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Abstract Number: 2040

Provisions of Quality Driven Care in Childhood-Onset Systemic Lupus Erythematosus

Matthew C. Hollander1, Jessica M. Sage2, Alexandria J. Greenler2, Tadej Avcin3, Michael W. Beresford4, Graciela Espada5, Marisa S. Klein-Gitelman6, Michael Henrickson7, Tsz-Leung Lee8, Joshua D. Pendl9, Marilynn G. Punaro10, Jennifer L. Huggins11, Anne M. Stevens12 and Hermine Brunner11, 1Division of Rheumatology, Seattle Children's Hospital, Seattle, WA, 2Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 3International Investigator Consortium for MAS Diagnostic Criteria, Ljubljana, Slovenia, 4Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom, 5Rheumatology Section, Childrens Hosp Ricardo Gutierrez, Buenos Aires, Argentina, 6Division of Rheumatology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, 7MLC 4010, Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 8Paediatrics and Adolescent Med, Queen Mary Hospital, Hong Kong, Hong Kong, 9Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 10Pediatric Rheumatology, Texas Scottish Rite Hospital, Dallas, TX, 11Pediatric Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 12Pediatrics, University of Washington, Seattle, WA

Meeting: 2012 ACR/ARHP Annual Meeting

Keywords: Quality of care and systemic lupus erythematosus (SLE)

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Session Information

Title: Quality Measures and Innovations in Practice Management and Care Delivery

Session Type: Abstract Submissions (ACR)

Background/Purpose:  Quality Indicators (QI) are retrospectively measurable elements of practice performance for which there is evidence or consensus that can be used to assess the quality of care provided. Previous QI have been developed for adult systemic lupus erythematosus. This project was the second of two Delphi surveys used to identify QI in childhood-onset systemic lupus erythematosus (cSLE) that could serve as international benchmarks to assess quality of patient care.

Methods: Based on medical literature and a previous Delphi survey, a second survey was created and distributed via email to 348 individuals on the member lists of EULAR, PANLAR, PRINTO, PRES, ACR and CARRA. 265 individuals (76%) responded via online or paper survey, with 173 (65%) participants identifying themselves as pediatric rheumatologists. The survey design included a brief summary of relevant literature for each topic prior to the question. Participants had access to the referenced articles for each question through a hyperlink in the survey. Consensus was set at 80% agreement and blank responses were excluded from the analysis.

Results: Important process QI (IF/THEN statements) addressing the following treatment domains achieved consensus:  bone health, education on cardiovascular risk factors, lupus nephritis and hypertension management, medication management, ophthalmological surveillance, transfer of care, use of chronic steroids in cSLE management, and vaccinations (Table 1).  A substantial amount of support was noted for clinical evaluation of disease activity every 3 months (71%), while the support for safety monitoring for medications was variable. The safety monitoring variables that reached consensus are displayed in Table 2.

Conclusion: Delphi questionnaires are efficient instruments for reaching international consensus for minimal standards of quality care for cSLE.  Additional efforts will help refine items for which there is currently not consensus. The new QI identified through this project can be used to define and standardize best practices for children and adolescents with cSLE across the world. 

Table 1:   Quality indicators for patients with cSLE which yielded at least 80% consensus

Lupus Nephritis and Hypertension Management

1) IF a cSLE patient without known lupus nephritis has developed daily proteinuria of >500 mg or clinically relevant worsening of GFR/urinary sediment, THEN a kidney biopsy should be performed.

2) IF a patient has known lupus nephritis, THEN a clinical assessment for cSLE should occur at least every 3 months regardless of disease activity.

3) IF a cSLE patient has lupus nephritis plus evidence of ongoing proteinuria >500mg/day, THEN an angiotensin-converting enzyme (ACE) inhibitor or angiotensin receptor blockers (ARB) should be prescribed, unless there are contraindications.

4) IF a patient has LN and/or hypertension, THEN disease co-management with a nephrologist should be considered.

Medication Management

5) IF a patient has cSLE, THEN antimalarial therapy should be prescribed, unless there are contraindications.

6) IF a cSLE patient is receiving a dose of steroids not acceptable for chronic use, then an attempt should be made to taper steroids.

7) IF a patient with cSLE is unable to decrease the dose of steroids acceptable for chronic use, THEN the addition of a steroid-sparing agent, or an increased dose of an existing steroid-sparing agent should be considered.

8) IF a cSLE patient is treated with medications, THEN laboratory surveillance for medication safety should be done at regular intervals. (Table 2)

Vaccinations

9) IF a patient has cSLE, THEN vaccination against influenza and encapsulated organisms should be prescribed, unless there are contraindications.

Bone Health with cSLE

10) IF a patient has received chronic systemic steroids, THEN the patient should have bone mineral density testing documented in the medical record.

11) IF baseline bone mineral density testing is outside of normal limits (Z-score ≤-2.0), THEN bone mineral density should be re-measured after one year.

12) IF a patient is on any steroid therapy, THEN calcium and vitamin supplementation should be recommended after 3 months.

Ophthalmological Surveillance

13) IF a cSLE patient is treated with corticosteroids, THEN an eye screening does not need to occur prior to treatment.

14) IF a cSLE patient is treated with corticosteroids, THEN eye screening should be done at least annually.

15) IF a cSLE patient is treated with antimalarial therapy, THEN eye screening should be done at least annually.

Transfer of Care with cSLE

16) IF an adolescent has cSLE, THEN a transition plan should be carefully designed to facilitate transfer of care to the appropriate adult health-care providers.

Education on Cardiovascular Risk Factors

17) IF a patient has cSLE, THEN education about cardiovascular risk factors should occur in regular intervals with the parent and the patient age 13 years or older.

 

Table 2: Medication Monitoring Table

IF a cSLE patient is treated with medications, THEN laboratory surveillance for medication safety should be done regularly as is documented below:

Interval

AZA

NSAIDS

HCQ

1-monthly

IV CTX

MMF/MPA

3-monthly CTX

Cyclo-A

Prednisone

Rituximab

TNF-antagonists

Baseline

CBC

Liver

 

 

CBC

Liver

 

CBC

CBC

Every month

 

CBC

Liver

Renal

 

 

 

Every 3 months

CBC Liver

 

CBC

Liver

Renal

CBC

CBC

Every 6 months

Renal

Liver

Renal

 

 

Liver

Every 9 months

 

UA

 

Every 12 months

CBC

CBC

Renal

Liver

Liver

Renal

AZA=azathioprine; HCQ= hydroxchloroquine; CTX=cyclophosphamide; MMF/MPA=mycophenolate mofetil/mycophenolic acid; Cyclo-A=cyclosporine-A; CBC=complete blood count and differential; Liver=liver function tests; Renal=renal function tests; UA=urinary protein excretion


Disclosure:

M. C. Hollander,
None;

J. M. Sage,
None;

A. J. Greenler,
None;

T. Avcin,
None;

M. W. Beresford,
None;

G. Espada,
None;

M. S. Klein-Gitelman,
None;

M. Henrickson,
None;

T. L. Lee,
None;

J. D. Pendl,
None;

M. G. Punaro,
None;

J. L. Huggins,
None;

A. M. Stevens,
None;

H. Brunner,
None.

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