AB1647-PARE LIVING WITH LUPUS IN IRELAND-RESULTS OF A PATIENT SURVEY
Authors: T. Regan, G. O Leary
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> It is estimated that there are 4,000-5,000 people living with lupus in Ireland, although there is an absence of definitive data. Arthritis Ireland carried our patient research during 2023 to better understand the impact of lupus and to know more about the day-to-day problems that affect those living with the disease. <h3>Objectives:</h3> The key objective was to conduct a survey to understand the impact of lupus and to know more about the day-to-day problems that affect those living with the disease. <h3>Methods:</h3> Arthritis Ireland conducted the research through a questionnaire generated using SurveyMonkey and distributed via an email to subscribers who had previously indicated that they live with lupus or have an interest in hearing about lupus developments and events. Additionally, Arthritis Ireland promoted completion of the survey through its social channels. <h3>Results:</h3> In total, 57 people responded to the questionnaire between 26th October and 4th December 2023.The research demonstrated the following results across a wide range of topics: Symptoms: Joint pain (88%) and extreme tiredness (86%) were the most common symptoms cited. This was followed by skin rash at almost 60% and fingers/toes changing colour in cold conditions at 57%. Daily life: Exercise and physical activity (90%) were most impacted followed by family life (69%). Shopping/household duties (57%) and sexual relationships (52%) were also significantly impacted. Mental health: Respondents indicated a negative impact on their mental health due to their disease with anxiety (57%), loneliness (45%) and depression (36%) featuring strongly. 17 respondents indicated that they are very concerned about their future and an additional 21 respondents are somewhat concerned about their future, which indicates a lack of certainty regarding their disease management. Work and career implications: 74% of respondents indicated an adverse impact on their work and career because of their disease. Medication: 93% respondents indicated that they have been prescribed medication for lupus. Medication efficacy: When asked to rate the efficacy of their current medication, just over 32% stated that it is extremely effective while 55% stated that it is somewhat effective. Medication side-effects: 45% reported side-effects from their medication. Nausea was the most widely reported side-effect (73%) followed by diarrhoea (53%), hair loss (42%) and loss of appetite (31%). Flares: Almost 62% of respondents indicated that they experience frequent flares, with 38% people experiencing flares monthly, and almost 31% every 2-3 months. Almost 70% of all respondents continue to experience flares monthly or every 3 months, despite 93% indicating that they have been prescribed medication. 64% of respondents noted that they currently have their disease under control which was somewhat surprising given the number that experience frequent flares. Self-management The majority of respondents (85%) are aware of the role of self-management techniques in managing their condition. 83% use websites as the primary source of information about these techniques. Family planning: 8 respondents indicated that they had sought advice regarding family planning from their medical team with 33 indicating that they had not. <h3>Conclusion:</h3> There are many challenges for those living with lupus (SLE) as it impacts on almost every aspect of the person's life, from family life to daily activities, work, financial circumstances, and mental health. Although 93% of respondents have been prescribed medication, 70% experience flares at least every 3 months. 45% of respondents noted significant side-effects from their current medication. Given that such a high proportion of respondents are unable to work, the costs of not providing adequate treatment to those living with lupus appear to be significant. The overwhelming majority of respondents (85%) are aware of the role of self-management techniques and appear to be actively engaged in the management of their condition.REFERENCES: NIL. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>