Cystic fibrosis-related education: Are we meeting patient and caregiver expectations?

OBJECTIVE: The purpose of this study was to improve patient education in clinic by evaluating patient perceptions of education provided, as well as patient self-confidence related to topics within cystic fibrosis (CF). The study assessed whether self-confidence matched knowledge and defined patient-specific goals for education timing and information sources. METHODS: Age specific questionnaires were distributed over four months to patients 11 years of age and older and caregivers of patients of all ages at a single CF Foundation accredited care center. RESULTS: Participants reported frequent education on all topics except for reproductive effects of CF and mental health. A positive correlation was seen between overall confidence in CF-related knowledge and performance on a validated knowledge scale in adolescent caregivers only. Participants expected all educational milestones to be met by 13-14 years of age. CONCLUSIONS: Gaps in CF education remain and educational models should deliver information by the early teens without overlooking reproductive effects and mental health. PRACTICE IMPLICATIONS: The educational model for CF clinics should become more comprehensive by including education on topics such as mental health and reproductive effects. Providers are an important pathway for information and should not disregard the value of education provided during clinic visits.

Vancomycin Dosing in Pediatric Extracorporeal Membrane Oxygenation: Potential Impacts of New Technologies.

OBJECTIVES: The objective of the current study was to evaluate the doses of vancomycin used to obtain therapeutic drug concentrations in pediatric patients on extracorporeal membrane oxygenation (ECMO), using new ECMO technologies. METHODS: This was a single-center, retrospective study of patients treated with vancomycin while receiving ECMO using low-volume circuit technology. RESULTS: A total of 28 patients were included in the analysis of the primary endpoint. Patients had a median age of 6 weeks (0-11 years) and a median weight of 3.45 kg (2.44-37.2 kg). Ultrafiltration was used in 89.3% of patients at initiation of ECMO regardless of baseline renal function, resulting in a median urine output of 2 mL/kg/hr at the time of the final vancomycin dose. Most patients started vancomycin at the same time as ECMO. The median total daily dose was 30 mg/kg/day. The median total daily dose in a subset of patients less than one year of age was 20 mg/kg/day. Nearly all patients had at least 1 therapeutic trough serum vancomycin concentration. A total of 16 patients completed their vancomycin course using an interval of every 12 hours or shorter. Half-life was calculated in a subset of 11 patients and the mean was found to be 12.3 ± 2.8 hours. CONCLUSIONS: An initial dosing interval of every 12 hours to provide a total daily dose of 30 mg/kg/day is a possible option in pediatric patients on ECMO provided that renal function is normal at baseline. Monitoring of serum vancomycin concentrations for adjustment of dosing is required throughout therapy and is still warranted.