Education and learning for people with ankylosing spondylitis

Abstract

Background: Whilst many isolated educational interventions have been evaluated, less is known about the practical steps patients take to learn about their condition and how to live with it, the factors that influence their learning, or even the ability and inclination of health professionals to provide relevant education. Understanding the experience of education for people with ankylosing spondylitis (AS) will help to develop resources in the future and tailor existing resources for individual patients. Methods: Focus groups and a survey of UK Rheumatology health professionals were used to describe current practice and professionals’ perspectives of education for people with AS. Patients’ perspectives of learning were reported through focus groups, serial semi-structured interviews with 10 ‘new’ patients with AS, and further interviews with 12 ‘review’ patients. Finally, consensus methods were employed to review the findings. Results: A detailed description of education and learning for people with ankylosing spondylitis has been constructed, based on the current provision of education and the perspectives of both patients and relevant health professionals. Analysis of the interviews with patients led to the development of the Established Patient Model, which describes a search for information in four stages. The model indicates that patients do not strive to be experts on their condition, but instead reach a self-defined level of adequate knowledge based on their background and the disruption to their lives caused by AS. Conclusions: This thesis details how, when and why people with AS learn about their condition, and the content and delivery methods they value and choose. Equally, I have identified variations in the delivery of education by Rheumatology Departments. Understanding these issues allows changes to the provision and organisation of educational resources to be suggested. These potentially complement and facilitate patients’ learning, allowing clinicians to recommend educational resources which are likely to be acceptable and useful.