Inflammatory bowel disease (IBD) is increasingly recognised as a problem among children and young people. It is a chronic condition that clearly has an impact well beyond childhood and the teenage years and has the potential to affect the whole of a person's life. Its recognition in the early years of life has meant that we can assess its impact on day-to-day activities and see how its effects can influence educational achievement and job prospects. For many parents and children, these aspects of a chronic condition are of limited initial concern when faced with the problems of chronic ill health and unpleasant investigations. Such effects, however, are important and are sometimes only recognised when any remedy is too late to be effective.
During the past 5 to 10 years, there has been a growing body of work on the consequences of IBD within all aspects of people's lives. Education and work prospects are two areas examined, but there are also consequences in personal relationships that will be touched on in this review.
EDUCATION AND INFLAMMATORY BOWEL DISEASE
An early study on the magnitude of the problem of IBD was conducted between Leicestershire and South Glamorgan (1). In this study some 98 schools were approached and 48,000 pupils involved. Headmasters were asked to provide information about the number of pupils in their schools affected by Crohn's disease or ulcerative colitis. In addition, they were asked about the provision of special facilities for pupils with such chronic diseases and the attitude of teachers toward examinations. A 71% response rate was obtained, and 16 pupils with either ulcerative colitis or Crohn's disease were identified-a crude prevalence of 33/105. This suggests that headmasters were unaware of the diagnosis among some of their pupils, and although it could be that a percentage of these students had only mild disease, it is of some concern that they were probably not identified. It is likely that even pupils with mild disease may experience a deterioration in their symptoms at times of examination.
Seventy-nine percent of the headmasters approached had heard of these conditions. However, awareness of the diseases was much more common in South Glamorgan than in Leicestershire; the difference just reached statistical significance. Clearly, there has been a long record of research on both Crohn's disease and ulcerative colitis in South Glamorgan, and this has include work in the community. For these reasons, it is likely that people living and working in South Glamorgan are more aware of the impact of these diseases on their society in general. It was reassuring to discover that 98% of the head teachers who responded would inform examining bodies of their pupil's condition in the hope that it might favourably influence the final marks in any assessment. Respondents were also enthusiastic about encouraging the education of all their pupils about chronic diseases by nurses who would come to the schools for this specific purpose. Within the context of the study, Crohn's disease and ulcerative colitis were foremost in the teachers' thoughts when they responded to the questionnaire.
It was as a result of this study that a Factbook of IBD: A Primer for Lecturers and Teachers was prepared by a small group of doctors and teachers (2). It was designed to be easily read by teachers and had a Flesch Reading Ease Score of 47.9. The book was distributed throughout the 156 schools in Leicestershire, an area chosen because of the lower knowledge base regarding IBD of the head teachers involved in the previous study. Leicestershire is rather an unusual community, in that 30% or more of the pupils are of South Asian origin. This population has a higher prevalence of ulcerative colitis than do Europeans (3), which is likely to mean that these conditions have an even greater impact on day-to-day educational activities. The booklet was considered useful and to contain clear messages, but there was a desire for much more information on two specific areas: stomas and acceptable levels of exercise for pupils affected by these conditions.
The need for good quality information on the consequences of IBD on educational achievement has been identified in a retrospective case-control study conducted in Cardiff (4) among young adults with Crohn's disease. Eighty-three patients with the condition were approached, but only 58 (70%) agreed to participate. These patients were matched with 23 "buddy" and 27 community control subjects, who were selected from the same social background as the patients. The data obtained from the "buddy" and community control subjects were statistically similar, and it was therefore possible to compare patients directly with the control group.
The educational outcomes that were measured included: age at leaving school, qualification obtained, and the nature of any institution attended for further education. On average, both groups left school at 17 years of age. They obtained similar qualifications at GCSE, advanced level, primary, and postgraduate degree levels. This was paralleled by a comparable attendance at institutions of further education. Such institutions included those that train for professional rather than academic qualifications. This study provided evidence that despite the problems that young people with Crohn's disease have, they can obtain qualifications comparable with those of their peers. This should not be interpreted as a reason for providing no additional help: Rather, it emphasises the way in which patients with these conditions can cope with adversity. There is support for this view from studies performed some years ago on attendance at work (5,6). The results of these studies have suggested that people with IBD achieve a good record of employment despite their illness.
INFLAMMATORY BOWEL DISEASE AND WORK
Do patients with IBD experience discrimination at work? If so, is this real rather than simply a patient's perception? Sixty-one of Britain's largest companies were approached, in addition to a smaller number of representative companies in Cardiff and Leicester (7). In all, 195 personnel managers were interviewed about the number of their employees who had IBD. Questions were also asked about the potential effects of ulcerative colitis and Crohn's disease on continued employment and the part these disease would play in any assessment of a job applicant. In view of the nature of the study the rather poor response rate of 27% is not surprising and equates with the level to be expected in most market survey projects that assess opinion.
From the data supplied by 35 of the companies (7) it is possible to compare the known number of cases in the work force with the expected number. Among the 304, 537 people working for these organisations, there were 33 employees with Crohn's disease and 26 with ulcerative colitis. This is significantly fewer than the minimum expected number, which would be approximately 457 (chi-square = 240; p < 0.001). Thirty-six percent of companies kept files on employees with IBD, and in 21% of cases these were available to company managers. Although only two companies said they would reject a job application from someone with IBD, the remainder would rely on routine pre-employment medical examinations before reaching a final decision. Eight percent of companies acknowledged that the development of IBD would prejudice an employee's chances of promotion. This contrasted with the company opinion that, in general, they would support an employee who experienced development of IBD or who had a relapse and offer the person lighter work for a period (60%), and 16% would pay for private care. However, in practice 30% of companies were not prepared to extend to employees paid leave to attend outpatient clinics.
The case-control study (4) among young people with Crohn's disease in Cardiff confirmed evidence of discrimination. Despite their comparable educational background, 50% of patients experienced significantly longer periods of unemployment (24%) than did healthy control subjects. Forty-three percent of patients said that their disease had prevented their seeking promotion, and 37% said it had prevented promotion. For these reasons 37% of patients thought their employers should not know the diagnosis and 30% were in favour of active concealment of their conditions. Similar results have been reported by Wyke et al., (6) although only 8% of patients in their study group thought that they had experienced discrimination.
The role of an information booklet written specifically for an employer is less clear than that for teachers (8). Although a small number of patients thought that such a booklet should be made available to their managers, they thought managers should be informed by doctors or self-help groups rather than the employees themselves.
THE WAY FORWARD
Gastroenterologists, specialist nurses and self-help groups must support young people with IBD, both at school and in further education. Central to this approach is the better education of teachers about the disease and the development of appropriate support at times of examination. However, there is also a need for sensitive preparation of young people with IBD to face the difficulties that they will inevitably experience when they try to enter the employment market. There are other areas in which education is also needed. Not the least among these are the difficulties that people with IBD have in sexual relationships, with 50% of young women in a stable partnership abstaining completely from sexual intercourse (9).
We can no longer ignore the needs of our patients but must become involved in the development of on-going support and educational programmes for all of them.
1. Probert CSJ, Mayberry MK, Mayberry JF. Education and young people with inflammatory bowel disease. J Roy Soc Health
2. Mayberry MK, Mayberry JF. An information booklet for schools to help teachers deal with students with inflammatory bowel disease. J Clin Nurs
3. Probert CSJ, Jayanthi V, Pinder D, Wicks AC, Mayberry JF. Epidemiological study of ulcerative proctocolitis in Indian migrants and the indigenous population of Leicestershire. Gut
4. Mayberry MK, Probert C, Srivastava E, Rhodes J, Mayberry JF. Perceived discrimination in education and employment by people with Crohn's disease: A case control study of educational achievement and employment. Gut
5. Mayberry JF, Dew MJ, Morris JS, Powell DB. An audit of Crohn's disease in a defined population. J Roy Coll Phys Lond
6. Wyke RJ, Edwards FC, Allan RN. Employment problems and prospects for patients with inflammatory bowel disease. Gut
7. Moody GA, Probert CSJ, Jayanthi V, Mayberry JF. The attitude of employers to people with inflammatory bowel disease. Soc Sci Med
8. Mayberry MK, Mayberry JF. An information booklet for employers on inflammatory bowel disease: An evaluation by patients. J Roy Soc Med
9. Moody G, Probert CSJ, Srivastava EM, Rhodes J, Mayberry JF. Sexual dysfunction among women with Crohn's disease: A hidden problems. Digestion
Manchester Business School, 17 September 1997
On behalf of the North American and European Collaborative Research Groups on Pediatric IBD