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1.
Rheumatol Int ; 38(Suppl 1): 91-98, 2018 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-29637328

RESUMEN

The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Castilian Spanish language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the three Likert assumptions, floor/ceiling effects, internal consistency, Cronbach's alpha, interscale correlations, test-retest reliability and construct validity (convergent and discriminant validity). A total of 526 JIA patients (8.6% systemic, 49.4% oligoarticular, 18.2% RF negative polyarthritis, 23.8% other categories) and 78 healthy children, were enrolled in six centres. The JAMAR components discriminated well healthy subjects from JIA patients. All JAMAR components revealed good psychometric performances. In conclusion, the Castilian Spanish version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practise and clinical research.


Asunto(s)
Artritis Juvenil/diagnóstico , Evaluación de la Discapacidad , Medición de Resultados Informados por el Paciente , Reumatología/métodos , Adolescente , Edad de Inicio , Artritis Juvenil/fisiopatología , Artritis Juvenil/psicología , Artritis Juvenil/terapia , Estudios de Casos y Controles , Niño , Preescolar , Características Culturales , Femenino , Estado de Salud , Humanos , Masculino , Padres/psicología , Pacientes/psicología , Valor Predictivo de las Pruebas , Pronóstico , Psicometría , Calidad de Vida , Reproducibilidad de los Resultados , Traducción
2.
Pediatr Rheumatol Online J ; 18(1): 20, 2020 Feb 24.
Artículo en Inglés | MEDLINE | ID: mdl-32093703

RESUMEN

BACKGROUND: Osteoporosis incidence in children is increasing due to the increased survival rate of patients suffering from chronic diseases and the increased use of drugs that can damage bones. Recent changes made to the definition of childhood osteoporosis, along with the lack of guidelines or national consensuses regarding its diagnosis and treatment, have resulted in a wide variability in the approaches used to treat this disease. For these reasons, the Osteogenesis Imperfecta and Childhood Osteoporosis Working Group of the Spanish Society of Pediatric Rheumatology has sounded the need for developing guidelines to standardize clinical practice with regard to this pathology. METHODS: An expert panel comprised of 6 pediatricians and 5 rheumatologists carried out a qualitative literature review and provided recommendations based on evidence, when that was available, or on their own experience. The level of evidence was determined for each section using the Oxford Centre for Evidence-based Medicine (CEBM) system. A Delphi survey was conducted for those recommendations with an evidence level of IV or V. This survey was sent to all members of the SERPE. All recommendations that had a level of agreement higher or equal to 70% were included. RESULTS: Fifty-one recommendations, categorized into eight sections, were obtained. Twenty-four of them presented an evidence level 4 or 5, and therefore a Delphi survey was conducted. This was submitted electronically and received a response rate of 40%. All recommendations submitted to the Delphi round obtained a level of agreement of 70% or higher and were therefore accepted. CONCLUSION: In summary, we present herein guidelines for the prevention, diagnosis and treatment of secondary childhood osteoporosis based on the available evidence and expert clinical experience. We believe it can serve as a useful tool that will contribute to the standardization of clinical practice for this pathology. Prophylactic measures, early diagnosis and a proper therapeutic approach are essential to improving bone health, not only in children and adolescents, but also in the adults they will become in the future.


Asunto(s)
Conservadores de la Densidad Ósea/uso terapéutico , Calcio/uso terapéutico , Difosfonatos/uso terapéutico , Osteoporosis/diagnóstico , Osteoporosis/tratamiento farmacológico , Fracturas Osteoporóticas/diagnóstico , Fracturas Osteoporóticas/prevención & control , Vitamina D/uso terapéutico , Absorciometría de Fotón , Enfermedades Autoinmunes/complicaciones , Fibrosis Quística/complicaciones , Técnica Delphi , Enfermedades del Sistema Endocrino/complicaciones , Epidermólisis Ampollosa/complicaciones , Glucocorticoides/efectos adversos , Infecciones por VIH/complicaciones , Enfermedades Hematológicas/complicaciones , Humanos , Enfermedad Iatrogénica , Enfermedades Renales/complicaciones , Errores Innatos del Metabolismo/complicaciones , Enfermedades Neuromusculares/complicaciones , Osteoporosis/etiología , Fracturas Osteoporóticas/etiología , Guías de Práctica Clínica como Asunto , Radioterapia/efectos adversos
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