98 ulcerative colitis, 195 Crohn's disease) were included. Information on age, gender, weight, nicotine abuse, course, disease pattern and medication was assessed, results of dual X-ray absorptiometry (DEXA-scan) were evaluated.ResultsDEXA-scan was performed in 174 patients (59 male, 115 female). Bone mineral density (BMD) was impaired in 38.5% of these patients. Male patients were diagnosed more often with osteopenia or osteoporosis than females (55.9% vs. 29.6%, p = 0.03) and had a risk of bone disease comparable to postmenopausal women. Additionally, duration of corticosteroid treatment and IBD were identified as risk factors for osteoporosis. Follow up DEXA-scan demonstrated an overall deterioration of BMD in patients with normal baseline results.ConclusionsWhile in general, women are considered at higher risk for osteoporosis, male patients had a higher risk of impaired BMD, especially when under treatment with corticosteroids. The high incidence of reduced BMD supports the recommendation to screen patients with IBD at an early stage of disease, although a possible bias has to be considered for patients at a tertial referral centre for IBD. Patients with normal baseline DEXA-scan were still at risk to develop bone disease and it seems advisable to monitor patients with IBD for reduced BMD continually.     

YouTube® and inflammatory bowel disease

Background and aimsNearly half of all patients with inflammatory bowel disease (IBD) use the Internet as a source of information for their disease. We analyzed the source, content and accuracy of IBD videos found on YouTube® – one of the most popular websites in the United States – and assessed the demographic variables of the viewers.MethodsThe 100 most viewed videos with relevant information on IBD were analyzed. We included only English language videos that were less than 20 min in length and primarily focused on IBD. Those with no sound/poor sound quality were excluded. More than 30 variables were analyzed.ResultsAdults of 45–54 years old (95.1%) comprised the most common age group of viewers. Forty-eight percent of videos focused on Crohn's disease (CD), 32.0% on ulcerative colitis (UC), and 20.0% on both. Overall content for patient education was poor. Videos discussing alternative treatment options were more likely to depict patients' personal experience (73.9% vs. 2.4%) (p < 0.001) and be an advertisement compared to patient education videos (78.3% vs. 0) (p < 0.001). Videos discussing patient education had a higher number of favorites (mean 25.0 vs. 5.5) (p < 0.001), comments (mean 22.0 vs. 5.0) (p < 0.022) and “likes” (mean 19.0 vs. 9.0) (p = 0.025) than the ones discussing alternative treatment options.ConclusionsYouTube® videos on IBD are popular but a poor source of patient education. Healthcare providers and professional societies should provide more educational materials using this powerful Internet tool to counteract the misleading information, especially for the targeted age group (45–54 years).     

Granulocyte and monocyte apheresis in inflammatory bowel disease: The patients’ point of view

Background

Granulocyte and monocyte apheresis is the main non-pharmacological treatment for inflammatory bowel disease (IBD), but we do not know how well accepted it is by patients in our setting.

Patients’ real-world experience with inflammatory bowel disease: A cross-sectional survey in tertiary care centres from the GETAID group

BackgroundPatients’ experience with healthcare professionals could influence their clinical outcomes.AimsTo assess inflammatory bowel disease (IBD) patients’ experience with their disease, their treatment and their relationship with their physician.MethodsA one-week cross-sectional study was conducted in 42 IBD centres. 2011 consecutive outpatients with IBD completed an anonymous self-report questionnaire assessing their experience with and knowledge of IBD.ResultsA quantitative assessment of the doctor-patient relationship revealed that patients’ knowledge of IBD and IBD treatment ranged from 7.4 to 8.3 out of 10. In addition to IBD physicians, other sources of information about IBD and current treatment mainly included the internet (80% and 63%, respectively) and general practitioners (61% and 54%). Knowledge about education programmes (28%) was poor, resulting in a lack of willingness to further use these resources (25%). Concerns about IBD treatment were raised in 76% of patients, mostly related to the fear of adverse events (47%) and a lack of efficacy (33%). The need of alternative healthcare professionals was reported by 89% of the sample.ConclusionIn a large cohort of patients, we highlighted gaps in the management of patients with IBD regarding the need for higher-quality information and the implementation of alternative healthcare professionals.     

Sexual function and patients' perceptions in inflammatory bowel disease: a case–control survey

Background

Sexuality is important when assessing quality of life (QoL), which is often disturbed in inflammatory bowel disease (IBD). However, sexuality is not addressed in most QoL questionnaires.

Aims

To evaluate the prevalence and predisposing factors of sexual dysfunction among IBD patients, and their own perception.

Methods

A postal survey was conducted in IBD patients 25–65 years of age from two tertiary centres. Patients were asked to provide a control of the same gender and age without IBD. The questionnaire assessed patient perception of the impact of IBD on their sexuality, and also allowed calculation of the Erectile Function International Index or the Female Sexual Function Index.

Results

A total of 355 patients and 200 controls were available for the final analysis. Both groups were comparable except for a higher proportion of individuals who had been treated for depression among patients. Half of the female and one-third of the male patients considered that both sexual desire and satisfaction worsened after IBD diagnosis. As compared to controls, both men and women with IBD showed significantly lower scores in sexual function indexes, but a higher prevalence of sexual dysfunction was only noticed among women. Independent predictors of sexual dysfunction among IBD patients were the use of corticosteroids in women, and the use of biological agents, depression and diabetes in men.

Conclusions

Sexuality is often disturbed in IBD patients, particularly among women. Many factors seem to contribute to worsened intimacy. Sexuality should be considered when QoL is assessed in these patients.     

What’s new in inflammatory bowel disease in 2008?

Ulcerative colitis and Crohn’s disease represent the two major forms of inflammatory bowel disease. In this highlight topic series of articles we cover the latest developments in genetics and epidemiology, intestinal physiology, mucosal immunology, mechanisms of epithelial cell injury and restitution, current medical therapy, modern surgical management, important extra- intestinal complications such as primary sclerosing cholangitis, cholangiocellular carcinoma and autoimmune hepatitis as well as endoscopic and molecular screening, detection and prevention of small bowel and colorectal cancer.     

Interaction of the major inflammatory bowel disease susceptibility alleles in Crohn’s disease patients

AIM:To investigate the interaction of interleukin-23 receptor(IL23R)(rs1004819 and rs2201841),autophagy-related 16-like 1(ATG16L1)(rs2241880), caspase recruitment domain-containing protein 15 (CARD15)genes,and IBD5 locus in Crohn‘s disease(CD) patients. METHODS:A total of 315 unrelated subjects with CD and 314 healthy controls were genotyped.Interactions and specific genotype combinations of a total of eight variants were tested.The variants of IBD5locus(IGR2198a_1 rs11739135 and IGR2096a_1 rs12521868),CARD...     

Kirsner''''s inflammatory bowel disease

Very few medical textbooks have so thoroughly dominated, and even defined a field, as has Inflammatory Bowel Diseases by Joe Kirsner. Originally co-edited with Roy Shorter of Mayo Clinic, this book, beginning with its first edition in     

Medical management of postoperative complications of inflammatory bowel disease: Pouchitis and crohn’s disease recurrence

Surgical intervention is often required for patients with inflammatory bowel disease. Total proctocolectomy with ileal pouch-anal anastomosis is the surgical treatment of choice for patients with ulcerative colitis. The main long-term complication of this surgery is pouchitis, with 10-year cumulative incidence rates between 24% and 46%. For patients with Crohn’s disease, postoperative recurrence is a significant problem, with clinical recurrence rates as high as 55% at 5 years and 76% at 15 years. Increasing evidence suggests that postoperative medical therapy has the potential to decrease the risk of postoperative Crohn’s disease recurrence.