A New Approach to Clinical Care of Juvenile Idiopathic Arthritis: The juvenile Arthritis Multidimensional Assessment Report

被引:147
作者
Filocamo, Giovanni [1 ]
Consolaro, Alessandro [1 ]
Schiappapietra, Benedetta [1 ]
Dalpra, Sara [1 ]
Lattanzi, Bianca [1 ]
Magni-Manzoni, Silvia [2 ]
Ruperto, Nicolino [1 ]
Pistorio, Angela [1 ]
Pederzoli, Silvia [1 ]
Civino, Adele [3 ]
Guseinova, Dinara [1 ]
Masala, Ester [1 ]
Viola, Stefania [1 ]
Martini, Alberto [1 ]
Ravelli, Angelo [1 ]
机构
[1] Univ Genoa, Ist Ricovero & Cura Carattere Sci G Gaslini, Genoa, Italy
[2] Fdn Policlin S Matteo, Ist Ricovero & Cura Carattere Sci, Pavia, Italy
[3] Azienda Osped Card G Panico, Tricase, Italy
关键词
JUVENILE IDIOPATHIC ARTHRITIS; OUTCOME RESEARCH; PATIENT PERSPECTIVE; QUALITY-OF-LIFE; PEDIATRIC RHEUMATIC-DISEASES; DISABILITY MEASUREMENT TOOL; HEALTH-STATUS; FUNCTIONAL STATUS; CHILDREN; VALIDATION; PARENTS; TRIALS; INDEX;
D O I
10.3899/jrheum.100930
中图分类号
R5 [内科学];
学科分类号
100201 [内科学];
摘要
Objective. To develop and test a new multidimensional questionnaire for assessment of children with juvenile idiopathic arthritis (EA) in standard clinical care. Methods. The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) includes 15 parent or patient-centered measures or items that assess well-being, pain, functional status, health-related quality of life, morning stiffness, disease activity, disease status and course, joint disease, extra-articular symptoms, side effects of medications, therapeutic compliance, and satisfaction with illness outcome. The JAMAR is proposed for use as both a proxy-report and a patient self-report, with the suggested age range of 7-18 years for use as a self-report. From March 2007 to September 2009, the questionnaire was completed by the parents of 618 children with JIA in 1814 visits and by 332 children in 749 visits. Results. The JAMAR was found to be feasible and to possess face and content validity. All parents and children reported that the questionnaire was simple and easy to understand. Completion and scoring appeared to be quick, requiring < 15 minutes. There were very few missing data. Parents' proxy-reported and children's self-reported data were remarkably concordant. The JAMAR provided thorough information for the study patients about recent medical history and current health status. It performed similarly across different children's ages and characterized the level of disease activity and disability well. Conclusion. The development of the JAMAR introduces a new approach in pediatric rheumatology practice. This new questionnaire may help enhance the quality of care of children with JIA. (First Release March 1 2011: J Rheumatol 2011:38:938-53; doi:10.3899/jrheum.100930)
引用
收藏
页码:938 / 953
页数:16
相关论文
共 30 条
[1]
Comparison between children with juvenile idiopathic arthritis and their parents concerning perceived treatment adherence [J].
April, Karine Toupin ;
Feldman, Debbie Ehrmann ;
Platt, Robert W. ;
Duffy, Ciaran M. .
ARTHRITIS & RHEUMATISM-ARTHRITIS CARE & RESEARCH, 2006, 55 (04) :558-563
[2]
Patient-Physician Discordance in Assessments of Global Disease Severity in Rheumatoid Arthritis [J].
Barton, Jennifer L. ;
Imboden, John ;
Graf, Jonathan ;
Glidden, David ;
Yelin, Edward H. ;
Schillinger, Dean .
ARTHRITIS CARE & RESEARCH, 2010, 62 (06) :857-864
[3]
Developing outcome measures for paediatric rheumatic diseases [J].
Brunner, Hermine I. ;
Ravelli, Angelo .
BEST PRACTICE & RESEARCH IN CLINICAL RHEUMATOLOGY, 2009, 23 (05) :609-624
[4]
Health-related quality of life in children with rheumatic diseases [J].
Brunner, HI ;
Giannini, EH .
CURRENT OPINION IN RHEUMATOLOGY, 2003, 15 (05) :602-612
[5]
Consolaro A, 2007, J RHEUMATOL, V34, P1773
[6]
Measurement of health status, functional status, and quality of life in children with juvenile idiopathic arthritis: Clinical science for the pediatrician [J].
Duffy, CM .
PEDIATRIC CLINICS OF NORTH AMERICA, 2005, 52 (02) :359-+
[7]
Duffy CM, 1997, J RHEUMATOL, V24, P738
[8]
Feldman BM, 2000, J RHEUMATOL, V27, P226
[9]
FILOCAMO G, 2009, ANN RHEUM DIS S3, V68, P761
[10]
Development and validation of a new short and simple measure of physical function for juvenile idiopathic arthritis [J].
Filocamo, Giovanni ;
Sztainbok, Flavio ;
Cespedes-Cruz, Adriana ;
Magni-Manzoni, Silvia ;
Pistorio, Angela ;
Viola, Stefania ;
Ruperto, Nicolino ;
Buoncompagni, Antonella ;
Loy, Anna ;
Martini, Alberto ;
Ravelli, Angelo .
ARTHRITIS & RHEUMATISM-ARTHRITIS CARE & RESEARCH, 2007, 57 (06) :913-920