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Biomedical subjects

J F Mayberry

Publications and source records attributed to J F Mayberry.

At least 19 recordsLinked to original sources

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.

Age Factors↗

Long-term prognosis in Crohn's disease: factors that affect quality of life.

BACKGROUND: There are many studies investigating quality of life in recently diagnosed patients and following surgery for Crohn's disease, but there are none investigating quality of life changes with disease duration. The response shift model suggests quality of life improves with time following diagnosis. AIM: To assess how well the model applies to patients with Crohn's disease. METHODS: The Cardiff Crohn's disease database contains data on all patients diagnosed there since 1934. Three hundred and ninety four patients diagnosed before 1 January 1985 were traced and the mortality status on 31 December 2004 established. Two hundred and eleven still living were sent quality of life questionnaires. Two hundred and eighty five questionnaires were sent to patients with varying disease duration attending out-patient clinics in Leicester. RESULTS: Eighty-nine valid replies were received from Cardiff, 63 from Leicester patients diagnosed over 20 years, 69 from Leicester patients diagnosed <10 years. There was no difference in quality of life between newly diagnosed and established patients. Of greatest concern was possible need for ostomy, uncertain nature of disease, and lack of energy. Stepwise regression showed that increased disease severity, older age and smoking adversely affect quality of life. DISCUSSION: Quality of life is equally poor in patients with established disease as in those newly diagnosed, and directly correlates with disease severity. The response shift model may not be applicable in Crohn's disease.

Adult↗

Can an information booklet on an ethnic minority increase the knowledge base of junior doctors?

Many doctors encounter people of different cultural backgrounds for the first time as patients. In Leicester a significant proportion of the area's population comes from a Gujarati and Hindu background. In an attempt to better inform junior doctors about the views and beliefs of their patients, a group of clinicians and administrators developed an information booklet about the beliefs and practices of people from this community. The impact of this booklet on a group of 54 junior doctors' knowledge was investigated over a period of one month. Such an information booklet was found to significantly increase awareness of the cultural background of patients from a minority community and this knowledge was maintained for at least one month after distribution. The study did not investigate impact on attitudes.

Clinical Competence↗

Occupation and gastric cancer.

Gastric cancer is a cause of significant morbidity and mortality. There are several risk factors, with occupation emerging as one of these. There is considerable evidence that occupations in coal and tin mining, metal processing, particularly steel and iron, and rubber manufacturing industries lead to an increased risk of gastric cancer. Other "dusty" occupations-for example, wood processing, or work in high temperature environments have also been implicated but the evidence is not strong. The mechanism of pathogenesis of gastric cancer is unclear and the identification of causative agents can be difficult. Dust is thought to be a contributor to the pathological process, but well known carcinogens such as N-nitroso compounds have been detected in some environments. Further research on responsible agents is necessary and screening for detection of precursor gastric cancer lesions at the workplace merits consideration.

Chemical Industry↗

An industry based approach to colorectal cancer screening in an asymptomatic population.

The uptake of faecal occult blood testing in a workplace based colorectal cancer screening programme was investigated. Altogether 1828 employees aged 41-65 years at a large British industrial company were invited to receive a free faecal occult blood test (Haemoccult). Faecal occult blood tests were completed on three separate days. Patients with positive results were invited to undergo colonoscopy. The number of employees completing kits was measured and differences in compliance according to age, sex, and occupation were tested with a chi2 test. Compliance was 25.4%, and similar in men (25.0%) and women (32.0%, chi2=3.0, not significant). In men, compliance was highest in those aged 51-60 years (30.5% chi2>1.6, p<0.001). Compliance in women aged 41-50 years, 51-60 years, and 61-65 years was similar (Yates's corrected chi2<2.08, not significant). Managers returned more kits than clerical and blue collar workers (28.6% v 23.5%, chi2=5.6, p<0.02). One percent of tests were positive and one patient had a tubular adenoma. Compliance in employees aged 51-60 years was comparable to that achieved in one-off British general practice programmes, but less than that in the large randomised trial of screening in general practices in Nottinghamshire. Health education of large numbers of people is easier at the workplace than in the community. Future screening must target older employees and those with clerical and blue collar jobs.

Adult↗

Does patient knowledge affect the colorectal cancer risk in ulcerative colitis?

OBJECTIVES: Formal efforts to improve patient education are associated with fewer disease complications in a number of conditions. The possible relationship between knowledge about ulcerative colitis and its cancer risk, and the development of colorectal cancer using a previously developed and validated instrument-the Crohn's and colitis knowledge (CCKNOW) score-were investigated. METHODS: The 24 item CCKNOW questionnaire was mailed to patients known to have developed colorectal cancer as a complication of ulcerative colitis (cases) and to colitics from the Leicestershire inflammatory bowel disease patient database who had not developed cancer (controls). RESULTS: The mean (SD) CCKNOW scores for cases was 8.21 (3.02) and for controls was 8.27 (4.3). These scores did not differ significantly between cases and controls (difference 0.06, 95% confidence interval (CI) -1.7 to 1.5, p=0.9). There were four times as many members of the National Association of Crohn's and Colitis (NACC) in the control group compared with the cancer group and patients who are members of NACC achieve statistically significantly higher scores than non-members (11.6 v 7.8, p=0.05, 95% CI -0.1 to 7.6). However, after adjusting for NACC membership, the CCKNOW score did not appear to be associated with having developed cancer (odds ratio 1.04, 95% CI 0.92 to 1.18, p=0.5). CONCLUSIONS: The CCKNOW scores were comparable in cases and controls. Thus, in a retrospective study, no evidence has been demonstrated of an association between patient knowledge and the risk of developing colorectal cancer in patients with ulcerative colitis. However, knowledge may have been increased in cases as a direct result of having had colorectal cancer as a complication of ulcerative colitis.

Colitis, Ulcerative↗

Screening: the legal view.

Screening has become central to the effective prevention of several diseases, but implementation suffers from difficulties with targeting and rates of compliance. Such issues are also complicated by the need to consider legal provisions regarding confidentiality of patients and other human rights issues. Screening has been an inexact science in relation to, e.g., faecal occult blood testing for colorectal cancer, false positive and false negative tests for HIV, and there have been inadequate quality controls in breast cancer screening programmes. The public need to be made aware of what the screening programmes really offer, balanced against the expectations they may have. There needs to be a clearer understanding of the nature of the contractual and other legal rights of patients/consumers as against providers. A positive screening test may carry adverse consequences as well as benefits. It could alert an insurance company to a risk and lead to additional weighting or even outright rejection for life insurance policies. Job prospects may also be affected for employees. The method of informing patients in relation to screening and screening failure has already been considered by the courts. Realistic information about both screening and treatment efficiency needs to be offered to patients so that they can have a real understanding of what can and cannot be achieved by current science. The development of understanding of the human genome makes the need for clearer legislation in this are more urgent.

Confidentiality↗

Patient information booklets for Asian patients with ulcerative colitis.

Our aim was to address the information requirements for ulcerative colitis patients from Asian ethnic minorities in Leicester city. We sought to determine if the information leaflets provided in English could be successfully employed when translated into the common South Asian languages. A postal survey determined the initial demand for information leaflets, offering the leaflet in English, Hindi, Gujarati or Punjabi. Follow up questionnaires were again by post and subsequently by telephone contact. All patients found the leaflets useful, but felt that doctors should do more to help with language problems. On reading the leaflets, sixty-six percent of patients experienced reduced levels of anxiety or no change, whereas thirty-three percent found increased levels of anxiety. Nearly two-thirds of patients felt there was insufficient or satisfactory information in the leaflets. The final response rate for returning the questionnaire was 53%. The leaflets were generally well received, but there may be a role for increased detail, which may in turn reduce anxiety levels. The low response rates highlight the difficulty of communication with this group, suggesting that we need to make more resources available to these patients.

Asia↗

Enteric-release glyceryl trinitrate in active Crohn's disease: a randomized, double-blind, placebo-controlled trial.

BACKGROUND: Mucosal ischaemia may contribute to the pathogenesis of Crohn's disease. Microvascular abnormalities have been found in colonic resection specimens, and mucosal levels of constitutive nitric oxide synthase are reduced. AIM: To assess the efficacy of a novel, enteric-release formulation of the nitric oxide donor, glyceryl trinitrate, aimed at increasing the mucosal circulation and relaxing smooth muscle in the affected bowel. METHODS: The trial was randomized, double-blind and placebo-controlled. Baseline disease activity was assessed by a structured symptom diary, with blood tests and a quality of life assessment. Patients with a Crohn's disease activity index of > or = 150 and < 450 were randomized to receive 12 weeks of either glyceryl trinitrate (initially 6 mg twice daily, increasing to 9 mg twice daily after 6 weeks) or an identical placebo. Assessments were repeated at 6 and 12 weeks. RESULTS: Seventy patients (22 male) entered the study; 34 were given glyceryl trinitrate and 36 placebo. At 12 weeks, there were no differences between the treatment groups in terms of Crohn's disease activity index, pain, stool frequency, inflammatory markers or quality of life scores. CONCLUSIONS: Enteric-release glyceryl trinitrate did not benefit patients with mild to moderately active Crohn's disease. Whilst ischaemia may contribute to the pathogenesis of Crohn's disease, our results fail to provide supportive evidence for this hypothesis.

Administration, Oral↗

Towards better informed consent in endoscopy: a study of information and consent processes in gastroscopy and flexible sigmoidoscopy.

OBJECTIVE: To determine the level of knowledge achieved by patients who have read a simple information sheet on gastroscopy and flexible sigmoidoscopy, and to determine the levels of information required by patients and solicitors specializing in clinical negligence. DESIGN: Self-administered questionnaires were sent to 516 patients in Leicester and 79 solicitors specializing in clinical negligence in England and Wales. The main objective outcome measures were the correct scores measured in a simple test of the content of information sheets about gastroscopy and flexible sigmoidoscopy. Other scores were based on the opinions of patients and solicitors on the type of information patients should receive and the levels of risk about which they should be informed. RESULTS: Of the clinical negligence specialists, 75%, compared with 44% of patients, felt that consent to procedures should be obtained 2 weeks before the test. In addition, 86% of solicitors felt that patients needed to be told about tests on at least two occasions and favoured booklets and videos. Both 48% of solicitors and 38% of patients felt that patients should be told of very uncommon risks, with 16% of clinical negligence specialists expecting patients to be told of risks of 1 in 1,000,000. The majority of patients (98%) and solicitors (95%) felt that patients should be formally tested as to whether they understand what they are told in the consent process. In an initial study of an information leaflet, South Asian patients had significantly poorer scores than English patients on formal testing of their knowledge of the leaflet's content. The poorest response (61% correct) was to a question including the word 'indigestion', which had been omitted from the information leaflet. Its inclusion led to a significant increase in the number answering the question correctly (96%). The positioning of a word in the list of reasons for doing the test was also important. In the flexible sigmoidoscopy leaflet, the word 'anaemia' was placed in the middle of a list of reasons for doing the test; only 85% answered the question correctly. In the sample of patients who received the modified gastroscopy leaflet, recall at 6 months was significantly impaired with most loss of memory being related to the purpose of the test. CONCLUSIONS: Consent needs to be supported by easy-to-read information and the patients' understanding needs to be formally tested. Important concepts must be included in this information as well as any uncommon risks of the procedure. In order to ensure that the information can be understood, the text should be reviewed by an experienced educationalist. If the text is to be used in a multicultural setting, it is important to ensure that patients for whom English is not their first language can easily understand it. The movement away from 'informed consent' towards an 'informed decision' process should facilitate these improvements.

Cultural Characteristics↗

The risk of colorectal cancer in ulcerative colitis: a meta-analysis.

BACKGROUND AND AIMS: Controversy surrounds the risk of colorectal cancer (CRC) in ulcerative colitis (UC). Many studies have investigated this risk and reported widely varying rates. METHODS: A literature search using Medline with the explosion of references identified 194 studies. Of these, 116 met our inclusion criteria from which the number of patients and cancers detected could be extracted. Overall pooled estimates, with 95% confidence intervals (CI), of cancer prevalence and incidence were obtained using a random effects model on either the log odds or log incidence scale, as appropriate. RESULTS: The overall prevalence of CRC in any UC patient, based on 116 studies, was estimated to be 3.7% (95% CI 3.2-4.2%). Of the 116 studies, 41 reported colitis duration. From these the overall incidence rate was 3/1000 person years duration (pyd), (95% CI 2/1000 to 4/1000). The overall incidence rate for any child was 6/1000 pyd (95% CI 3/1000 to 13/1000). Of the 41 studies, 19 reported results stratified into 10 year intervals of disease duration. For the first 10 years the incidence rate was 2/1000 pyd (95% CI 1/1000 to 2/1000), for the second decade the incidence rate was estimated to be 7/1000 pyd (95% CI 4/1000 to 12/1000), and in the third decade the incidence rate was 12/1000 pyd (95% CI 7/1000 to 19/1000). These incidence rates corresponded to cumulative probabilities of 2% by 10 years, 8% by 20 years, and 18% by 30 years. The worldwide cancer incidence rates varied geographically, being 5/1000 pyd in the USA, 4/1000 pyd in the UK, and 2/1000 pyd in Scandinavia and other countries. Over time the cancer risk has increased since 1955 but this finding was not significant (p=0.8). CONCLUSIONS: Using new meta-analysis techniques we determined the risk of CRC in UC by decade of disease and defined the risk in pancolitics and children. We found a non-significant increase in risk over time and estimated how risk varies with geography.

Australia↗

Epidemiology and demographics of achalasia.

The incidence and prevalence of achalasia has been reported from a limited number of centers in the US, UK, Israel, Zimbabwe, Singapore, and New Zealand. With two exceptions, the studies have been retrospective. The incidence of the disease is about 0.5/10(5)/year with a prevalence of about 8/10(5) population. However, there appear to be striking international variations and also significant differences within countries. The disease occurs with equal frequency in men and women and is commoner with ageing. The appearance of the disease in the older age groups together with the lack of evidence for an autosomal recessive pattern of inheritance would suggest that environmental factors are important in the cause of the disease.

Adolescent↗