Arthritis Ireland

Background: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.Objectives: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.Methods: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.Results: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-managementThe 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.Conclusion: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.Acknowledgements:NIL.Disclosure of Interests:None declared.

Despite the overall safety and efficacy of COVID-19 vaccinations, rare cases of systemic autoimmune diseases (SAIDs) have been reported post-vaccination. This study used a global survey to analyze SAIDs in susceptible individuals' post-vaccination. A cross-sectional study was conducted among participants with self-reported new-onset SAIDs using the COVID-19 Vaccination in Autoimmune Diseases (COVAD) 2 study dataset-a validated, patient-reported e-survey-to analyze the long-term safety of COVID-19 vaccines. Baseline characteristics of patients with new-onset SAIDs and vaccinated healthy controls (HCs) were compared after propensity score matching based on age and sex in a 1:4 ratio. Of 16 750 individuals, 74 (median age 52 years, 79.9% females, and 76.7% Caucasians) had new-onset SAID post-vaccination, mainly idiopathic inflammatory myopathies (IIMs) (n = 23, 31.51%), arthritis (n = 15; 20.53%), and polymyalgia rheumatica (PMR) (n = 12, 16.40%). Higher odds of new-onset SAIDs were noted among Caucasians (OR = 5.3; 95% CI = 2.9-9.7; p < .001) and Moderna vaccine recipients (OR = 2.7; 95% CI = 1.3-5.3; p = .004). New-onset SAIDs were associated with AID multimorbidity (OR = 1.4; 95% CI = 1.1-1.7; p < .001), mental health disorders (OR = 1.6; 95% CI = 1.3-1.9; p < .001), and mixed race (OR = 2.2; 95% CI = 1.2-4.2; p = .010), where those aged >60 years (OR = 0.6; 95% CI = 0.4-0.8; p = .007) and from high/medium human development index (HDI) countries (compared to very high HDI) reported fewer events than HCs. This study reports a low occurrence of new-onset SAIDs following COVID-19 vaccination, primarily IIMs, PMR, and inflammatory arthritis. Identified risk factors included pre-existing AID multimorbidity, mental health diseases, and mixed race. Revaccination was well tolerated by most patients; therefore, we recommend continuing COVID-19 vaccination in the general population. However, long-term studies are needed to understand the autoimmune phenomena arising post-vaccination.

IntroductionThe growing recognition of holistic patient care highlights the various factors shaping the quality of life of individuals with autoimmune and rheumatic diseases (AIRDs). Beyond the traditional disease measures, there is an emerging acknowledgment of the less-explored aspects, including subjective well-being, social determinants of health, comorbidities, mental health, and medication adherence. Moreover, digital health services have empowered patients to engage actively in decision-making alongside clinicians. To explore these domains within the context of AIRDs, the “Collating the Voice of People with Autoimmune Diseases” COVAD survey was conceived, a successor of the previous two COVAD surveys. In this document, we present the study protocol in comprehensive detail.MethodsThe COVAD-3 survey is a cross-sectional patient self-reported e-survey incorporating multiple widely accepted scales/scores to assess various aspects of patients’ lifestyles objectively. To ensure the survey's accuracy and usability across diverse regions, it will be translated into multiple languages and subjected to rigorous vetting and pilot testing. It will be distributed by collaborators via online platforms and data will be collected from patients with AIRDs, and healthy individuals over eight months. Data analysis will focus on outcome measures related to various social, demographic, economic, and psychological factors.ConclusionWith the increasing awareness to adopt a holistic treatment approach encompassing all avenues of life, the COVAD-3 survey aims to gain valuable insights into the impact of social, demographic, economic, and psychological determinants of health on the subjective well-being in patients with AIRDs, which will contribute to a better understanding of their overall health and well-being.

PurposeDespite evidence demonstrating the health benefits of physical activity (PA), people with arthritis often do not meet recommended PA levels. Whilst various exercise programmes support these people to be active such as the ‘Be Active with Arthritis’ (BAWA) programme from Arthritis Ireland, most individuals reduce their PA after completion of prescribed programmes.AimTo co-develop and pilot test a PA maintenance intervention for those who have participated in BAWA.MethodsThis is a mixed methods project with four phases.Phase 1An evidence synthesis will evaluate effectiveness of interventions for PA maintenance in people with arthritis and extract potential intervention components.Phase 2An observational analysis of BAWA programmes will be undertaken to understand whether behaviour change components that might support PA maintenance are being currently used. This is followed by focus groups with 1) people with arthritis, 2) their carers, 3) the physiotherapists delivering the classes and 4) staff from Arthritis Ireland, to identify support needs and preference for development of a long-term PA programme.Phase 3Data from Phases 1-2 will be triangulated and fed into participatory workshops, to co-develop an intervention. People with arthritis and healthcare/exercise professionals will be invited to these workshops.Phase 4The PA programme, developed in Phase 3, will be piloted using a pre-post evaluation design with 25 people with arthritis in three separate waves. Interviews with programme attendees will explore facilitators of sustaining PA and identify implementation barriers. Public patient involvement will be embedded throughout this research with the formation of a PPI panel and an embedded Patient Researcher, to ensure that patients’ and carers’ lived expertise informs the various phases and final PA intervention.ResultsGiven the early stage of this piece of research, we would welcome feedback from the HEPA community on our plans, and gain insights from similar studies.ConclusionBy enhancing and developing service provision modalities, people with arthritis can remain physically active for as long as possible, improving quality of life, reducing pain, disability, co-morbidities and multi-service use.FundingThis project is jointly funded by the Irish Health Research Board and Arthritis Ireland.

Background: Patient engagement with clinicians results in shared decision making and increased adherence to medication. However, in order for strong patient: clinician partnerships to be achieved, communication barriers need to be identified. Therefore, the aim of this study was to examine the level of understanding of inflammatory arthritis patients and the need for strong patient-partnership in research.Methods: An online anonymous survey was distributed to patients living with inflammatory arthritis which addressed questions about diagnosis, routine tests, medications and how they work, medication adherence, disease flare, heredity, pregnancy, and patient involvement in research.Results: There were 1,873 respondents, 1416 of which had inflammatory arthritis (IA)- rheumatoid arthritis (RA) (65.8%) and psoriatic arthritis (PsA) (34.2%). They were predominantly female (RA 86%, PsA 85 %), aged 55±13 and 50±12 years. Less than 35% of patients had an understanding of diagnostic tests, what was measured and the implication for disease, with 75.5% also concerned about heredity. There was a high level of understanding of how specific medications treat inflammatory arthritis (72.9%). Adherence was also very high (>87%), with the main reasons for stopping medication without the advice of their clinician, ‘feeling better’ and ‘side effects’ however a significant proportion of patients (69.9%) reported a disease-flare following cessation of medication. Patients (31%) were also concerned that inflammatory arthritis reduced their chances of getting pregnant, with only 8% believing arthritis medications were safe to take during pregnancy. Finally, only 9% of patients had ever been asked to participate in a research study.Conclusions: This study demonstrates a need for the development of stronger patient-partnerships with clinicians and researchers in relation to patient education and engagement with research, to create a platform where patients can have meaningful input and involvement in future research studies.

Background: Patient engagement with clinicians results in shared decision making and increased adherence to medication. However, in order for strong patient: clinician partnerships to be achieved, communication barriers need to be identified. Therefore, the aim of this study was to examine the level of understanding of inflammatory arthritis patients and the need for strong patient-partnership in research. Methods: An online anonymous survey was distributed to patients living with inflammatory arthritis which addressed questions about diagnosis, routine tests, medications and how they work, medication adherence, disease flare, heredity, pregnancy, and patient involvement in research. Results: There were 1,873 respondents, 1416 of which had inflammatory arthritis (IA)- rheumatoid arthritis (RA) (65.8%) and psoriatic arthritis (PsA) (34.2%). They were predominantly female (RA 86%, PsA 85 %), aged 55±13 and 50±12 years. Less than 35% of patients had an understanding of diagnostic tests, what was measured and the implication for disease, with 75.5% also concerned about heredity. There was a high level of understanding of how specific medications treat inflammatory arthritis (72.9%). Adherence was also very high (&gt;87%), with the main reasons for stopping medication without the advice of their clinician, ‘feeling better’ and ‘side effects’ however a significant proportion of patients (69.9%) reported a disease-flare following cessation of medication. Patients (31%) were also concerned that inflammatory arthritis reduced their chances of getting pregnant, with only 8% believing arthritis medications were safe to take during pregnancy. Finally, only 9% of patients had ever been asked to participate in a research study. Conclusions: This study demonstrates a need for the development of stronger patient-partnerships with clinicians and researchers in relation to patient education and engagement with research, to create a platform where patients can have meaningful input and involvement in future research studies.