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Initial Benchmarking of the Quality of Medical Care in Childhood‐Onset Systemic Lupus Erythematosus
Author(s) -
Mina Rina,
Harris Julia G.,
KleinGitelman Marisa S.,
Appenzeller Simone,
Centeville Maraisa,
Eskra Diane,
Huggins Jennifer L.,
Johnson Anne L.,
Khubchandani Raju,
Khandekar Prachi,
Lee Jiha,
Liu Hai Mei,
Pendl Joshua D.,
Silva Clovis A.,
Silva Marco F.,
Zaal Ahmad I.,
DeWitt Esi Morgan,
Ardoin Stacy P.,
Brunner Hermine I.
Publication year - 2016
Publication title -
arthritis care and research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.032
H-Index - 163
eISSN - 2151-4658
pISSN - 2151-464X
DOI - 10.1002/acr.22666
Subject(s) - medicine , rheumatology , pediatrics , systemic lupus erythematosus , lupus nephritis , health care , early childhood , vaccination , immunology , disease , economics , economic growth , psychology , developmental psychology
Objective To assess the quality of medical care in childhood‐onset systemic lupus erythematosus (SLE) at tertiary pediatric rheumatology centers as measured by observance of SLE quality indicators (SLE‐QIs). Methods International consensus has been achieved for childhood‐onset SLE‐QIs capturing medical care provision in 9 domains: diagnostic testing, education of cardiovascular (CV) risk and lifestyles, lupus nephritis (LN), medication management, bone health, ophthalmologic surveillance, transition, pregnancy, and vaccination. Using medical record information, the level of performance of these childhood‐onset SLE‐QIs was assessed in childhood‐onset SLE populations treated at 4 tertiary pediatric rheumatology centers in the US, 2 in Brazil, and 1 center in India. Results A total of 483 childhood‐onset SLE patients were assessed. Care for the 310 US patients differed markedly for childhood‐onset SLE‐QIs addressing LN, bone health, vaccinations, education on CV risk, and transition planning. Performance of safety blood testing for medications was high at all centers. Despite often similar performance on the childhood‐onset SLE‐QI, access to kidney biopsies was lower in Brazil than in the US. Irrespective of the country of practice, larger centers tended to meet the childhood‐onset SLE‐QIs more often than smaller centers. Conclusion The childhood‐onset SLE‐QIs, evidence‐based minimum standards of medical care, are not consistently met in the US or some other countries outside the US. This has the potential to contribute to suboptimal childhood‐onset SLE outcomes.