BARRIERS TO DIAGNOSIS, TREATMENT, AND CARE FOR IgG4-RELATED DISEASE: DATA FROM A LARGE COHORT OF ITALIAN PATIENTS

Background: Patients diagnosed with Immunoglobulin G4-Related Disease (IgG4-RD) confront decisions about how to treat their disease, interact with their health care providers, and modify lifestyle choices that may improve treatment outcomes. Objectives: Researchers sought to examine the obstacles that people living with IgG4-RD regularly face, and what patient-centered educational and supportive resources would benefit IgG4-RD patients. Methods: A cross-sectional online survey was designed by researchers, clinicians, and patients to collect information on IgG4-RD patients’ experiences with their disease diagnosis, treatment, and management. The survey asked questions on informational and environmental barriers, patient motivations and barriers, behavior and provider barriers, and social facilitation, as well as demographic information. The survey was fielded in Italian to patients at the IgG4-RD Clinic of San Raffaele Hospital in Milan, Italy. Results: A total of 146 patients diagnosed with IgG4-RD completed the survey. Participants (pts) reported an average age of 64 years (SD: 12). Questions on gender and race/ethnicity were optional, however, 27% reported being female and 30% reported being male (Table 1). For race and ethnicity, 53% reported being European. Many pts (62%) reported having at least a high school education. Nearly half of pts (47%) reported being retired while 36% reported being employed. Most of the pts (69%) were married. Regarding the diagnosis process, one third of pts (34%) reported seeing 3-5 doctors for their symptoms prior to being diagnosed, with another third (33%) reporting seeing greater than 5. The time from symptom onset to diagnosis was on average (SD) 2 (3) years and pts received their diagnosis on average 4 (3) years prior to the time of the survey. More than half (55%) reported being diagnosed with other conditions before receiving their IgG4-RD diagnosis, with the most prevalent being cancer (36%). Fifty-five percent reported having organ damage caused by IgG4-RD before their diagnosis was made, with about a quarter reporting damage done to their pancreas (28%), lacrimal glands (25%), and bile ducts (22%). Half of patients (49%) on a prescribed medication reported currently taking prednisone. Fewer than half of pts (46%) reported having ever taken prednisone for their IgG4-RD, with the highest daily dose being greater than 10mg/day, reported by 80% of those who have taken it. The information most important to pts to know when making decisions about treatment were available IgG4-RD treatment options (63%), side effects of treatment (51%), length of treatment (e.g. lifelong versus treating symptoms as they occur) (49%), and what happens if IgG4-RD is not adequately treated (46%). Most pts reported getting information about their IgG4-RD from their rheumatologist (82%). More than two-thirds of pts want more information on long-term effects of treatment (72%) followed by foods/diet that might improve symptoms (57%) and treatment options that might be available (42%). If pts felt their symptoms were not well managed, most pts reported that they were most likely to talk to their doctor (77%), followed by tracking their symptoms (57%) and making a lifestyle change (42%). While more than half reported not having concerns about their ability to see a doctor for their IgG4-RD (56%), 26% reported not having enough doctors to choose from for their care and 16% reported not trusting that a doctor will know enough about IgG4-RD to treat them. Conclusion: The survey identified unmet needs in IgG4-RD diagnosis, treatment, and information. Pts reported challenges with receiving an IgG4-RD diagnosis, with greater than two-thirds seeing 3 or more doctors before being diagnosed and many reporting organ damage prior to their diagnosis. A quarter reported not having enough doctors to choose from for their care. Many pts wanted more information about treatment options available and the long-term effects of treatment. REFERENCES: NIL. Table 1. Participant Demographic Characteristics (N=146) Figure 1. Aspects of Participants’ Treatment or Care Participants Would Like More Information About (N=146) Acknowledgements: This study was done with sponsorship support from Horizon Therapeutics. Disclosure of Interests: None declared. DOI: 10.1136/annrheumdis-2024-eular.3176 Keywords: Quality of life, Patient information and education Citation: , volume 83, supplement 1, year 2024, page 2200Session: Patient information and education (Publication Only)

Quality of life, Patient information and education