Rates of Pneumocystis jirovecii pneumonia and prophylaxis prescribing patterns in a large electronic health record cohort of patients with systemic lupus erythematosus.

Objective No guidelines exist for Pneumocystis jirovecii pneumonia (PJP) prophylaxis in patients with systemic lupus erythematosus (SLE). Limited data are available on incidence of PJP infection and use of PJP prophylaxis. Using a real-world, electronic health record (EHR) cohort, we investigated the frequency of PJP infections as well as patient and provider factors that impacted use and type of PJP prophylaxis. Methods  In a large, de-identified EHR, we identified possible SLE patients using a previously validated algorithm. PJP ICD-9 or ICD-10-CM billing codes and PJP keywords were used to identify possible PJP cases within this SLE cohort. We assessed for PJP prophylaxis prescribing in all SLE patients using keywords and reviewing medication lists for prophylactic agents. Chart review was used to confirm cases of SLE, PJP, and PJP prophylaxis and to obtain data on demographics, comorbidities, and immunosuppressants. Results Of 977 SLE patients, there were only four with confirmed PJP infection. Two of these patients had concurrent Acquired Immunodeficiency Syndrome, and none were on prophylaxis. Of 977 SLE patients, 132 (14%) were prescribed PJP prophylaxis. Of 617 SLE patients ever prescribed immunosuppressants, 128 (21%) were prescribed PJP prophylaxis. Sulfonamides were the most common prophylaxis prescribed (69%), and possible adverse events were documented in 22 out of 117 instances of being placed on a sulfonamide. Patients of younger age, Black race, nephritis, and renal transplant, and on chronic glucocorticoids were all more likely to have PJP prophylaxis prescribed. Patients who were on transplant induction medications, calcineurin/mTOR inhibitors, cyclophosphamide, and mycophenolate mofetil all were more likely to be prescribed PJP prophylaxis compared to other immunosuppressants. Conclusion PJP is a rare diagnosis among SLE patients, and prior studies may even overestimate its prevalence. PJP prophylaxis was less common in our cohort than previously described. Adverse events related to sulfonamides used for PJP prophylaxis were relatively rare with lower rates than previously reported. Our study demonstrates real-world PJP prophylaxis prescribing patterns in a large cohort of SLE patients.

How Do Health Literacy, Numeric Competencies, and Patient Activation Relate to Transition Readiness in Adolescents and Young Adults With Rheumatic Diseases?

OBJECTIVE: To evaluate how demographics, health literacy, numeracy, and patient activation are related to transition readiness in adolescent and young adult (AYA) patients and to describe how parent/guardian (PG) performance on these metrics predicts AYA patients' transition readiness. METHODS: In this single center, cross-sectional study, consecutive English-speaking AYA patients ages 17-21 years and PGs were recruited from outpatient rheumatology clinics. Participants completed the following self-reported instruments: demographic questionnaire, Short Test of Fundamental Health Literacy, Objective Numeracy Scale, Subjective Numeracy Scale, Symbolic-number mapping, Patient Activation Measure, and Transition Readiness Assessment Questionnaire (TRAQ; AYA patients only). RESULTS: Ninety-one AYA patients participated in the study, of whom 64 of 91 (70%) had juvenile idiopathic arthritis, and 54 PGs. Mean ± SD TRAQ score was 4.0 ± 0.65, correlating with "I am starting to do this" stage of change. Most participants (98%) had adequate health literacy. Multivariable regression analysis showed that AYA patients of female sex, older age, and higher patient activation significantly predicted higher TRAQ scores (P < 0.05). No PG characteristics were linked to higher AYA patient TRAQ scores. CONCLUSIONS: Transition readiness in AYA patients as measured by TRAQ is associated with female sex, older age, and higher patient activation. Though sex and age are nonmodifiable, interventions to boost patient activation represent a promising opportunity to improve transition readiness and outcomes.