Artritis idiopática juvenil en el adulto joven. Metodología, objetivos y datos iniciales del registro JUVENSER

Reumatología Clínica - Tập 19 - Trang 328-333 - 2023
Juan José Bethencourt-Baute1, Nuria Montero2, Andrea M. Zacarias3, Juan Carlos Nieto4, Mireia López-Corbeto5, Alina Boteanu6, Marta Medrano7, Gisela Díaz-Cordovés Rego8, Carmen Vargas-Lebron9, Sergio Machín-García10, Lorena Expósito1, Ana Paula Cacheda11, Pilar Bernabeu12, Raúl Veroz-González13, Olaia Fernández14, Eugenia Enriquez Merayo15, Vicenç Torrente-Segarra16, María Dolores Fernández-Alba17, María Luz Gamir6, Juan Carlos López-Robledillo18
1Servicio de Reumatología. Hospital Universitario de Canarias. Santa Cruz de Tenerife. España
2Unidad de Investigación, Sociedad Española de Reumatología, Madrid, España
3Unidad de Transición, Hospital Sant Joan de Déu. Hospital Clínic de Barcelona, Barcelona, España
4Servicio de Reumatología, Hospital General Gregorio Marañón, Madrid, España
5Servicio de Reumatología, Hospital Vall d’Hebron, Barcelona, España
6Servicio de Reumatología, Hospital Universitario Ramón y Cajal, Madrid, España
7Servicio de Reumatología, Hospital Universitario Miguel Servet, Zaragoza, España
8Servicio de Reumatología, Hospital Regional Universitario de Málaga, Málaga, España
9Servicio de Reumatología, Hospital Universitario Virgen Macarena, Sevilla, España
10Servicio de Reumatología, Complejo Hospitalario Insular Materno Infantil, Las Palmas de Gran Canaria, España
11Servicio de Reumatología, Hospital Universitario Son Llàtzer, Mallorca, España
12Servicio de Reumatología, Hospital General Universitario de Alicante, Alicante, España
13Servicio de Reumatología, Hospital de Mérida, Mérida, España
14Servicio de Reumatología, Hospital Universitario de Basurto, Bilbao, España
15Servicio de Reumatología, Hospital Universitario Doce de Octubre, Madrid, España
16Servicio de Reumatología, Hospital Comarcal Alt Penedés Garraf, Vilafranca del Penedès, España
17Servicio de Reumatología, Hospital Universitario Virgen del Rocío, Sevilla, España
18Servicio de Reumatología, Hospital Infantil Universitario Niño Jesús, Madrid, España

Tài liệu tham khảo

Merino, 2005, Evaluation of revised International League of Associations for Rheumatology classification criteria for juvenile idiopathic arthritis in Spanish children (Edmonton 2001), J Rheumatol., 32, 559 Petty, 2004, International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001, J Rheumatol., 31, 390 Stoll, 2008, Comparison of Vancouver and International League of Associations for rheumatology classification criteria for juvenile psoriatic arthritis, Arthritis Rheum., 59, 51, 10.1002/art.23240 Tong, 2013, Consumer perspectives on pediatric rheumatology care and service delivery: a qualitative study, J Clin Rheumatol, 19, 234, 10.1097/RHU.0b013e31829d4e82 Young adults with arthritis: meeting their transitional needs - PubMed [Internet]. [consultado 14 Ago 2021]. Disponible en: https://pubmed.ncbi.nlm.nih.gov/8624630/ Ardoin, 2018, Transitions in Rheumatic Disease: Pediatric to Adult Care, Pediatr Clin North Am., 65, 867, 10.1016/j.pcl.2018.04.007 Conti, 2018, Patients with juvenile idiopathic arthritis become adults: the role of transitional care, Clin Exp Rheumatol., 36, 1086 Southall, 2000, Pediatrics., 106, 1054, 10.1542/peds.106.5.1054 McErlane, 2013, Biologic treatment response among adults with juvenile idiopathic arthritis: results from the British Society for Rheumatology Biologics Register, Rheumatology (Oxford)., 52, 1905, 10.1093/rheumatology/ket248 Vidqvist, 2013, Disease activity of idiopathic juvenile arthritis continues through adolescence despite the use of biologic therapies, Rheumatology (Oxford)., 52, 1999, 10.1093/rheumatology/ket256 Niewerth, 2014, [Therapy of juvenile idiopathic arthritis in early adulthood with biologics: transition from pediatric to adult care], Z Rheumatol., 73, 532, 10.1007/s00393-014-1378-z Hooper, 2013, Malignancies in children and young adults on etanercept: summary of cases from clinical trials and post marketing reports, Pediatr Rheumatol Online J., 11, 35, 10.1186/1546-0096-11-35 Minden, 2012, Long-term outcome of patients with JIA treated with etanercept, results of the biologic register JuMBO, Rheumatology (Oxford)., 51, 1407, 10.1093/rheumatology/kes019 Ruperto, 2010, Long-term safety and efficacy of abatacept in children with juvenile idiopathic arthritis, Arthritis Rheum., 62, 1792, 10.1002/art.27431 Ammerlaan, 2013, An urge for change: transitional care for young adults with juvenile idiopathic arthritis, Patient Educ Couns., 92, 127, 10.1016/j.pec.2013.02.006 Calvo, 2015, Consensus of the Spanish society of pediatric rheumatology for transition management from pediatric to adult care in rheumatic patients with childhood onset, Rheumatol Int., 35, 1615, 10.1007/s00296-015-3273-6 Malviya, 2012, The relationships between adult juvenile idiopathic arthritis and employment, Arthritis Rheum., 64, 3016, 10.1002/art.34499 Secor-Turner, 2011, Living with juvenile arthritis: adolescents’ challenges and experiences, J Pediatr Health Care, 25, 302, 10.1016/j.pedhc.2010.06.004 Packham, 2004, Overview of the psychosocial concerns of young adults with juvenile arthritis, Musculoskeletal Care., 2, 6, 10.1002/msc.52 Archenholtz, 2001, Lower level of education in young adults with arthritis starting in the early adulthood, Scand J Rheumatol., 30, 353, 10.1080/030097401317148552 Castrejón, 2012, [Transitional care programs for patients with rheumatic diseases: review of the literature], Reumatol Clin., 8, 20, 10.1016/j.reuma.2011.06.008 Luque Ramos, 2017, Transition to adult rheumatology care is necessary to maintain DMARD therapy in young people with juvenile idiopathic arthritis, Semin Arthritis Rheum., 47, 269, 10.1016/j.semarthrit.2017.05.003 Stagi, 2014, Comparison of bone mass and quality determinants in adolescents and young adults with juvenile systemic lupus erythematosus (JSLE) and juvenile idiopathic arthritis (JIA), Lupus., 23, 1392, 10.1177/0961203314543916 Stagi, 2010, Cross-sectional and longitudinal evaluation of bone mass in children and young adults with juvenile idiopathic arthritis: the role of bone mass determinants in a large cohort of patients, J Rheumatol., 37, 1935, 10.3899/jrheum.091241 Hämäläinen, 2010, Bone mineral content in young adults with active or inactive juvenile idiopathic arthritis and in controls, Scand J Rheumatol., 39, 219, 10.3109/03009740903337885 Coulson, 2013, Cardiovascular risk in juvenile idiopathic arthritis, Rheumatology (Oxford)., 52, 1163, 10.1093/rheumatology/ket106 NORMATIVA-PROYECTOS-SER.docx [Internet]. [consultado 14 Ene 2023]. Disponible en: https://view.officeapps.live.com/op/view.aspx?src=https%3A%2F%2Fwww.ser.es%2Fwp-content%2Fuploads%2F2018%2F06%2FNORMATIVA-PROYECTOS-SER.docx&wdOrigin=BROWSELINK Tollisen, 2021, Treatment Satisfaction With and Adherence to Disease-Modifying Antirheumatic Drugs in Adult Patients With Juvenile Idiopathic Arthritis, Arthritis Care Res., 73, 221, 10.1002/acr.24113 Glerup, 2020, Long-Term Outcomes in Juvenile Idiopathic Arthritis: Eighteen Years of Follow-Up in the Population-Based Nordic Juvenile Idiopathic Arthritis Cohort, Arthritis Care Res., 72, 507, 10.1002/acr.23853 Selvaag, 2016, Disease progression into adulthood and predictors of long-term active disease in juvenile idiopathic arthritis, Ann Rheum Dis., 75, 190, 10.1136/annrheumdis-2014-206034