Patients’, caregivers and clinicians’ perspectives on education and support about methotrexate: survey to 26 European Countries

Objectives: To assess patients’, carers’, nurses’ and physicians’ perspectives and experiences regarding patient education (PE) and support of Methotrexate (MTX) treatment in Europe. Methods: An international team of researchers and clinicians, including rheumatology nurses, a pharmacist, a rheumatologist, and three patient representatives, developed a survey. Common and sample-specific questions were conceived for adult patients or carers (≥18 years) of children/young people with RMDs, nurses, and physicians working in rheumatology practice in Europe. The survey was available in English and, for patients/carers, in eight additional languages, disseminated between May 2022 and May 2023. Ethics committee approval was obtained (116_CEIPC/2022_IPC). Results: A total of 1526 patients, 145 carers, 354 nurses, and 291 physicians (96% rheumatologists), from 26 European countries participated. Only 28% of patients had a PE with nurse when starting oral MTX, with a slight increase to 42% for the subcutaneous form, with variations across Europe (Northern=69%, Eastern=52%, Western=50%, Southern=23%). Patients’ perspectives align with physicians, whereas nurses reported higher access rates. Around 77% of patients had/have concerns about side effects, which were discussed with health professionals in 69% of the cases, though 46% of these concerns remained unresolved. The priority ranking of topics to be addressed in PE was similar overall for the three subgroups. Conclusion: PE and support regarding MTX are unequal across Europe and can be improved by offering opportunities to clarify concerns through more access to nursing consultations. There is an overall agreement between patients and clinicians regarding key areas of education, although a tailored approach is required.