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What should I do? Ulcerative Colitis Health Management Guide. A Kennedy, A Robinson (Pp 80; illustrated). UK: RTFB Publishers, 2000. ISBN 9 781902 983073
A booklet little larger than the size of a two column review (10 cm×17 cm) may seem unimportant. But this is an exception. This publication is for patients with ulcerative colitis and such sources of information should be the concern of gastroenterologists. It has been written by Andrew Robinson, whose self management programme for patients with colitis lead to fewer outpatient visits, more rapid treatment of relapse, and improved patient satisfaction (Gut 1999;44:A12), and Anne Kennedy, a research fellow in primary care. They have been assisted by a professional writer and sensibly had the guide endorsed by the Plain English Campaign.
The guide consists of two booklets in a single plastic folder. Part 1 includes an overview of ulcerative colitis, tests, treatment, and surgery. Part 2 is an individual patient record. There is much to be commended, with detailed information helpfully summarised in coloured boxes (“Things to Remember”), or treatment options discussed (“Your Choice”) and anecdotes from patients that give a personal appeal. Clinical views and opinions are, on the whole, well balanced and I could see this guide being a valuable contribution to patient information. Faults however qualify this commendation. The surgical subsection on ileorectal anastomosis for ulcerative colitis is wholly inappropriate and there is confusion in terminology in the section on pouch surgery. Factual errors (such as a “2% risk” of ulcerative colitis in offspring, or “5-mercaptopurine”) and statements such as “immunosuppressants may make your baby very small and can lead to abnormalities” are simply misleading. Indeed the whole section on pregnancy is poor, with two anecdotes from patients advising cutting down or stopping maintenance therapy. It was surprising that there was no information for adolescents, or on osteoporosis, and little mention about the dilemmas of coexisting irritable bowel syndrome or the implications of differentiating ulcerative colitis from Crohn's colitis. A brief mention of new therapies on the horizon would have suited the aim of the book, if only to highlight the importance of clinical and basic science research, which were simply ignored.
The patient record booklet is a good idea but constructed in a bizarre manner: only three pages for clinic visits but four sections for documenting “usual treatment when well” and five boxes for details on “what to do in the event of a relapse”! A 2 cm space is allotted for recording the results of monitoring steroid or azathioprine therapy when a whole record page to document the dates and results of blood monitoring would have been helpful bearing in mind that treatment with azathioprine often extends for several years. It is this sort of detail, along with the errors in the main text, that gives an impression of clinical inexperience.
Nevertheless, these points are correctable and if asked by a patient I would broadly recommend the guide. There is nothing else like it on the market and it gives far more useful information than can be readily gleaned from the Internet or from pharmaceutical sponsored freebies. I hope that the authors will stand by their commitment to update the guide every two years. This means that they should be working on the 2001 edition now.
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