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A New Approach to Clinical Care of Juvenile Idiopathic Arthritis: The Juvenile Arthritis Multidimensional Assessment Report
To develop and test a new multidimensional questionnaire for assessment of children with juvenile idiopathic arthritis (JIA) in standard clinical care. The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) includes 15 parent or patient-centered measures or items that assess well-being, p...
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Published in: | Journal of rheumatology 2011-05, Vol.38 (5), p.938-953 |
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container_title | Journal of rheumatology |
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creator | FILOCAMO, Giovanni CONSOLARO, Alessandro GUSEINOVA, Dinara MASALA, Ester VIOLA, Stefania MARTINI, Alberto RAVELLI, Angelo SCHIAPPAPIETRA, Benedetta DALPRA, Sara LATTANZI, Bianca MAGNI-MANZONI, Silvia RUPERTO, Nicolino PISTORIO, Angela PEDERZOLI, Silvia CIVINO, Adele |
description | To develop and test a new multidimensional questionnaire for assessment of children with juvenile idiopathic arthritis (JIA) in standard clinical care.
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, extraarticular 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.
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.
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. |
doi_str_mv | 10.3899/jrheum.100930 |
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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, extraarticular 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.
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.
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.</description><identifier>ISSN: 0315-162X</identifier><identifier>EISSN: 1499-2752</identifier><identifier>DOI: 10.3899/jrheum.100930</identifier><identifier>PMID: 21362761</identifier><identifier>CODEN: JRHUA9</identifier><language>eng</language><publisher>Toronto, ON: Journal of Rheumatology Publishing</publisher><subject>Ambulatory Care ; Arthritis, Juvenile - therapy ; Biological and medical sciences ; Child ; Diseases of the osteoarticular system ; Female ; Humans ; Inflammatory joint diseases ; Male ; Medical sciences ; Needs Assessment ; Parents ; Quality of Life ; Self Report ; Surveys and Questionnaires</subject><ispartof>Journal of rheumatology, 2011-05, Vol.38 (5), p.938-953</ispartof><rights>2015 INIST-CNRS</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c361t-fc0a1fb5af92266b4f411fea445edde177f2690b778892165c8b925cf35c33f3</citedby><cites>FETCH-LOGICAL-c361t-fc0a1fb5af92266b4f411fea445edde177f2690b778892165c8b925cf35c33f3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=24190776$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/21362761$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>FILOCAMO, Giovanni</creatorcontrib><creatorcontrib>CONSOLARO, Alessandro</creatorcontrib><creatorcontrib>GUSEINOVA, Dinara</creatorcontrib><creatorcontrib>MASALA, Ester</creatorcontrib><creatorcontrib>VIOLA, Stefania</creatorcontrib><creatorcontrib>MARTINI, Alberto</creatorcontrib><creatorcontrib>RAVELLI, Angelo</creatorcontrib><creatorcontrib>SCHIAPPAPIETRA, Benedetta</creatorcontrib><creatorcontrib>DALPRA, Sara</creatorcontrib><creatorcontrib>LATTANZI, Bianca</creatorcontrib><creatorcontrib>MAGNI-MANZONI, Silvia</creatorcontrib><creatorcontrib>RUPERTO, Nicolino</creatorcontrib><creatorcontrib>PISTORIO, Angela</creatorcontrib><creatorcontrib>PEDERZOLI, Silvia</creatorcontrib><creatorcontrib>CIVINO, Adele</creatorcontrib><title>A New Approach to Clinical Care of Juvenile Idiopathic Arthritis: The Juvenile Arthritis Multidimensional Assessment Report</title><title>Journal of rheumatology</title><addtitle>J Rheumatol</addtitle><description>To develop and test a new multidimensional questionnaire for assessment of children with juvenile idiopathic arthritis (JIA) in standard clinical care.
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, extraarticular 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.
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.
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.</description><subject>Ambulatory Care</subject><subject>Arthritis, Juvenile - therapy</subject><subject>Biological and medical sciences</subject><subject>Child</subject><subject>Diseases of the osteoarticular system</subject><subject>Female</subject><subject>Humans</subject><subject>Inflammatory joint diseases</subject><subject>Male</subject><subject>Medical sciences</subject><subject>Needs Assessment</subject><subject>Parents</subject><subject>Quality of Life</subject><subject>Self Report</subject><subject>Surveys and Questionnaires</subject><issn>0315-162X</issn><issn>1499-2752</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2011</creationdate><recordtype>article</recordtype><recordid>eNpF0M1LHDEcxvEgiq62R6-Si_Q027xNMultWGy1qIWyh96GTOYXJsu8NclYiv98p-y6nkLChwfyReiakjUvtP68Cy3M_ZoSojk5QSsqtM6YytkpWhFO84xK9usCXca4I4RKIYtzdMEol0xJukKvJX6GP7icpjAa2-I04k3nB29NhzcmAB4d_j6_wOA7wA-NHyeTWm9xGVIbfPLxC9628E6O7_hp7pJvfA9D9OOwzJUxQozLPeGfMI0hfUBnznQRPh7OK7T9erfd3GePP749bMrHzHJJU-YsMdTVuXGaMSlr4QSlDowQOTQNUKUck5rUShWFZlTmtqg1y63jueXc8Sv0aT-7fPH3DDFVvY8Wus4MMM6xKqRQBRMFW2S2lzaMMQZw1RR8b8LfipLqf-1qX7va1178zWF5rntojvot7wJuD8DEpagLZrA-vjtBNVFK8n97Moqf</recordid><startdate>20110501</startdate><enddate>20110501</enddate><creator>FILOCAMO, Giovanni</creator><creator>CONSOLARO, Alessandro</creator><creator>GUSEINOVA, Dinara</creator><creator>MASALA, Ester</creator><creator>VIOLA, Stefania</creator><creator>MARTINI, Alberto</creator><creator>RAVELLI, Angelo</creator><creator>SCHIAPPAPIETRA, Benedetta</creator><creator>DALPRA, Sara</creator><creator>LATTANZI, Bianca</creator><creator>MAGNI-MANZONI, Silvia</creator><creator>RUPERTO, Nicolino</creator><creator>PISTORIO, Angela</creator><creator>PEDERZOLI, Silvia</creator><creator>CIVINO, Adele</creator><general>Journal of Rheumatology Publishing</general><scope>IQODW</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope></search><sort><creationdate>20110501</creationdate><title>A New Approach to Clinical Care of Juvenile Idiopathic Arthritis: The Juvenile Arthritis Multidimensional Assessment Report</title><author>FILOCAMO, Giovanni ; CONSOLARO, Alessandro ; GUSEINOVA, Dinara ; MASALA, Ester ; VIOLA, Stefania ; MARTINI, Alberto ; RAVELLI, Angelo ; SCHIAPPAPIETRA, Benedetta ; DALPRA, Sara ; LATTANZI, Bianca ; MAGNI-MANZONI, Silvia ; RUPERTO, Nicolino ; PISTORIO, Angela ; PEDERZOLI, Silvia ; CIVINO, Adele</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c361t-fc0a1fb5af92266b4f411fea445edde177f2690b778892165c8b925cf35c33f3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2011</creationdate><topic>Ambulatory Care</topic><topic>Arthritis, Juvenile - therapy</topic><topic>Biological and medical sciences</topic><topic>Child</topic><topic>Diseases of the osteoarticular system</topic><topic>Female</topic><topic>Humans</topic><topic>Inflammatory joint diseases</topic><topic>Male</topic><topic>Medical sciences</topic><topic>Needs Assessment</topic><topic>Parents</topic><topic>Quality of Life</topic><topic>Self Report</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>FILOCAMO, Giovanni</creatorcontrib><creatorcontrib>CONSOLARO, Alessandro</creatorcontrib><creatorcontrib>GUSEINOVA, Dinara</creatorcontrib><creatorcontrib>MASALA, Ester</creatorcontrib><creatorcontrib>VIOLA, Stefania</creatorcontrib><creatorcontrib>MARTINI, Alberto</creatorcontrib><creatorcontrib>RAVELLI, Angelo</creatorcontrib><creatorcontrib>SCHIAPPAPIETRA, Benedetta</creatorcontrib><creatorcontrib>DALPRA, Sara</creatorcontrib><creatorcontrib>LATTANZI, Bianca</creatorcontrib><creatorcontrib>MAGNI-MANZONI, Silvia</creatorcontrib><creatorcontrib>RUPERTO, Nicolino</creatorcontrib><creatorcontrib>PISTORIO, Angela</creatorcontrib><creatorcontrib>PEDERZOLI, Silvia</creatorcontrib><creatorcontrib>CIVINO, Adele</creatorcontrib><collection>Pascal-Francis</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of rheumatology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>FILOCAMO, Giovanni</au><au>CONSOLARO, Alessandro</au><au>GUSEINOVA, Dinara</au><au>MASALA, Ester</au><au>VIOLA, Stefania</au><au>MARTINI, Alberto</au><au>RAVELLI, Angelo</au><au>SCHIAPPAPIETRA, Benedetta</au><au>DALPRA, Sara</au><au>LATTANZI, Bianca</au><au>MAGNI-MANZONI, Silvia</au><au>RUPERTO, Nicolino</au><au>PISTORIO, Angela</au><au>PEDERZOLI, Silvia</au><au>CIVINO, Adele</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>A New Approach to Clinical Care of Juvenile Idiopathic Arthritis: The Juvenile Arthritis Multidimensional Assessment Report</atitle><jtitle>Journal of rheumatology</jtitle><addtitle>J Rheumatol</addtitle><date>2011-05-01</date><risdate>2011</risdate><volume>38</volume><issue>5</issue><spage>938</spage><epage>953</epage><pages>938-953</pages><issn>0315-162X</issn><eissn>1499-2752</eissn><coden>JRHUA9</coden><abstract>To develop and test a new multidimensional questionnaire for assessment of children with juvenile idiopathic arthritis (JIA) in standard clinical care.
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, extraarticular 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.
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.
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.</abstract><cop>Toronto, ON</cop><pub>Journal of Rheumatology Publishing</pub><pmid>21362761</pmid><doi>10.3899/jrheum.100930</doi><tpages>16</tpages><oa>free_for_read</oa></addata></record> |
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subjects | Ambulatory Care Arthritis, Juvenile - therapy Biological and medical sciences Child Diseases of the osteoarticular system Female Humans Inflammatory joint diseases Male Medical sciences Needs Assessment Parents Quality of Life Self Report Surveys and Questionnaires |
title | A New Approach to Clinical Care of Juvenile Idiopathic Arthritis: The Juvenile Arthritis Multidimensional Assessment Report |
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