178. MY WHOLE LIFE IS ALTERED CONSIDERABLY: LIVING WITH THE ONGOING EFFECTS OF GIANT CELL ARTERITIS SYMPTOMS AND TREATMENTS

Abstract

Background: Giant cell arteritis (GCA) is the most common vasculitis, with symptoms including headache, temporal and scalp tenderness, jaw claudication, fatigue, fever, and visual symptoms. First line treatment is with high-dose glucocorticoids, for example prednisolone. Managing GCA involves balancing the benefits of treatment to minimize symptoms and disease complications against the potential adverse effects of such treatment. Yet, to our knowledge, there are no published qualitative analyses that provide evidence about the impact of GCA and its treatment on patients' everyday lives. This study investigated patient experiences of GCA, focusing on the long-term consequences and impacts of GCA (and its treatment) on patients' lives. Method(s): Participants were recruited using two approaches. First, invitation letters were sent to GCA patients who had consented to further contact in a previous cross-sectional survey. Second, an invitation was circulated by the PMRGCAUK charity to members by email. Purposive sampling categories included age, gender, and time since diagnosis. Twenty-five telephone interviews were conducted and audio-recorded. A list of topics and prompts was used to guide interviews, which lasted between 29 and 128 min. Interview recordings were transcribed verbatim and an inductive thematic approach was taken to analysis. One transcript was excluded from analysis because the patient's diagnosis was changed. Result(s): Participants' ages ranged from 65 to 92 years, with time since diagnosis ranging from 2 months to >6 years. Overarching themes from analysis were ongoing symptoms and side effects and life changing impacts. Symptoms and side effects included fatigue, pain, sight loss, visual symptoms, osteoporosis, changes in mood, changes in appearance, and sleep. Activities, behaviours and circumstances that were affected included work/volunteering; relationships; hobbies, social and leisure activities; household tasks, daily routines and personal care; financial circumstances; and driving. Psychological effects were frustration, fear, anxiety, uncertainty, and impacts on feelings of independence, coping, and confidence. Living with GCA was an ongoing experience resulting from the combination and concurrence of symptoms, side effects, adaptions to life and impacts on sense of normality. Conclusion(s): This study provides the first qualitative investigation evidencing the impact of GCA on patients' everyday lives. Data demonstrate the considerable ongoing physical and psychological problems that affect GCA patients' lives in a wide variety of ways. The burden of glucocorticoid treatment and fear and anxiety about visual loss were strong contributors to the loss of normality that patients experienced. More holistic approaches to management of the condition are needed to focus on the priorities of each patient, legitimizing their experiences of GCA, and allowing them to optimize their sense of normality and plan for life adaptions. The patients' experiences evidenced in this study can add to conventional medical explanations of disease impact on everyday life, trajectories, and time scales for presence of GCA symptoms and side effects.