Understanding the patient perspective: IP43. Being Diagnosed with an Inflammatory Arthritis: The Patients' Perspective

Abstract

Background: Having made the decision to seek help for their medical problems patients then experience the bewilderment of receiving a diagnosis. Chronic illness is all about individuality. Crisis theory proposes that coping belongs with the patient's cognitive appraisal of the meaning or significance of the health problem to his or her life. The perceived outcome leads the person to formulate an array of adaptive tasks and then develop the necessary coping skills to deal with these tasks. For example Rheumatoid Arthritis has a familial component therefore some people on reaching the consultation may have an awareness of RA, either good or bad experience. For others the primary reaction may be shock - they are stunned or bewildered that someone often young can be given a diagnosis of arthritis. There are many factors that can influence the way that a person determines their outlook on their illness and these are often based on illness perceptions or beliefs. Most of the literature is now out dated and retrospective and patients recall may be coloured by experience, adaptation and recall. In addition RA drug therapy has been revolutionized by new and more effective drugs, rapid instigation of therapies and the introduction of biologic therapies. It is becoming rare to see patients with severe disabilities but patients illness representations are influenced by their social world (Leventhal et al 2003), and it may be that patients still assume that RA inevitably means disability and possibly a wheelchair in the future. The illness representations and subsequent coping strategies identified in these old studies may therefore no longer be applicable to the experiences of current RA patients. Methods: Patients were invited to join the study by their consultant and were then interviewed two to three weeks before their appointment. They were then followed up two weeks after their consultation and re-interviewed. At both time points participants were asked to complete a booklet of questionnaires relating to their joint problems and covering physical, emotional, psychological and social aspects. Results: These will be presented focusing on the patients' perceptions of their joint problems pre and post diagnosis and how they appraise these within the context of their illness perceptions. Conclusions: Previous studies all interviewed patients at a single time point, rather than prospectively following the journey toward mastery. To continue to follow these patients through their first year on their journey towards mastery and adaptation to explore not only illness perceptions but how and what influences any change will enhance our understanding enabling us to better support that patient journey. Disclosures: The authors have declared no conflicts of interest. Background: Flare' underpins requests for help and treatment decisions, with potentially significant impact on outcome, yet it has not been defined. Informal work suggests a serious mismatch between patient and clinician perception of flare,' with patients perceiving a range of flare' symptoms and even early warning signs, of which clinicians are unaware. Little is known about daily variation in symptoms within current treatment regimens, how patients self-manage these, patient language for flare,' how they differentiate flare' from normal daily variation, what prompts patients to seek help, nor how these relate to adaptation to and experience of RA. If we can identify these features we may be able to improve explanations to newly-diagnosed patients and clarify discussions regarding flare' and reduce distress of delayed help seeking. The results from Phase 1 of a 3-Phase PhD will be presented. Methods: 20 semi-structured interviews were conducted. RA patients who have experienced a flare' during their RA trajectory were purposefully sampled to reflect a range of age, gender, disease duration, disability, current therapies and current flare' status. The selection criteria included patients who have had a diagnosis of RA (Arnett et al 1990) for at least 2 years and who have experienced an RA flare' during their disease duration, who are over 18 and who speak English as a first language. 11 patients were sampled from The Bristol Royal Infirmary where Direct Access (Hewlett et al 2005) is being used, whereby patients initiate their own medical reviews when in flare'. 9 patients were sampled from Cossham Hospital which uses the traditional method of Rheumatologist-initiated reviews. The interviews were analysed using Inductive Thematic Analysis. Results: The results of the interviews will be presented. These will cover how patients experience daily life, how they manage their day-to-day symptoms, how patients decide they are in a flare' and distinguish this from a bad day', how patients manage their flare' symptoms and how they decide it is time to seek help from the Rheumatology team. Conclusions: Patients' experiences of daily life will provide professionals with real examples to assist them in explaining what life will be like to newly diagnosed patients. Understanding why patients wait to seek help has the potential for creating an intervention to encourage help seeking. A contribution to a global definition of Flare' would have the potential to improve communication between Clinicians and patients and to improve clarity in RCT outcomes. Further research is necessary, this research will be continued with a further 2 studies as part of the PhD project. Disclosures: The authors have declared no conflicts of interest. Abstract not provided Background: People with a musculoskeletal condition have described the benefits of consulting with a clinician in terms of enhancing their perception of control, sharing concerns, accessing expert knowledge, seeking reassurance and entering into a partnership aimed at managing their condition. The consultation has the potential to improve patient outcome. This presentation will identify the components that can increase the effectiveness of the consultation Methods: Patients consult for a variety of reasons including: diagnostic clarification, reassurance, to obtain cure or symptomatic relief and/or to seek legitimisation of their symptoms. The key principles of consultation frameworks (such as the Calgary Cambridge model) will be explored and the components required to perform the key tasks of the consultation will be identified. Patients' beliefs and expectations have an important influence on response to treatment and clinical outcome but are frequently not addressed during the consultation and patient dissatisfaction often occurs when insufficient time is spent on the emotional aspects of the situation. To enable the patient to express their expectations and concerns the health professional has to establish a therapeutic environment supporting self disclosure, adopt an appropriate communication style and attend to both verbal and non verbal aspects of the consultation. Results: The features of a good back pain consultation will be used to demonstrate how a model consultation can be carried out. Conclusions: By identifying the key components required to conduct an effective consultation health professionals will be able to reflect on their own consultation style and assess whether a patient centred consultation is occurring. Disclosures: The author has declared no conflicts of interest.