Objectives To measure the health-related quality of life (HRQOL) and functional status of children with cardiomyopathy and to determine whether they are correlated with sociodemographics, cardiac status, and clinical outcomes. Study design Parents of children in the Pediatric Cardiomyopathy Registry completed the Child Health Questionnaire (CHQ; age ≥5 years) and Functional Status II (Revised) (age ≤18 years) instruments. Linear and Cox regressions were used to examine hypothesized associations with HRQOL. Results The 355 children evaluated at ≥5 years (median 8.6 years) had lower functioning (CHQ Physical and Psychosocial Summary Scores 41.7 ± 14.4 and 47.8 ± 10.7) than that of healthy historical controls. The most extreme CHQ domain score, Parental Impact-Emotional, was one SD below normal. Younger age at diagnosis and smaller left ventricular end-diastolic dimension z score were associated independently with better physical functioning in children with dilated cardiomyopathy. Greater income/education correlated with better psychosocial functioning in children with hypertrophic and mixed/other types of cardiomyopathy. In the age ≥5 year cohort, lower scores on both instruments predicted earlier death/transplant and listing for transplant in children with dilated and mixed/other types of cardiomyopathy (P < .001). Across all ages (n = 565), the Functional Status II (Revised) total score was 87.1 ± 16.4, and a lower score was associated with earlier death/transplant for all cardiomyopathies. Conclusions HRQOL and functional status in children with cardiomyopathy is on average impaired relative to healthy children. These impairments are associated with older age at diagnosis, lower socioeconomic status, left ventricular size, and increased risk for death and transplant. Identification of families at risk for functional impairment allows for provision of specialized services early in the course of disease. Trial registration ClinicalTrials.gov: NCT00005391.

To characterize information technology (IT) platforms used by maternal-fetal medicine (MFM) practices in the USA. STUDY DESIGN: The Practice Management Division of SMFM administered the Operational Benchmarking Survey to MFM practices recruited by nationwide e-mail and social media solicitation. The online Survey, conducted in the Spring of 2019, comprised >120 questions examining aspects of MFM practice during calendar year 2018. Response data are summarized to provide benchmark information. RESULTS: 45 MFM practices participated, representing 26 USA states and 315 MFM providers. An electronic medical record (EMR) was used by 44 of the practices (98%). Ten different commercial EMRs were used, of which 5 were used by 84% of practices (Figure 1). Interface of the practice EMR to the hospital EHR was reported as Complete or Partial by all Epic users, a majority of Cerner users (3 of 4), and by less than half the users of the other systems. Practices reported that information technology (IT) infrastructure was maintained by a hospital (44%), practice or medical group (28%), contracted external vendor (9%), or a combination of these (18%). IT maintenance expenses were paid by hospital (38%), practice or medical group (55%), or a combination of sources (7%). Telehealth was used for patient evaluation and management visits (E&M) in 33% of practices and teleradiology or remote US reading in 44% (Table). We did not ask for names of commercial systems or platforms used for telemedicine services. Telehealth E&M visits were more common among Corporate-or-Independent practices than among Hospital-based-or-University practices (55% vs 16%, p¼0.04, Chi squared test). CONCLUSION: These data provide a "snapshot" of IT platforms used by a sample of MFM practices. Utilization is generally similar among different types of practice. There is a need for better integration of practice EMRs to hospital EMRs.