Incorporating patients' views and experiences of life with IBS in the development of an evidence based self-help guidebook

To become active partners in chronic illness management, patients need relevant information which clearly explains treatment choices. This paper describes a method of producing information to feed into production of a guidebook for people with irritable bowel syndrome (IBS). Users were involved throughout the development process. Five focus groups were held involving 23 people with IBS out of 147 who responded to a newspaper article asking for help with a study of self-care in IBS. Qualitative analysis of transcripts from these meetings formed the basis of guidebook development. Patients described their experiences, coping strategies, experiences of the healthcare system, treatments and social consequences of the condition. Medical literature searches were made to find answers to identified areas of information need. The book includes direct quotes from patients describing their own experiences. Guided and practical ways of support are required for people with IBS who want to self-manage their condition. (C) 2003 Elsevier Science Ireland Ltd. All rights reserved.