Eliminating Categorical Exclusion Criteria in Crisis Standards of Care Frameworks

Abstract

During public health crises including the COVID-19 pandemic, resource scarcity and contagion risks may require health systems to shift—to some degree—from a usual clinical ethic, focused on the well-being of individual patients, to a public health ethic, focused on population health. Many triage policies exist that fall under the legal protections afforded by “crisis standards of care,” but they have key differences. We critically appraise one of the most fundamental differences among policies, namely the use of criteria to categorically exclude certain patients from eligibility for otherwise standard medical services. We examine these categorical exclusion criteria from ethical, legal, disability, and implementation perspectives. Focusing our analysis on the most common type of exclusion criteria, which are disease-specific, we conclude that optimal policies for critical care resource allocation and the use of cardiopulmonary resuscitation (CPR) should not use categorical exclusions. We argue that the avoidance of categorical exclusions is often practically feasible, consistent with public health norms, and mitigates discrimination against persons with disabilities.     

Information Privacy for Technology Users With Intellectual and Developmental Disabilities: Why Does It Matter?

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy.     

People with physical disability in Serbia: Relationship between internalized stigma,experienced and anticipated discrimination,and empowerment

The aim of present study was to explore relationships between experienced and anticipated discrimination, internalized stigma, and empowerment among people with physical disabilities in Serbia. The convenience sample consisted of persons with different types of physical disabilities. The following scales were administrated: The Discrimination and Stigma Scale, the Internalized Stigma of Mental Illness Scale, and the Boston University Empowerment Scale. An analysis showed that internalized stigma was correlated with experienced and anticipated discrimination and empowerment, while no correlation was found between empowerment and discrimination. People with physical disabilities who experienced and anticipated discrimination are at higher risk of reporting internalized stigma.     

A Case for Greater Risk Tolerance in Internet Use by Adults with Intellectual Disabilities: A Comment on Chalghoumi et al.

This comment argues for increased tolerance of privacy risks in the Internet activity of adults with intellectual disabilities. Excessive caution about such risks denies those individuals not only the great benefits of Internet use but also the difficult but valuable experiences of loss, disappointment, and hurt associated with those risks. A level of risk-aversion appropriate for small children will be disrespectful for adults with intellectual disabilities. To the extent that additional safeguards are justified, they are better achieved through individualized security and privacy settings than through caregiver oversight.     

Development and validation of PediaTrac™: A web-based tool to track developing infants

ObjectivePediaTrac™, a 363-item web-based tool to track infant development, administered in modules of ∼40-items per sampling period, newborn (NB), 2­-, 4­-, 6­-, 9­- and 12­-months was validated. Caregivers answered demographic, medical, and environmental questions, and questions covering the sensorimotor, feeding/eating, sleep, speech/language, cognition, social-emotional, and attachment domains.MethodsExpert Panel Reviews and Cognitive Interviews (CI) were conducted to validate the item bank. Classical Test Theory (CTT) and Item Response Theory (IRT) methods were employed to examine the dimensionality and psychometric properties of PediaTrac with pooled longitudinal and cross-sectional cohorts (N = 132).ResultsIntraclass correlation coefficients (ICC) for the Expert Panel Review revealed moderate agreement at 6 ­months and good reliability at other sampling periods. ICC estimates for CI revealed moderate reliability regarding clarity of the items at NB and 4 months, good reliability at 2-­, 9­- and 12­-months and excellent reliability at 6 ­months. CTT revealed good coefficient alpha estimates (α ≥ 0.77 for five of the six ages) for the Social-Emotional/Communication, Attachment (α ≥ 0.89 for all ages), and Sensorimotor (α ≥ 0.75 at 6-months) domains, revealing the need for better targeting of sensorimotor items. IRT modeling revealed good reliability (r = 0.85–0.95) for three distinct domains (Feeding/Eating, Social-Emotional/Communication and Attachment) and four subdomains (Feeding Breast/Formula, Feeding Solid Food, Social-Emotional Information Processing, Communication/Cognition). Convergent and discriminant construct validity were demonstrated between our IRT-modeled domains and constructs derived from existing developmental, behavioral and caregiver measures. Our Attachment domain was significantly correlated with existing measures at the NB and 2-month periods, while the Social-Emotional/Communication domain was highly correlated with similar constructs at the 6-, 9- and 12-month periods.ConclusionPediaTrac has potential for producing novel and effective estimates of infant development via the Sensorimotor, Feeding/Eating, Social-Emotional/Communication and Attachment domains.     

Leveraging epigenetics to examine differences in developmental trajectories of social attention: A proof-of-principle study of DNA methylation in infants with older siblings with autism

Preliminary evidence suggests that changes in DNA methylation, a widely studied epigenetic mechanism, contribute to the etiology of Autism Spectrum Disorder (ASD). However, data is primarily derived from post-mortem brain samples or peripheral tissue from adults. Deep-phenotyped longitudinal infant cohorts are essential to understand how epigenetic modifications relate to early developmental trajectories and emergence of ASD symptoms. We present a proof-of-principle study designed to evaluate the potential of prospective epigenetic studies of infant siblings of children with ASD.Illumina genome-wide 450 K DNA methylation data from buccal swabs was generated for 63 male infants at multiple time-points from 8 months to 2 years of age (total N = 107 samples). 11 of those infants received a diagnosis of ASD at 3 years. We conducted a series of analyses to characterize DNA methylation signatures associated with categorical outcome and neurocognitive measures from parent-report questionnaire, eye-tracking and electro-encephalography.Effects observed across the entire genome (epigenome-wide association analyses) suggest that collecting DNA methylation samples within infant-sibling designs allows for the detection of meaningful signals with smaller sample sizes than previously estimated. Mapping networks of co-methylated probes associated with neural correlates of social attention implicated enrichment of pathways involved in brain development. Longitudinal modelling found covariation between phenotypic traits and DNA methylation levels in the proximity of genes previously associated with cognitive development, although larger samples and more complete datasets are needed to obtain generalizable results.In conclusion, assessment of DNA methylation profiles at multiple time-points in infant-sibling designs is a promising avenue to comprehend developmental origins and mechanisms of ASD.     

Sensing everyday activity: Parent perceptions and feasibility

Mobile and wearable sensors provide a unique opportunity to capture the daily activities and interactions that shape developmental trajectories, with potential to revolutionize the study of development (de Barbaro, 2019). However, developmental research employing sensors is still in its infancy, and parents’ comfort using these devices is uncertain. This exploratory report assesses parent willingness to participate in sensor studies via a nationally representative survey (N = 210) and live recruitment of a low-income, minority population for an ongoing study (N = 359). The survey allowed us to assess how protocol design influences acceptability, including various options for devices and datastream resolution, conditions of data sharing, and feedback. By contrast, our recruitment data provided insight into parents’ true willingness to participate in a sensor study, with a protocol including 72 h of continuous audio, motion, and physiological data. Our results indicate that parents are relatively conservative when considering participation in sensing studies. However, nearly 41 % of surveyed parents reported that they would be at least somewhat willing to participate in studies with audio or video recordings, 26 % were willing or extremely willing, and 14 % reported being extremely willing. These results roughly paralleled our recruitment results, where 58 % of parents indicated interest, 29 % of parents scheduled to participate, and 10 % ultimately participated. Additionally, 70 % of caregivers stated their reason for not participating in the study was due to barriers unrelated to sensing while about 25 % noted barriers due to either privacy concerns or the physical sensors themselves. Parents’ willingness to collect sensitive datastreams increased if data stayed within the household for individual use only, are shared anonymously with researchers, or if parents receive feedback from devices. Overall, our findings suggest that given the correct circumstances, mobile sensors are a feasible and promising tool for characterizing children’s daily interactions and their role in development.