The role of complementary medicine in European and Asian patients with inflammatory bowel disease.

Three hundred and eighty-two patients with known inflammatory bowel disease (IBD) (190 European and 192 Asians) and 190 with coeliac disease were sent a previously validated questionnaire to investigate patients' use of alternative medicine and their views on its effectiveness. Details sought included whether they have ever consulted an alternative practitioner, whether they had followed a course of treatment and its clinical effects. Information about where patients had heard about such alternative practitioners and whether they were told to discontinue their current allopathic medication was sought. Results were analysed after three consecutive mailings, including one in Gujurati to Asian patients. A randomly selected group was re-interviewed four months later. To validate the study alternative medicine practitioners were also interviewed to investigate what percentage of their attendees have IBD and how many of those clients were Asians. One hundred and fifty-eight questionnaires were returned from European patients with IBD (response rate = 83%), 145 from patients with coeliac disease (response rate = 76%) but only 81 Asian patients with IBD (response rate = 42%). Forty-seven European and Asian patients with inflammatory bowel disease sought advice or treatment from an alternative practitioner, compared with only 11 with coeliac disease (chi(2) = 11.64, df = 12, P < 0.003). There was no significant difference in consultation rates between Asian and European patients with IBD (Yates corrected chi(2) = 0.78, ns). The most common practitioners consulted by all groups were homeopaths (n = 23) and herbalists (n = 27) but 20 patients consulted more than one practitioner at a time. Patients with coeliac disease and European patients with IBD had consulted osteopaths (n = 6) and reflexologists (n = 7). Ten patients with IBD had also attended a spiritualist and five Asian patients a hakim. Common sources of information about alternative remedies included friends and relatives (n = 13), the media (n = 11), word of mouth (n = 11) and family practitioners (n = 6). Most patients were advised to continue their current medications, although two had been told to stop and 10 advised to reduce the dose of their allopathic medications. Twenty alternative medicine practitioners stated that overall between 2-5% of their attendees have IBD with 10% of those clients being Asian. Asians preferred to consult Asian practitioners rather than European practitioners. There was no clear consensus as to whether complementary therapies were felt beneficial, although many patients with IBD believed them to be helpful.

The effects of chronic ill health and treatment with sulphasalazine on fertility amongst men and women with inflammatory bowel disease in Leicestershire.

The aims of the study were to ascertain whether patients have similar a fertility rate to the background population in Leicestershire and whether they have a similar rate of congenital malformations compared to the background population in Leicestershire. Over 1400 patients were invided to participate with an overall response rate of 81% after three successive mailings. The response rate was similar for both sexes and between the disease groups. The crude infertility rate for the group was 21%. The mean number of children for the whole group was 1.7 +/- 1.3 but both men and women with Crohn's disease had significantly less children than would be expected, (men with Crohn's disease 1.5, women with Crohn's disease 1.2). There were 39 children (2% of overall births) with congenital abnormalities reported by patients with inflammatory bowel disease and in 29 cases the parents reported taking sulphasalazine (Table 3). Although this figure compares well with the 1.8% reported congenital abnormality rate for Leicestershire within the patient group in this study congenital malformations were significantly related to sulphasalazine use, z = 4.3, P < 0.0001. In conclusion sulphasalazine not only as causes morphological abnormalities in spermatozoa but may increase the chances of having congenitally abnormal offspring amongst men with IBD. The effects of other 5-aminosalacylic acids have yet to be studied in detail.

Long-term therapy with sulphasalazine protects against colorectal cancer in ulcerative colitis: a retrospective study of colorectal cancer risk and compliance with treatment in Leicestershire.

OBJECTIVES: The aims of this study were to (i) estimate the prognosis of a 10-year cohort as expressed by risk of colectomy and risk of development of colorectal cancer, and (ii) assess the impact of long-term sulphasalazine on the natural course of ulcerative colitis. PATIENTS: One hundred and seventy-five patients diagnosed between 1972 and 1981 with either total colitis (n = 143) or with limited ulcerative colitis but deceased (n = 32) were identified. Overall there was 98% case ascertainment and verification. RESULTS: A total of 49 patients underwent a colectomy, 6 as emergency laparotomies, 36 for failed medical management and 7 for known colorectal cancer, giving a crude colectomy rate of 23.2%. The colectomy rate was 7.2% in the year of diagnosis, decreasing in frequency over the next 4 years, then reaching a steady state of approximately 1.7% per year. In the total cohort, colorectal cancer occurred in 10 patients within the study period. The cumulative incidence of colorectal cancer 10 years after diagnosis was 2.1% and at 20 years 7.4% for the total group of patients excluding those with a colectomy. The mean duration of ulcerative colitis before diagnosis was 7.9 years (range 5-12). The crude proportions developing cancer were 5/152 (3%) in the group who took long-term sulphasalazine but 5/16 (31%) in the those who had had their treatment stopped or who did not comply with therapy. This is highly significant using a simple chi 2 test (chi 2 = 20.2, df = 1, P < 0.001). Two methods were used for survival analyses, the log-rank and the generalized Wilcoxon methods. Both give highly significant values for the crude effect of compliance (P < 0.001). CONCLUSION: Patients with ulcerative colitis who were not on long-term sulphasalazine or 5-aminosalicylic acid therapy (either because a doctor stopped it or they did not comply with treatment) were significantly more likely to develop colorectal cancer than their compliant counterparts.

Life insurance and inflammatory bowel disease: is there discrimination against patients?

The aims of this study were to compare and contrast the attitude of major insurance companies to patients with inflammatory bowel disease (IBD) and to a Consultant Gastroenterologist (JFM) requesting guidelines for patients with IBD. The experience of patients in Leicester with insurance companies was also investigated. A standard letter requesting information regarding the likelihood of loading on life assurance in connection with a mortgage was sent to 50 major insurance companies from a typical patient. A similar letter was constructed from a consultant gastroenterologist (JFM) to the same 50 insurance companies requesting simple guidelines for patients with IBD when applying for various types of insurance. A questionnaire investigating the experience of patients with IBD when applying for insurance was also sent to 100 patients with IBD selected at random from the Leicestershire data base of patients with Crohn's disease and ulcerative colitis, 39 insurance companies responded to the request for information by a typical patient, (response rate = 78%). 24 were split between those who thought the patient would be accepted at normal rates (n = 7) and those who would request an increased premium (n = 17). Only 27 companies replied to the letter by a consultant gastroenterologist requesting general guidelines, (response rate = 54%). There were only 17 overlapping replies to the two letters. Of these 17 overlapping replies, five companies (30%) informed the patient to expect increased premiums whilst advising the consultant a similar patient could expect normal rates. Six companies conferred (35%), telling both the patient and the consultant to expect normal rates. Either one or both of the remaining six companies (35%) felt unable to comment without either specific details of the patient or a medical examination. 69% of patients responded to the questionnaire. Over half (54%) had applied for an insurance policy. More than a third of patients had required either a medical examination (36%) or a report from their GP (41%) before being accepted for a policy. 39% of patients had received an additional loading on their policies because of IBD including two patients who had been turned down altogether. In conclusion patients with IBD are clearly discriminated against by insurance companies. Life tables should be amended to take account of the low mortality recognised in recent years. Patients should be aware of the difficulties that currently exist.

A nationwide survey of liver biopsy--is there a need to increase resources, manpower and training?

A postal questionnaire survey was conducted to establish the pattern of current practice of liver biopsy, to estimate the frequency of adverse events and their possible associations, and to compare respondents' personal preferences with what they offer patients. Three hundred and sixty-four members of the British Society of Gastroenterology (BSG) were questioned. There were 296 returns, of which 278 were appropriate, giving an overall response rate of 81.3%. Over the previous 2 years complications were reported in 80 patients who required blood transfusion, 11 who needed laparotomy (including 1 for pain), 13 with septicemic shock, 29 who had peritonitis, and 1 with a subphrenic collection; 53 had pulmonary complications (hemoptysis, pneumothorax and 1 hemothorax), and there were 19 deaths. The overall complication rate was 5.6 per 1,000, and the mortality rate 5.2 per 10,000. The complication rate gradually decreased with increasing number of biopsies performed until the number reached 20 per month, after which there was a significant increase in complications (chi 2 = 42.98, p < 0.001). Although 50% of the respondents were themselves prepared to have a liver biopsy on a day case basis, only 11% do it routinely on patients, and 72% do not offer it at all (chi 2 = 76.8, p < 0.001). There were no differences in complication and death rates between the above groups, but those who do occasional (< 50%) day case biopsies have a significantly higher complication rate (chi 2 = 24.3, p < 0.001).(ABSTRACT TRUNCATED AT 250 WORDS)

Disinterest in local self-help groups amongst patients with inflammatory bowel disease in Leicester.

An invitation to attend the inaugural meeting of a self-help group and a questionnaire were sent to 2084 patients with inflammatory bowel disease (IBD). Twelve months later 180 patients who had joined the group (n = 90) and a similar number who had not, were sent a second questionnaire seeking why they had or had not, and what functions the group had managed to fulfill. 254 (13%) responded and 138 (7%) joined. Patients with Crohn's disease chi 2 = 5.43, P = 0.02) and women (chi 2 = 3.80, P < 0.05) were more likely to join. These differences were not seen amongst the Asians who responded to the questionnaire (chi 2 = 0.01, ns) who were much less likely to respond (chi 2 = 15.1, P < 0.0001). Responders wanted the group to provide an information service (85%) to give an opportunity to discuss problems with other patients (77%) and to promote the needs of people with IBD to the local community. 88% (n = 159) responded to the second questionnaire, including 83 from joiners and 76 from non-joiners. Forty-seven (57% of joiners) had attended meetings. Answers indicated the group provided useful general information (99%), mutual support (66%), information on medical research (70%) and an opportunity to meet (60%). Amongst non-joiners, 81% (n = 62) thought such a group might be useful. Reasons for not joining included: too busy (40%), too far away (23%), managing without support (28%) and reluctance to broadcast their illness (20%).

Perceived sexual dysfunction amongst patients with inflammatory bowel disease.

300 patients with inflammatory bowel disease (IBD) were randomly selected from the community-based register held in Leicester. They were invited to participate in a study investigating personal problems of patients with IBD. 188 patients agreed to participate and were subsequently sent a previously validated questionnaire. A similar questionnaire was sent to buddy controls of similar age, sex and background (n = 76) as well as matched controls drawn at random from general practitioner lists (n = 46). Details sought included demographic data, patients' perception of their disease severity, data relating to treatment, family history, fertility, frequency of sexual intercourse and the effect IBD had on personal relationships. 150 questionnaires were returned from patients (response rate 80%) and 122 from controls. The reliability of a randomly selected group of questionnaires was assessed by direct interview 4 months after the main study (n = 20). There were no demographic differences between the patient and control groups (age: t = 0.67, ns; duration of marriage: t = 0.92, and marital status/number with a regular partner: chi 2 = 14, 12 d.f., p = 0.3). Dyspareunia was commoner amongst patients (n = 15, 38%) than controls (n = 7, 18%), although this was not statistically significant (z = 2.6). There was no significant difference in the overall frequency of sexual intercourse amongst patient and control groups (chi 2 = 12.78, 12 d.f.), even when comparing those with infrequent or no sexual intercourse (chi 2 = 6.98, 4 d.f.) The reliability of these results was confirmed after 4 months when there was no difference in responses in the re-interviewed group.(ABSTRACT TRUNCATED AT 250 WORDS)

The gastroenterology service: a survey of general practitioners' requirements.

A postal questionnaire was sent to 634 Leicestershire general practitioners about the service they wanted from their local gastrointestinal unit. Their views were specifically sought in relation to the care of chronic gastrointestinal disorders such as coeliac disease and inflammatory bowel disease. This initial survey was 'testing the water' before addressing GP needs in all areas of gastroenterology including, management issues in peptic ulcer disease and hiatus hernia. The design of the questionnaire was simple with only 12 'yes' or 'no' stems. The response rate to one mailing of the questionnaire was 41% with the rate for each question ranging from 83% (on whether a telephone hot-line would be useful) to 99% (on the value of treatment protocols). There was a poor response rate to some individual stems, with rates of less than 10%, because most GPs only answered 'yes' to the stem they were interested in without answering 'no' to other parts. Most GPs wanted a regular news bulletin on the management of both inflammatory bowel disease and coeliac disease as well as detailed protocols on their treatment. Sixty per cent of respondents wanted a telephone hot line to senior gastroenterologists, with direct dialing to provide immediate advice. Eighty per cent of GPs want shared care with hospital consultants of such patients. A similar proportion thought that this decision should be made jointly by patients and their doctors. There is a clear desire by GPs for a more specialist education in line with the current trend of extending their role. GPs in Leicestershire would value a more active role in the management of patients with chronic intestinal diseases and it is likely that such views are widespread in Great Britain.

The attitude of employers to people with inflammatory bowel disease.

Many patients with inflammatory bowel disease are anxious about their future prospects of employment. Personnel managers at 61 major national and 136 principal local employers in Leicester and Cardiff were asked to provide details about their attitude to people with inflammatory bowel disease and the type of health care they offer to employees. Over one million people were employed by these companies. A poor response rate of 27% suggested at best disinterest in the subject on the part of employers. In those who did reply the attitude to people with inflammatory bowel disease was often positive, although up to a quarter (25%) would not continue to employ people if they developed these conditions and many (30%) would not provide time off work to attend hospital clinics. Only 60% of respondents would consider providing lighter duties to affected employees. In general there is a surprisingly negative attitude to promotion of people with chronic diseases such as epilepsy, multiple sclerosis or liver disease. This seems less so in inflammatory bowel disease.