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Matthew C Hollander,
Jessica M Sage,
Alexandria J Greenler,
Joshua Pendl,
Tadej Avcin,
Graciela Espada, Michael W Beresford,
Michael Henrickson,
Tsz-Leung Lee,
Marilynn Punaro,
Jennifer Huggins,
Anne M Stevens,
Marisa S Klein-Gitelman,
Hermine I Brunner
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ABSTRACT: Objective:To obtain international consensus around processes that support the delivery of high-quality care to patientswith childhood-onset systemic lupus erythematosus (cSLE) based on current recommendations and scientific evidence. Methods:To identify process quality indicators (QI) for the medical careof children and adolescents with cSLE, we sent twoDelphi questionnairesinternationally to 348physicians who treat these patients. We set consensus at 80% of completed responses.Results: Two hundred and ninety-seven physicians (87%) responded to the first Delphi questionnaire, and 265 physicians (76%)responded to the second questionnaire.The group achieved consensus for 26 QI addressing laboratory testing at diagnosis, health maintenance measures, diagnosis and therapy of lupus nephritis, general preventive strategies, surveillance for medication safety, counseling and evaluation of cardiovascular risk factors, as well as transition planning.Of the 26 process QI for use in cSLE, 11 matchthose established foradults with SLE, nine required modification,and consensus was reached for an additional six QI specific to children. Conclusion: Aninternational consensus for a set of process QI for cSLE was reachedthat consider unique aspects of children with cSLE. The presented set of QI for children and adolescents with cSLE define agreed uponstandards of medical care. © 2013 by the American College of Rheumatology.
Arthritis care & research. 03/2013;
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Archives of Disease in Childhood - Education and Practice 10/2012; · 1.32 Impact Factor
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Rina Mina,
Marisa S Klein-Gitelman,
Angelo Ravelli, Michael W Beresford,
Tadej Avcin,
Graciela Espada,
B Anne Eberhard,
Laura E Schanberg,
Kathleen M O'Neil,
Clovis A Silva,
Gloria C Higgins,
Karen Onel,
Nora G Singer,
Emily von Scheven,
Lisa F Imundo,
Shannen Nelson,
Edward H Giannini,
Hermine I Brunner
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ABSTRACT: To define inactive disease (ID) and clinical remission (CR) and to delineate variables that can be used to measure ID/CR in childhood-onset systemic lupus erythematosus (cSLE).
Delphi questionnaires were sent to an international group of pediatric rheumatologists. Respondents provided information about variables to be used in future algorithms to measure ID/CR. The usefulness of these variables was assessed in 35 children with ID and 31 children with minimally active lupus (MAL).
While ID reflects cSLE status at a specific point in time, CR requires the presence of ID for >6 months and considers treatment. There was consensus that patients in ID/CR can have <2 mild nonlimiting symptoms (i.e., fatigue, arthralgia, headaches, or myalgia) but not Raynaud's phenomenon, chest pain, or objective physical signs of cSLE; antinuclear antibody positivity and erythrocyte sedimentation rate elevation can be present. Complete blood count, renal function testing, and complement C3 all must be within the normal range. Based on consensus, only damage-related laboratory or clinical findings of cSLE are permissible with ID. The above parameters were suitable to differentiate children with ID/CR from those with MAL (area under the receiver operating characteristic curve >0.85). Disease activity scores with or without the physician global assessment of disease activity and patient symptoms were well suited to differentiate children with ID from those with MAL.
Consensus has been reached on common definitions of ID/CR with cSLE and relevant patient characteristics with ID/CR. Further studies must assess the usefulness of the data-driven candidate criteria for ID in cSLE.
Arthritis care & research. 01/2012; 64(5):683-93.
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Hermine I Brunner,
Rina Mina,
Clarissa Pilkington, Michael W Beresford,
Andreas Reiff,
Deborah M Levy,
Lori B Tucker,
B Anne Eberhard,
Angelo Ravelli,
Laura E Schanberg,
Claudia Saad-Magalhaes,
Gloria C Higgins,
Karen Onel,
Nora G Singer,
Emily von Scheven,
Lukasz Itert,
Marisa S Klein-Gitelman,
Marilynn Punaro,
Jun Ying,
Edward H Giannini
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ABSTRACT: To develop widely acceptable preliminary criteria of global flare for childhood-onset systemic lupus erythematosus (cSLE).
Pediatric rheumatologists (n = 138) rated a total of 358 unique patient profiles with information about the cSLE flare descriptors from 2 consecutive visits: patient global assessment of well-being, physician global assessment of disease activity (MD-global), health-related quality of life, anti-double-stranded DNA antibodies, disease activity index scores, protein:creatinine (P:C) ratio, complement levels, and erythrocyte sedimentation rate (ESR). Based on 2,996 rater responses about the course of cSLE (baseline versus followup), the accuracy (sensitivity, specificity, and area under the receiver operating characteristic curve) of candidate flare criteria was assessed. An international consensus conference was held to rank these candidate flare criteria as per the American College of Rheumatology recommendations for the development and validation of criteria sets.
The highest-ranked candidate criteria considered absolute changes (Δ) of the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) or British Isles Lupus Assessment Group (BILAG), MD-global, P:C ratio, and ESR; flare scores can be calculated (0.5 × ΔSLEDAI + 0.45 × ΔP:C ratio + 0.5 × ΔMD-global + 0.02 × ΔESR), where values of ≥1.04 are reflective of a flare. Similarly, BILAG-based flare scores (0.4 × ΔBILAG + 0.65 × ΔP:C ratio + 0.5 × ΔMD-global + 0.02 × ΔESR) of ≥1.15 were diagnostic of a flare. Flare scores increased with flare severity.
Consensus has been reached on preliminary criteria for global flares in cSLE. Further validation studies are needed to confirm the usefulness of the cSLE flare criteria in research and for clinical care.
Arthritis care & research. 05/2011; 63(9):1213-23.
