Patients’, caregivers and clinicians’ perspectives on education and support about methotrexate: survey to 26 European Countries
Authors
Cristiano Matos; Polly Livermore; Mariana Ortiz-Piña; Khadija El Aoufy; Kristina Buerki; Agnes Ágoston-Szabó; Darja Batšinskaja; Jana Melicharová; Marie-Louise Karlsson; Karlien Claes; Ana Isabel Rodriguez Vargas; Ellen Moholt; Ane Ludvigsen; Una Martin; Ulrike Erstling ; Angela Camon ; Ana Pais; Mikaella Konstantinou; Myrto Nikoloudaki; Souzi Makri; Bruno Silva; Cláudia Paiva; Elena Nikiphorou; Andrea Marques; Ricardo J. O. Ferreira;
Keywords
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.
Cristiano Matos
Instituto Politécnico de Coimbra
Polly Livermore
Great Ormond Street Children’s Hospital NHS Foundation Trust
Mariana Ortiz-Piña
Rey Juan Carlos University
Khadija El Aoufy
University of Florence
Kristina Buerki
Zurich University Hospital
Agnes Ágoston-Szabó
University of Pécs
Darja Batšinskaja
Tallinn East-Central Hospital
Jana Melicharová
Institute of Rheumatology
Marie-Louise Karlsson
Karolinska Institute
Karlien Claes
University Hospital Ghent
Ana Isabel Rodriguez Vargas
Hospital Universitario de Canarias
Ellen Moholt
Diakonhjemmet Hospital
Ane Ludvigsen
Rigshospitalet/Glostrup Hospital
Una Martin
University Hospital Waterford
Ulrike Erstling
Fachverband Rheumatologische Fachassistenz e.V
Angela Camon
Midland Regional Hospital
Ana Pais
Associação Nacional de Doentes com Artrites e Reumatismos da Infância
Mikaella Konstantinou
General Hospital of Nicosia
Myrto Nikoloudaki
University General Hospital of Heraklion
Souzi Makri
European Alliance of Associations for Rheumatology
Bruno Silva
“Associação Rodinhas de Portuga (A.R.P.)”
Cláudia Paiva
Unidade Local de Saúde de Coimbra
Elena Nikiphorou
King’s College London
Andrea Marques
Nursing School of Coimbra
Ricardo J. O. Ferreira
Nursing School of Lisbon (ESEL)
Instituto Politécnico de Coimbra
Polly Livermore
Great Ormond Street Children’s Hospital NHS Foundation Trust
Mariana Ortiz-Piña
Rey Juan Carlos University
Khadija El Aoufy
University of Florence
Kristina Buerki
Zurich University Hospital
Agnes Ágoston-Szabó
University of Pécs
Darja Batšinskaja
Tallinn East-Central Hospital
Jana Melicharová
Institute of Rheumatology
Marie-Louise Karlsson
Karolinska Institute
Karlien Claes
University Hospital Ghent
Ana Isabel Rodriguez Vargas
Hospital Universitario de Canarias
Ellen Moholt
Diakonhjemmet Hospital
Ane Ludvigsen
Rigshospitalet/Glostrup Hospital
Una Martin
University Hospital Waterford
Ulrike Erstling
Fachverband Rheumatologische Fachassistenz e.V
Angela Camon
Midland Regional Hospital
Ana Pais
Associação Nacional de Doentes com Artrites e Reumatismos da Infância
Mikaella Konstantinou
General Hospital of Nicosia
Myrto Nikoloudaki
University General Hospital of Heraklion
Souzi Makri
European Alliance of Associations for Rheumatology
Bruno Silva
“Associação Rodinhas de Portuga (A.R.P.)”
Cláudia Paiva
Unidade Local de Saúde de Coimbra
Elena Nikiphorou
King’s College London
Andrea Marques
Nursing School of Coimbra
Ricardo J. O. Ferreira
Nursing School of Lisbon (ESEL)