Background: Children with JIA may experience difficulty with health related quality of life (HRQOL). The Patient Reported Outcomes Measurement Information System (PROMIS) a patient related outcome (PRO) measure, covers HRQOL domains that include physical function, mental health, and social interactions. During initial use, we found PROMIS identified children with symptoms of depression, sometimes before they shared those feelings with parents or members of the clinic team. We studied the use of PROMIS for this purpose, and to determine what demographic, clinical, and other characteristics might be related to higher depressive symptom scores. Methods: From March 2014 – February 2017, at each visit, all JIA patients having met ILAR classification criteria seen by M.L.M. received the PROMIS Short Form 35 v.1.0, as part of routine care. T scores were calculated from raw scores for mobility, anxiety, depressive symptoms, fatigue, peer relationships, and pain interference domains. Data extracted by optical mark recognition software were merged with electronic medical record (EMR data), extracted by Extract/Transform/Load software, including joint counts, visit age, ANA, RF, and HLA-B27 status. Mixed effects models were used to identify significant associations of independent variables with depression T scores. Results: Data from 148 patients were analyzed (114 females for 435 visits, 34 males for 118 visits; 13.8 ± 2.8 years): 70 persistent oligoarthritis, 9 extended oligoarthritis, 19 ERA, 21 polyarthritis (RF-), 5 polyarthritis (RF+), 11 undifferentiated arthritis, 3 psoriatic arthritis, 10 systemic arthritis). T scores showed wide ranges within individual JIA categories, with similar mean scores for all groups. Univariate linear mixed effects models showed significant relationships to depression T scores of gender and race (males and Asian patients with lower T scores, p <.0001, p = 0.091, respectively), joint count (p = 0.002), pain interference score (p = 0.0004), and Patient and Physician Global Assessment (p = 0.004, p <.0001, respectively). No particular JIA category was associated with Depression T scores. HRQOL domains were interrelated (p <.0001), including patients reporting symptoms of depression tending also to report symptoms of anxiety. PROMIS identified 15 patients who did not otherwise report depressive symptoms, but needed referral for counseling; eight did not endorse depressive symptoms until the 2nd or 3rd visit. Only 3 patients had disease flare. Concerns besides arthritis such as parental conflict or school bullying were elicited in 7 patients during interviews with the social worker. All patients expressed being worried about their arthritis. Conclusion: PROMIS is useful in screening JIA patients for symptoms of depression, particularly to identify patients who might not otherwise report these symptoms. The other PROMIS domain scores are related to reporting of symptoms of depression, as is Patient and Physician Global Assessment. Future studies will use PROMIS questionnaires incorporated into the EMR, permitting data entry by tablets and an online patient portal. This will make possible comparisons of HRQOL in children with JIA to those with other chronic rheumatic and non-rheumatic diseases.
- Health related quality of life
- Juvenile idiopathic arthritis
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Immunology and Allergy