An evidence‐based, pocket‐sized comprehensive guidebook has been developed which enables people with ulcerative colitis to take an active part in managing their condition. The guidebook aims to give people the ability, knowledge and support to make informed choices about treatment and will also give them tailor‐made instructions on how and when to initiate self‐treatment.
The research involved collaboration between the Department of Gastroenterology at Hope Hospital in Salford and the National Primary Care Research and Development Centre at the University of Manchester. The guidebook is the first of a series of self‐help guides for people with chronic conditions. The process of development is described in Kennedy et al. 1 Involvement of the patient or user at all stages of development has been the driving force behind our method of development.
Funding for research and development (R & D) came from the following sources:
• initial funding: King’s Fund Promoting Patient Choice Project;
• evaluation funding: NHS North‐west R & D: evaluation of a patient‐centred approach to the management of ulcerative colitis;
• NHS R & D programme Health Technology Assessment – different techniques of shared clinical decision‐making: randomised controlled trial (RCT) to assess the impact of a package comprising a patient orientated, evidence based self‐help guidebook and patient‐centred consultations on disease management and satisfaction in inflammatory bowel disease.
The Health Technology Assessment project will bring together the three strands of the management strategy we have developed to allow shared clinical decision‐making. The RCT will determine whether the strategy improves patient outcomes and leads to more cost‐effective use of health service resources. The approach is:
1 to use the guidebook as a tool to empower patients; enable informed choice and self‐management;
2 to train the consultant and team to give patient‐centred care;
3 to allow patients to self‐refer to out‐patient clinics.
The development and evaluation of the guidebook has shown that it is acceptable to patients and that it meets the information needs of this group. The team has demonstrated that self‐management in inflammatory bowel disease is effective 2 and that patients prefer the self‐ referral method of follow‐up and importantly, do not abuse the system. Gastroenterologists do recognize the need for informed patient choice in the management of ulcerative colitis and the need to encourage self‐management. 3
The use of the guidebook in the context of patient‐centred consultations will facilitate this.
How have patients been involved in the development of the guidebook?
Individuals were interviewed at out‐patient clinics to find out their information needs and concerns about treatment. A patient support group, the National Association for Colitis and Crohn’s Disease (NACC), was contacted and members were found who were willing to take part in focus group meetings and to help in the development of the guidebook. These people helped in deciding on the content and general tone of the guidebook.
How can patients use the guidebook?
As well as giving detailed information about ulcerative colitis, the guidebook includes a number of sections which give details of how choices about treatment can be made. The areas of choice were determined by:
• asking patients what areas of treatment worried them;
• a search of the medical literature to find out the current areas of controversy in treatment;
• through discussion with recognized experts in the field.
The following areas were identified in which patient choice was relevant:
1 should they take treatment drugs topically (in the form of suppositories and enemas) or take them orally?;
2 should they comply with their doctor’s decision to prescribe glucocorticosteroids? Long‐term use of steroids is something which worries this group of patients;
3 should they consider having surgery and what type of operation would best suit them?;
4 should they undergo surveillance for cancer? People who have had extensive colitis for over 10 years have an increased risk of cancer.
Patients have expressed a need to keep a record of their condition. The guidebook allows them to keep details of their medical results in a section called the ‘log book’. This section also encourages patients to keep a diary of their symptoms and treatment.
The log book has a self‐management section. This section needs to be filled in by the patient and consultant jointly. It includes details of how to recognize a flare‐up and how to start self‐treatment as soon as the flare‐up starts. The patient and doctor decide together what treatment regime should be initiated during flare‐ups, the decision will be based on what the patient has found works best for them.
The guidebook has a user‐friendly design incorporating bright colours, photographs and clear and plentiful diagrams and cartoons. It has been awarded a Crystal Mark by the Plain English Campaign. Throughout the book there are quotes from people with ulcerative colitis to show that it is possible to lead a positive and fulfilling life when you have a chronic disease. People with colitis can give the guidebook to their family to help them understand what it means to have ulcerative colitis.
How can health professionals use the guidebook?
The guidebook can be used to educate health professionals as well as patients. The information on treatment is evidence based and will be updated every 2 years. It can be used to help communication between patients and their doctors in primary and secondary care. It enables a working partnership to be developed between the patient and the doctor and helps the patient to take on responsibility for managing their condition.
The guidebook has now been published and is available for purchase by individuals and by Health Trusts and Authorities. Other books in the series will include:
• a guidebook for Crohn’s Disease;
• a guidebook for Irritable Bowel Syndrome.
The guidebooks on inflammatory bowel disease (Ulcerative Colitis and Crohn’s Disease) are mainly medically based because there are evidence‐based medical and surgical treatments available. In the case of Irritable Bowel Syndrome, the medical evidence for treatment is not so clear, so lay views and experiences of self‐care are given much more prominence.
For details of how to purchase the guidebooks please contact:
Maria Cairney, National Primary Care Research and Development Centre, 5th Floor, Williamson Building, The University of Manchester, Oxford Road, Manchester M13 9PL, UK.
Edited by Bob Gann
References
- 1. Kennedy AP, Robinson A, Thompson D, Wilkin D. Development of a guidebook to promote patient participation in the management of ulcerative colitis. Health and Social Care in the Community, 1999; 7 (3): 177 186. [DOI] [PubMed] [Google Scholar]
- 2. Robinson JA. Guided Self‐management in Ulcerative Colitis: a New Approach to Treatment PhD Thesis, The University of Manchester, 1998.
- 3. British Society for Gastroenterology . Guidelines in Gastroenterology 4: Inflammatory Bowel Disease London: British Society for Gastroenterology, 1996.