RESUMEN
Discordance in perception of disease activity between adolescent patients with lupus and their providers may influence disease outcomes. We found that patients endorsed higher perceptions of disease activity than providers. Discordance was present at all levels of disease activity, particularly in patients with high activity, nephritis, and/or taking corticosteroids or mycophenolate mofetil.
Asunto(s)
Lupus Eritematoso Sistémico , Humanos , Lupus Eritematoso Sistémico/psicología , Adolescente , Femenino , Masculino , Estudios de Cohortes , Índice de Severidad de la Enfermedad , Percepción , Ácido Micofenólico/uso terapéutico , NiñoRESUMEN
OBJECTIVES: To describe female adolescents' reproductive health needs and subspecialists' teratogenic counseling at initiation of mycophenolate as well as use of reproductive health care and contraception after mycophenolate initiation. STUDY DESIGN: We searched health records for female patients aged 12-20 years prescribed mycophenolate from 2010 to 2019. We included 125 subjects, 72 with systemic lupus erythematosus, 27 with transplants, and 26 with other conditions. We reviewed all encounters with pediatric subspecialists and reproductive clinicians. We recorded counseling by subspecialists at mycophenolate initiation and compared rates pre- and post-Risk Evaluation and Mitigation Strategy (REMS). We recorded subjects' menstrual, sexual and pregnancy history, type of first highly effective contraceptive method used, and duration of use over the decade. RESULTS: At mycophenolate initiation, mean age was 16.8 ± 2.6 years; 72% Hispanic/Latina or Black. In total, 80% were postmenarchal, 28% ever had sex, 18% ever had a reproductive health care visit, 14% used highly effective contraception, and 7% were ever pregnant. Post-REMS vs pre-REMS, we found greater rates of counseling for teratogenicity (68% vs 32%, P < .001) and contraception (62% vs 32%, P < .001) and pregnancy testing (51% vs 24%, P < .01). Over the mean 4.9 ± 3.3 years' follow-up, 56% ever had sex; 59% ever attended a reproductive health care visit; 38% used highly effective contraception; and 10% had a pregnancy. CONCLUSIONS: Adolescents prescribed mycophenolate have ongoing unmet reproductive health care needs. Although many are sexually active, fewer use effective contraception. Teratogenicity counseling rates improved over the decade but not rates of referral for reproductive health care.
Asunto(s)
Anticoncepción , Salud Reproductiva , Embarazo , Humanos , Adolescente , Femenino , Niño , Adulto Joven , Adulto , Estudios Retrospectivos , Anticoncepción/métodos , Conducta Sexual , HospitalesRESUMEN
OBJECTIVES: To determine whether there is an association between adverse childhood experiences (ACEs) and childhood-onset arthritis, comparing youth with arthritis to both healthy youth and youth with other acquired chronic physical diseases (OCPD); and to examine whether ACEs are associated with disease-related characteristics among children with arthritis. STUDY DESIGN: In a cross-sectional analysis of data from the 2016 National Survey of Children's Health we examined whether ACEs were associated with having arthritis vs either being healthy or having a nonrheumatologic OCPD. ACE scores were categorized as 0, 1, 2-3, ≥4 ACEs. Multinomial logistic regression models examined associations between ACEs and health status while adjusting for age, sex, race/ethnicity, and poverty status. Among children with arthritis, associations between ACEs and disease-related characteristics were assessed by Pearson χ2 analyses. RESULTS: Compared with children with no ACEs, children with 1, 2-3, and ≥4 ACEs had an increased odds of having arthritis vs being healthy (adjusted OR for ≥4 ACEs, 9.4; 95% CI, 4.0-22.1) and vs OCPD (adjusted OR for ≥4 ACEs, 3.7; 95% CI-1.7, 8.1). Among children with arthritis, ACEs were associated with worse physical impairment. CONCLUSIONS: Children with higher numbers of ACEs are more likely to have arthritis, when arthritis status is compared either with being healthy or with having OCPD. Further studies are needed to determine the direction of the association between ACEs and childhood arthritis, its impact on disease course, and potential intervention targets that might mitigate these effects.