Systems of care among children and youth with special health care needs with and without adverse childhood events: National Survey of Children's Health 2016–2017

BackgroundKnowledge of adverse childhood events (ACEs), the associated access to healthcare and unmet needs among children and youth with special health care needs (CYSHCN) is limited.ObjectivesOur objectives were to compare the likelihood of CYSHCN versus non-CYSHCN experiencing one or more ACEs and document differences in receipt of recommended and needed health care among CYSHCN with and without ACEs.MethodsWe combined two years of data from the 2016 and 2017 National Survey of Children's Health (N = 71,181), providing a sample of 16,304 CYSHCN. Our primary outcome measures included eight adverse childhood events, compared to singular and aggregated ACEs among non-CYSHCN. We calculated associations between ACEs and secondary outcome measures for six components of well-functioning systems of care and unmet need for different types of health care using bivariate and multivariate analyses.ResultsCYSHCN were more likely to have each of the ACEs measured and were likelier to experience aggregated levels of ACEs compared to non-CYSHCN. The likelihood of CYSHCN having a medical home with family-centered and coordinated care decreased with increased ACEs, while one or more ACES increased the likelihood of having unmet needs for mental health care.ConclusionThe findings of the current study extend our understanding of the additional adverse event burden associated with special health care needs status, the accompanying limitations in access to family-centered and coordinated care in a medical home and unmet need for mental health care, indicating that much work remains in establishing appropriate care systems for this very vulnerable population.     

The contribution of medical burden to 22q11.2 deletion syndrome quality of life and functioning

PurposeTo date, there is no systematic method to quantify the medical burden of individuals with 22q11.2 deletion syndrome (22q11.2DS). This study aimed to design a Medical Burden Scale for 22q11.2DS to evaluate the effect of medical symptoms severity on quality of life (QoL) and functioning in individuals with this syndrome.MethodsIndividuals with 22q11.2DS (n = 76) were included in the study. A multidisciplinary group of physicians determined the severity of symptoms (on a scale of 0 to 4) of 8 major medical systems affected in 22q11.2DS, as well as the level of cognitive deficits and psychiatric morbidity. Regression models were used to evaluate the impact of medical, cognitive, and psychiatric symptoms’ severity on global assessment of functioning (GAF) and QoL.ResultsThe total Medical Burden Scale score was significantly associated with both QoL and GAF scores, beyond the effect of the psychiatric and cognitive deficits. We also found that QoL and GAF scores were associated with the severity scores of specific medical systems, particularly neurological symptoms, but also cardiovascular, ear-nose-throat, endocrinology, and orthopedics.ConclusionQuantifying the medical burden of 22q11.2DS individuals is feasible and indicates the overall and specific contribution of medical symptoms to QoL and functioning of 22q11.2DS individuals.     

Möglichkeiten und Grenzen des EKG bei leistungsdiagnostischen Untersuchungen

The European approach of preparticipation screening to prevent sudden cardiac deaths in sports consists of anamnesis, physical examination and ECG. The knowledge of training-related ECG alterations reduces false-positive results. In high performance sports in Germany and some other countries, an exercise ECG is additionally performed. The implementation of the exercise ECG is generally recommended for athletes older than 35 years. Under laboratory conditions, ECG at rest and during exercise can be involved in the performance diagnostics. Measurements of lactate and respiratory parameters during bicycle and treadmill ergometry can be combined with ECG.     

Methodology for a six-state survey of primary care nurse practitioners

BackgroundPrimary care practices employing nurse practitioners (NPs) can play an important role in improving access to high quality health care services. However, most studies on the NP role in health care use administrative data, which have many limitations.PurposeIn this paper, we report the methods of the largest survey of primary care NPs to date.MethodsTo overcome the limitations of administrative data, we fielded a cross-sectional, mixed-mode (mail/online) survey of primary care NPs in six states to collect data directly from NPs on their clinical roles and practice environments.FindingsWhile we were able to collect data from over 1,200 NPs, we encountered several challenges with our sampling frame, including provider turnover and challenges with identification of NP specialty.DiscussionIn future surveys, researchers can employ strategies to avoid the issues we encountered with the sampling frame and enhance large scale survey data collection from NPs.