Systemic lupus erythematosus (SLE) can cause adverse effects in various aspects of daily functioning for pediatric patients. Measuring Health-related Quality of Life (HRQOL) provides additional yet critical information and data for provision of best care, and assists to define additional resources and interventions. The Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) Generic Core Scale is a measure used to examine HRQOL and encompasses physical, emotional, social and school functioning of patients and identifies functional areas of concerns. The PedsQL 4.0 is used to measure HRQOL in both healthy and chronically ill children.

Methods:

The PedsQL 4.0 child self-report survey was administered to pediatric patients (aged 8-18) diagnosed with SLE in a large children’s hospital system over a 2 year period during outpatient clinical visits. The survey was given in both English and Spanish. Average scores were reviewed for each functional area as well as total averages. Patients received follow up surveys 3-12 months following their initial survey. Responses (ranging from 0-100) were scored by taking the average of each functional area, and a total scale score derived from the average of the combined functional area items. Higher scores indicated greater HRQOL.

Results:

The initial PedsQL 4.0 was completed by 48 pediatric SLE patients, of which 81% were female. The ethnic makeup of patients was: 88% White Hispanic, 8% White Non-Hispanic, 35% Black or African American Non-Hispanic with a median age of 13.81±2.45. One standard deviation below the mean (71.72-14.1) was identified as a cut-off point to identify patients at-risk of impaired HRQOL [1], resulting in a cut-off point score of 57.62. School was the functional area reported as most problematic on the initial survey (61.67), with social functioning reported as least problematic (88.23). Follow up surveys were completed by 38 patients during this 2 year review. At follow up, the average of the self-reported school scores was 66.4, meeting the criteria of a 4.4 point score change for minimum clinically important difference established in the literature [1]. Total scale score rose 8.76 points to 80.48 indicating improved HRQOL for SLE patients overall.

Conclusion:

Measuring HRQOL through the administration of the PedsQL 4.0 provides clinicians with further information regarding patient functioning over the course of disease. This allows greater focus on areas patients are reporting as being negatively impacted by their disease. For pediatric SLE patients at Texas Children’s Hospital this tool demonstrated improved HRQOL over a 1 year period.

1. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003; 3: 329–41.