The prevalence of paediatric-onset SLE (pSLE) is estimated at 1million people worldwide and accounts for a significant proportion of SLE morbidity, mortality and cost. Patients with pSLE are especially vulnerable during and immediately following transfer from paediatric to adult rheumatology care, when substantial delays in care and increased disease activity are common. Transition is the process through which adolescents and young adults (AYA) develop the skills needed to succeed in the adult healthcare environment, a process that typically takes several years and may span a patient’s time in paediatric and adult clinics. Recommendations for improving transition and transfer for AYA with pSLE include setting expectations of the AYA patient and family concerning transition and transfer, developing AYA’s self-management skills, preparing an individualised transition plan that identifies a date for transfer, transferring at a time of medical and social stability, coordinating communication between the paediatric and adult rheumatologists (inclusive of both a medical summary and key social factors), and identifying a transition coordinator as a point person for care transfer and to monitor the AYA’s arrival and retention in adult rheumatology care. Of paramount importance is empowering the adult rheumatologist with skills that enhance rapport with AYA patients, engage AYA patients and families in adult care models, promote adherence and encourage ongoing development of self-management skills.
Teratogenic medications are often prescribed to women of childbearing age with autoimmune diseases. Literature suggests that appropriate use of contraception among these women is low, potentially resulting in high-risk unintended pregnancies. Preliminary review in our clinic showed suboptimal documentation of women’s contraceptive use. We therefore designed a quality improvement initiative to target three process measures: documentation of contraception usage and type, contraception counselling and provider action after counselling. We reviewed charts of rheumatology clinic female patients aged 18–45 over the course of 10 months; for those who were on teratogenic medications (methotrexate, leflunomide, mycophenolate and cyclophosphamide), we looked for evidence of documentation of contraception use. We executed multiple plan-do-study-act (PDSA) cycles to develop and evaluate interventions, which centred on interprofessional provider education, modification of electronic medical record (EMR) templates, periodic provider reminders, patient screening questionnaires and frequent feedback to providers on performance. Among eligible patients (n=181), the baseline rate of documentation of contraception type was 46%, the rate of counselling was 30% and interventions after counselling occurred in 33% of cases. Averaged intervention data demonstrated increased provider performance in all three domains: documentation of contraception type increased to 64%, counselling to 45% and provider action to 46%. Of the patients with documented contraceptives, 50% used highly effective, 27% used effective and 23% used ineffective contraception methods. During this project, one unintentional pregnancy occurred in a patient on methotrexate not on contraception. Our interventions improved three measures related to contraception counselling and documentation, but there remains a need for ongoing quality improvement efforts in our clinic. This high-risk population requires increased provider engagement to improve contraception compliance, coupled with system-wide EMR changes to increase sustainability.