NHS Trust Boards and Health and Well-being Boards: Do they play any role in the management of disparate levels of care for South Asian patients with Inflammatory Bowel Disease?

Aims: There is evidence of disparate levels of care for members of ethnic minority communities with inflammatory bowel disease in various NHS Trusts and Health Boards in England and Scotland. The purpose of this study was to investigate whether there was any association between the existence of disparate levels of care and the ethnic composition of the management boards of NHS Trusts and Health Boards. It also examined the ethnic composition of Health and Wellbeing Boards associated with these Trusts in England. Method: NHS Trusts in England and Health Boards in Scotland, which had been involved in previous studies of disparate levels of care, were identified through a review of the relevant published papers. Health and Wellbeing Boards associated with these Trusts were then identified. Executive and non-executive membership of the NHS Trust, Health Boards and Health and Wellbeing Boards was determined through scrutiny of their web pages. Results: The proportion of Asians, who were executive officers, was significantly lower than the proportion who were non-executive board members both for trusts who offered disparate care (z = 2.22; p < 0.03) and those which did not (z = 2.24; p < 0.03). There was no significant difference in the proportion of Asians who were non-executive board members between the two types of trust. The proportion of ethnic minority members of English Health and Well-Being Boards, where there was evidence of disparate levels of care received by South Asian patients was significantly greater than on Boards where this was not the case. (z = 2.8. p < 0.005). Conclusions: The relation of these findings to disparate levels of care is unclear. However, it may point to a culture of tokenism, where either the members are not truly representative of underserved communities or they are unable to have any influence on local policy decisions. In either case there is an urgent need to develop better links with minority communities who are underserved so that issues can be effectively identified and remedied.

Khan v Meadows [2021] UKSC 21 and its potential impact on clinical negligence cases.

Khan v Meadows, which was decided recently by the Supreme Court, will have a profound effect on day-to-day clinical practice and future clinical negligence cases. It has clarified the scope of duty of care and to a significant extent links it to the questions being asked by patients of their doctors and by doctors of their colleagues. Will courts now consider that when a patient consults a doctor, he or she is seeking an answer to a specific question or a more general question hidden within that specific question? Clearly the onus will be on clinicians to define exactly what is wanted by the patient or by a colleague.

Apparent discrimination in the provision of biologic therapy to patients with Crohn's disease according to ethnicity.

OBJECTIVES: The objective of the study was to investigate whether patients from a South Asian ethnic background who had Crohn's disease received equivalent access to therapy with biologics compared to patients with an English background. STUDY DESIGN: The study was retrospective and covered the period 2008 to 2012. It was based on a register of all patients with Crohn's disease in Leicestershire who are treated with biologics. The prevalence of Crohn's disease in Leicestershire amongst South Asian and English patients was known from earlier studies and from these data it was possible to make corrections to allow for the difference in frequency of the condition between the two communities. METHODS: All adult patients who received biologics for treatment of Crohn's disease in Leicestershire between 2008 and 2012 were reviewed and their gender and ethnicity noted as well as whether they had received infliximab or adalumimab. The expected numbers of patients who should have received these therapies were calculated in two ways: RESULTS: One hundred and twenty six patients with Crohn's disease who received treatment with biologics were European and 13 South Asian. The patients' gender was also noted and 67 European patients (53%) were female as were six Asians (46%). Based on prevalence data, the expected distribution of the treatment would have been for 97 of the patients to have been European and 42 to have been South Asian. If 126 European patients warranted treatment, on this basis the expected number of South Asian patients in need of biologic therapy would have been 55. Based on the smaller predicted number of South Asian patients (42) the difference is significant at P < 0.0001 [Proportion difference=0.69 (95% confidence interval=0.539278-0.809576]. For the difference to be extinguished the number of English patients who should have received biologic therapy would have been as low as between 30 and 39 cases (based on the calculated proportion of 97 and the actual figure of 126 European patients respectively). Based on a population composition, rather than prevalence data, in which 24% of the Leicester community should have been of South Asian origin, 33 patients would have received biologics compared with 92 patients of English origin (66%). This is significantly different to the 13 patients who did receive treatment (z=-3.2, P < 0.001). CONCLUSIONS: Suggested reasons for these differences have included concerns about the animal origins of infliximab as well as difficulties associated with accessing the service, such as the provision of information in an appropriate language through appropriate media. For those who come from groups with significant social deprivation there is often a readiness to accept more limited clinical services. However, such differences themselves, are examples of discrimination in clinical practice.

Microscopic colitis: a review.

AIM: In recent years, microscopic colitis has been increasingly diagnosed. This review was carried out to evaluate demographic factors for microscopic colitis and to perform a systematic assessment of available treatment options. METHOD: Relevant publications up to December 2013 were identified following searches of PubMed and Google Scholar using the key words 'microscopic colitis', 'collagenous colitis' and 'lymphocytic colitis'. Two-hundred and forty-eight articles were identified. RESULTS: The term microscopic colitis includes lymphocytic colitis and collagenous colitis. Both have common clinical symptoms but are well defined histopathologically. The clinical course is usually benign, but serious complications, including death, may occur. A peak incidence from 60 to 70 years of age with a female preponderance is observed. Although most cases are idiopathic, associations with autoimmune disorders, such as coeliac disease and hypothyroidism, as well as with exposure to nonsteroidal anti-inflammatory drugs and proton-pump inhibitors, have been observed. The incidence and prevalence of microscopic colitis is rising and good-quality epidemiological research is needed. Treatment is currently largely based on anecdotal evidence and on results from limited clinical trials of budesonide. Long-term follow-up of these patients is not well established. CONCLUSION: The review synthesizes work on the definition of microscopic colitis and the relationship between collagenous and lymphocytic colitis. It reviews the international epidemiology and work on aetiology. In addition, it critically considers the efficacy of a range of treatments.

The development of medical education in Eastern Europe during the 20th century and the emergence of 'English parallel' courses.

This paper will explore the development of medical education in the Soviet Union, its underlying principles and the subsequent migration of this format into the countries of the Soviet Bloc following World War II. The impact of Perestroika and the collapse of the Warsaw Pact on university training and medical education in particular will be reviewed. The need for external funding as a factor in the emergence of English Parallel courses in Hungary, Czechoslovakia and subsequently in other countries will also be considered.

NICE clinical guideline (CG152): the management of Crohn's disease in adults, children and young people.

BACKGROUND: The guideline offers best practice advice on the care of adults, children and young people with Crohn's disease. AIM: To provide clinically effective and cost-effective evidence-based recommendations to guide clinical practice in a clinical guideline commissioned by the National Institute for Health and Clinical Excellence (NICE). METHODS: A systematic review of the evidence including critical appraisal, meta-analysis and cost-effectiveness modelling. RESULTS: Thirty-one evidence-based recommendations covering induction and maintenance therapy are available. Five key priorities for implementation are identified together with nine future research recommendations. Three guideline versions are available: short (containing just the recommendations), full (containing the full evidence base) and an Understanding NICE guidance for patients and carers. Algorithms have been produced together with a NICE pathway and implementation tools. CONCLUSION: These are the first evidence-based clinical and cost-effectiveness guidelines for Crohn's disease in the United Kingdom.

An investigation of medication adherence to 5-aminosalicylic acid therapy in patients with ulcerative colitis, using self-report and urinary drug excretion measurements.

BACKGROUND: Non-adherence to 5-aminosalicylic acid (5-ASA) medication can limit the established benefits of this therapy in ulcerative colitis (UC). AIM: To determine rates and predictors of non-adherence to 5-ASA therapy in UC patients. METHODS: Medication adherence was assessed using self-report data and urinary drug excretion measurements. Participants completed a study-specific questionnaire and two validated questionnaires: Beliefs about Medicine Questionnaire (BMQ)-Specific and Satisfaction with Information about Medicines Scale. RESULTS: A total of 169 participants provided self-report adherence data; 151 also provided urine samples. Adherence rates were 111/151 (68%) according to self-report and 90/151 (60%) according to urine analysis, but the two measures were not correlated (chi(2) = 0.12, P = 0.725). Logistic regression identified a significant association between self-reported non-adherence and younger age [odds ratio (OR) for increased age 0.954, 95% confidence interval (CI) 0.932-0.976] and also doubts about personal need for medication (OR for BMQ - Specific Necessity scores 0.578, 95% CI 0.366-0.913). For non-adherence based on urine analysis, only South Asian ethnicity was independently associated with non-adherence (OR 2.940, 95% CI 1.303-6.638). CONCLUSIONS: Our observations confirm the difficulty of accurately assessing medication adherence. Nonmodifiable (younger age, South Asian ethnicity) and potentially modifiable (medication beliefs) predictors of non-adherence were identified.

Co-prescribing azathiopurine or 6-mercaptopurine and 5-aminosalicylate compounds in ulcerative colitis.

BACKGROUND: A total of 254 senior consultant gastroenterologists with valid e-mail addresses were identified from the membership list of the British Society of Gastroenterology (BSG) 2007. METHODS: They were sent by e-mail a questionnaire which dealt with aspects of clinical practice and addressed cancer prevention in ulcerative colitis (UC). Replies were received from 97 clinicians (38% response rate). RESULTS: Ninety-one (94%) advised patients with established UC to take 5-aminosalicylate (5-ASA) compounds for life. Seventy-two of the 91 (79%) clinicians co-prescribed 5-ASA compounds with immune modulators for patients with UC. Only 3 clinicians advised patients to take folic acid as a daily supplement. A median of 20% (interquartile range 10%-50%) of their patients with UC were co-prescribed a 5-ASA compound and azathioprine or 6-mercaptopurine. Of these, a median of 3.5% (interquartile 1%-5%) developed neutropenia. CONCLUSIONS: Future research needs to be directed at the long-term maintenance treatment and to address questions about which drugs should be used, in what combinations, and with what frequencies.

A re-appraisal of lactose intolerance.

BACKGROUND: Lactose, beta-galactose-1,4-glucose, is hydrolysed by the enzyme lactase. Lactose intolerance occurs when lactase deficiency causes clinical symptoms. AIMS: To provide an overview of lactose intolerance, including definition, aetiology and epidemiology, the clinical symptoms and diagnostic testing and management. METHODS: A literature review was carried out to meet the aims of this paper. This resulted in the analysis of a database of patients tested for lactose intolerance to provide examples of the consequences of problems of terminology identified. CONCLUSIONS: The terminology relating to lactose intolerance is confusing for clinicians and researchers. Clinicians need to ensure that these problematic terms do not cause diagnostic mistakes and inappropriate treatment. Researchers should be aware of inconsistent terminology in studies and resultant problems with the interpretation of results.

The role of an information sheet in patient led decision making about sedation and anaesthesia during gastroscopy.

INTRODUCTION: The need for patients to be informed about their disease and its management is now widely recognised, as well as their right to make decisions, which might conflict with the views of their clinicians. There remains a need for the clinician to ensure that patients are provided with accurate evidence-based information. This should be in a form which can be readily understood, retained and acted upon. In order to identify patients' views and to establish evidence of this process there is a need to develop decision trees, which demonstrate their active involvement. AIMS AND METHODS: A short text was designed to outline choices available to patients who were to undergo a gastroscopy. Its purpose was to describe the forms of sedation available and provide information which would allow patients to make an informed choice. The design was such that choices were to be made by patients in an active way and recorded on a document signed by the patient. RESULTS: 97 successive patients completed the choices on an information sheet allowing them to select the nature of their sedation and oral preparation for the procedure. Of these 13 were of South Asian origin and 44 women. 91% of patients wanted some form of sedation or oral anaesthesia. Most (45%) chose lidocaine spray alone, although 5% wished the procedure to be done under a general anaesthetic. 26% of patients wanted the endoscopist to make choices. CONCLUSIONS: In summary, patient choice should include the form of sedation or topical anaesthesia in endoscopic practice. The development of a decision tree is an effective way of providing information and recording a patient's choice.

Duration of treatment with 5-aminosalicylic acid compounds.

The development of 5-aminosalicylic acid (5-ASA) therapy as a life long treatment for ulcerative colitis is reviewed from its origins in the 1940s to the present day. The drug was designed to treat rheumatoid arthritis, but was found helpful in the management of nine patients with ulcerative colitis. This discovery preceded the emergence of the clinical trial as a tool for assessing a new drug's efficacy; as a result it lacked scientific rigour and was selective in its presentation of results. Nevertheless it identified the future cornerstone of therapy in ulcerative colitis. In 1962, the first double blind controlled trial of sulphasalazine was conducted on 40 patients. Outcome measures were subjective and included symptoms and an assessment of the rectal mucosa. In 1973, the first two papers on the role of sulphasalazine in maintenance of remission were published. Both used placebo controls and had a stratified design. Outcomes were measured using "an intention to treat" approach. The British study of 64 patients used both subjective and objective criteria to assess outcomes. Patients on placebo had a relapse rate four times patients on active treatment and this founded the basis for a life long approach to therapy with 5-ASA compounds in ulcerative colitis. However, in 1985, a small "on demand" study of 32 patients suggested this approach might be as effective as continuous treatment. Some support for this view came from an Italian study which showed no benefit to continued treatment for those in remission for two years or more. The central problem these studies identify is that of adherence to treatment in the long-term. Few studies have considered patients' attitudes to continuous therapy and it is an area that needs further investigation.

Meta-analysis: mortality in Crohn's disease.

AIM: To perform a meta-analysis is of published literature reporting standardized mortality ratios (SMR) for Crohn's patients from 1970 to date. METHODS: Medline search identified relevant papers. Exploding references identified additional papers. When two papers reviewed mortality of one patient group at different times, the later publication was used. RESULTS: Of 13 papers identified, three studies reported SMR below 1.0, two others had confidence intervals including 1.0. All other studies reported mortality higher than the general population. Meta-analysis using a random effects model shows the pooled estimate for SMR in Crohn's disease is 1.52 (95% CI: 1.32 to 1.74 [P < 0.0001]). Meta-regression shows the SMR for these patients has decreased slightly over the past 30 years, but this decrease is not statistically significant (P = 0.08). CONCLUSION: Assessing evidence from original studies and conducting a meta-analysis shows age-adjusted mortality risk from Crohn's disease is over 50% greater than the general population. Whilst mortality has improved since the condition was first recognized, further evaluation of the patients studied in the cohorts included here is necessary to assess more recent changes in clinical practice.

Views of specialist registrars on specialty care in the community: employment prospects and the need for additional training.

AIM: To obtain the views of specialist registrars on specialty care in the community. METHOD: Specialist registrars from five Deaneries in England completed an online questionnaire about their views on employment prospects, the role of specialty care in the community, and the need for additional training in this area. RESULTS: One hundred and twenty seven replies were received over a four week period. Thirty (24%) viewed their future employment prospects as consultants as poor or very worrying. Seventy seven (61%) specialist registrars considered that as consultants they will need to work directly in the community. Thirty nine of these (51%) considered the need to work close to patients directly in the community as either a "bad" or "very bad" development. However, 102 (80%) specialist registrars believed that they should receive training on the delivery of specialty care in the community and 96 (76%) wanted this in the form of a university based degree.

Meta-analysis: cancer risk of low-grade dysplasia in chronic ulcerative colitis.

BACKGROUND: The cancer risk of low-grade dysplasia (LGD) in chronic ulcerative colitis is variable and its management remain contentious. AIM: To determine the risk of cancer or any advanced lesion once LGD is diagnosed. METHODS: A MEDLINE, EMBASE and Pub Med search was conducted using the key words 'surveillance', 'colorectal cancer', 'low-grade dysplasia' and 'ulcerative colitis'. A random effects model of meta-analysis was used. RESULTS: Twenty surveillance studies had 508 flat LGD or LGD with dysplasia-associated lesion or mass. An average of 4.3 colonoscopies was performed/patient post-LGD diagnosis (range: 3-7.6). An average of 18 biopsies taken per colonoscopy (range: 9-24) detected 73 advanced lesions (cancer or high-grade dysplasia) pre-operatively. The cancer incidence was 14 of 1000 (95% CI: 5.0-34) person years duration (pyd) and the incidence of any advanced lesion was 30 of 1000 pyd (95% CI: 12-76). When LGD is detected on surveillance there is a ninefold risk of developing cancer (OR: 9.0, 95% CI: 4.0-20.5) and 12-fold risk of developing any advanced lesion (OR: 11.9, 95% CI: 5.2-27). CONCLUSIONS: The risk of developing cancer in patients with LGD is high. These estimates are valuable for decision-making when LGD is encountered on surveillance.

Long-term prognosis in Crohn's disease: An epidemiological study of patients diagnosed more than 20 years ago in Cardiff.

AIM: To investigate the incidence of death in patients diagnosed with Crohn's disease in Cardiff over 20 years ago. METHODS: The Cardiff database of patients with Crohn's disease contains data on all patients diagnosed there since 1934. Patients (394) diagnosed before 1 January 1985 were traced and their mortality status on 31 December 2004 was established. RESULTS: The overall standardized mortality ratio (SMR) was 1.29 (95% CI 1.12-1.45) and it has not significantly changed since the 1970s. SMR decreases with age, from 16.95 (95% CI 14.99-18.91) for patients aged 10-19 years (although only one death) to 0.92 (95% CI 0.65-1.19) in those over 75 years. Kaplan-Meier analysis of age at death shows that patients diagnosed aged 10-26 years have median age at death of 58 years, those aged 27-52 years of 66 years, those aged 53-58 years of 74 years, and those over 59 years of 79 years. CONCLUSIONS: It shows a significantly raised SMR, not statistically changed since the 1970s and similar to other chronic conditions. Patients diagnosed younger have worse prognosis than those diagnosed later in life and a reduced life expectancy compared with the general population.