Informing Digital Programs for Lupus Self-Management Education: A Systematic Scoping Review.

OBJECTIVE: We describe the characteristics, content, and effectiveness of digital self-management (SM) education programs for lupus and other chronic conditions to identify gaps and inform the improvement of future programs in lupus. METHODS: Three bibliographic databases were searched for articles published between May 2012 and April 2022. The search was cast to capture the breadth of digital SM education programs in the following conditions: lupus, epilepsy, fibromyalgia, multiple sclerosis, sickle cell anemia, Sjögren syndrome, psoriatic arthritis, and rheumatoid arthritis. Title and abstract screening, as well as full-text review, was conducted by two independent reviewers. Data extraction was first completed by one author charting all studies and then, a second time, by four members of the research team charting collaboratively. RESULTS: Of the 1,969 articles identified through the search, 14 met inclusion criteria. Two additional articles were included following bibliography review. The 16 articles represented 12 unique digital SM education programs. Programs covered five conditions: epilepsy (n = 3), fibromyalgia (n = 2), multiple sclerosis (n = 4), lupus (n = 1), and rheumatoid arthritis (n = 2). Most programs were asynchronous and internet-based (n = 9) with a prescribed sequence of content (n = 8). Peer, technical, or specialist support was offered in seven programs. Most programs demonstrated statistically significant improvement of symptoms in the intervention group (n = 8). CONCLUSION: This scoping review summarizes the current landscape for digital SM education programs in lupus and similar conditions. In lupus, further investigation will fill in the gaps around digital SM education needs, user experience, and evaluation of outcomes.

Implementation of new technologies designed to improve cervical cancer screening and completion of care in low-resource settings: a case study from the Proyecto Precancer.

BACKGROUND: This case study details the experience of the Proyecto Precancer in applying the Integrative Systems Praxis for Implementation Research (INSPIRE) methodology to guide the co-development, planning, implementation, adoption, and sustainment of new technologies and screening practices in a cervical cancer screening and management (CCSM) program in the Peruvian Amazon. We briefly describe the theoretical grounding of the INSPIRE framework, the phases of the INSPIRE process, the activities within each phase, and the RE-AIM outcomes used to evaluate program outcomes. METHODS: Proyecto Precancer iteratively engaged over 90 stakeholders in the Micro Red Iquitos Sur (MRIS) health network in the Amazonian region of Loreto, Perú, through the INSPIRE phases. INSPIRE is an integrative research methodology grounded in systems thinking, participatory action research, and implementation science frameworks such as the Consolidated Framework for Implementation Research. An interrupted time-series design with a mixed-methods RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) evaluation framework was used to examine the adoption of human papillomavirus (HPV) testing (including self-sampling), with direct treatment after visual inspection with portable thermal ablation, at the primary level. RESULTS: This approach, blending participatory action research, implementation science, and systems-thinking, led to rapid adoption and successful implementation of the new cervical cancer screening and management program within 6 months, using an HPV-based screen-and-treat strategy across 17 health facilities in one of the largest public health networks of the Peruvian Amazon. Monitoring and evaluation data revealed that, within 6 months, the MRIS had surpassed their monthly screening goals, tripling their original screening rate, with approximately 70% of HPV-positive women reaching a completion of care endpoint, compared with around 30% prior to the new CCSM strategy. CONCLUSIONS: Proyecto Precancer facilitated the adoption and sustainment of HPV testing with subsequent treatment of HPV-positive women (after visual inspection) using portable thermal ablation at the primary level. This was accompanied by the de-implementation of existing visual inspection-based screening strategies and colposcopy for routine precancer triage at the hospital level. This case study highlights how implementation science approaches were used to guide the sustained adoption of a new screen-and-treat strategy in the Peruvian Amazon, while facilitating de-implementation of older screening practices.

Should Transport Ventilators Be Used in Times of Crisis? The Use of Emergency Authorized Nonconventional Ventilators Is Associated With Mortality Among Patients With COVID-19 Acute Respiratory Distress Syndrome.

OBJECTIVES: Nonconventional ventilators (NCVs), defined here as transport ventilators and certain noninvasive positive pressure devices, were used extensively as crisis-time ventilators for intubated patients with COVID-19. We assessed whether there was an association between the use of NCV and higher mortality, independent of other factors. DESIGN: This is a multicenter retrospective observational study. SETTING: The sample was recruited from a single healthcare system in New York. The recruitment period spanned from March 1, 2020, to April 30, 2020. PATIENTS: The sample includes patients who were intubated for COVID-19 acute respiratory distress syndrome (ARDS). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The primary outcome was 28-day in-hospital mortality. Multivariable logistic regression was used to derive the odds of mortality among patients managed exclusively with NCV throughout their ventilation period compared with the remainder of the sample while adjusting for other factors. A secondary analysis was also done, in which the mortality of a subset of the sample exclusively ventilated with NCV was compared with that of a propensity score-matched subset of the control group. Exclusive use of NCV was associated with a higher 28-day in-hospital mortality while adjusting for confounders in the regression analysis (odds ratio, 1.41; 95% CI [1.07-1.86]). In the propensity score matching analysis, the mortality of patients exclusively ventilated with NCV was 68.9%, and that of the control was 60.7% ( p = 0.02). CONCLUSIONS: Use of NCV was associated with increased mortality among patients with COVID-19 ARDS. More lives may be saved during future ventilator shortages if more full-feature ICU ventilators, rather than NCVs, are reserved in national and local stockpiles.

Implementation of new technologies designed to improve cervical cancer screening and completion of care in low-resource settings: A case study from the Proyecto Precancer.

Background: This case study details the experience of the Proyecto Precancer in applying the Integrative Systems Praxis for Implementation Research (INSPIRE) research methodology to guide the co-development, planning, implementation, adoption, and sustainment of new technologies and screening practices in a cervical cancer screening and management program in the Peruvian Amazon. We briefly describe the theoretical grounding of the INSPIRE framework, the phases of the INSPIRE process, the activities within each phase, and the RE-AIM outcomes used to evaluate program outcomes. Methods: Proyecto Precancer iteratively engaged over 90 stakeholders in the Micro Red Iquitos Sur (MRIS) health network in the Amazonian region of Loreto, Perú through the INSPIRE phases. INSPIRE is an integrative research methodology grounded in systems thinking, participatory action research, and implementation science frameworks such as the Consolidated Framework for Implementation Research. An interrupted time-series design with a mixed-methods RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) evaluation framework was used to examine the adoption of molecular-based primary cervical cancer screening using HPV-testing (including self-sampling), with direct treatment after visual inspection with portable thermal ablation at the primary level. Results: The participatory and system-thinking-oriented approach led to rapid adoption and successful implementation of the new cervical cancer screening and management program within 6 months, using an HPV-based screen-and-treat strategy across 17 health facilities in one of the largest public health networks of the Peruvian Amazon. Monitoring and evaluation data revealed that, within 6 months, the MRIS had surpassed their monthly screening goals, tripling their original screening rate, with approximately 70% of HPV-positive women reaching a completion of care endpoint, compared with around 30% prior to the new CCSM strategy. Conclusions: Proyecto Precancer facilitated the adoption and sustainment of molecular-based primary cervical cancer screening using HPV-testing (including self-sampling), with direct treatment after visual inspection with portable thermal ablation at the primary level and the de-implementation of existing visual inspection-based screening strategies and colposcopy for routine precancer triage at the hospital level. This case study shows how PP used implementation science approaches to guide the adoption of a new screen-and-treat strategy in the Peruvian Amazon, while facilitating de-implementation of older screening practices.

The long-term impact of an interprofessional humanistic faculty development programme: A qualitative investigation.

RATIONALE, AIMS, AND OBJECTIVES: While it has long been supported that faculty development programmes serve as a means to improving practical knowledge, professional skills, and identity formation for faculty, significantly less research is focused on how learning that occurs in faculty development programmes is actually employed in the workplace and ingrained in day-to-day activities. The present study qualitatively explored the long-term impact of the Mentoring and Professionalism in Training (MAP-IT) programme, a longitudinal, interprofessional faculty development curriculum designed to enhance clinicians' humanistic mentoring skills, specifically nurses and physicians. METHOD: Participants included 21 former high-potential mentors and facilitator leaders who had graduated from the MAP-IT programme from 2014 to 2016. Semi-structured focus groups and interviews were conducted between August and September of 2017 to collect participant experiences of the impact of MAP-IT skills on their professional roles (with colleagues and patients) in their clinical environments. Qualitative data were analysed using content analysis methodology. RESULTS: Qualitative analyses using an editing analysis style resulted in nine major themes, including incorporation into clinical practice, self-care, team building and conflict resolution, mindfulness, mentorship, professionalism, interprofessional collaboration, humanism, and appreciative inquiry. CONCLUSION: The personal and professional development instilled through the MAP-IT programme was found to remain important over time, years after participation in the programme had concluded, supporting its "durability." Implications are also discussed.

Predicting Indirect Effects of Predator-Prey Interactions.

SYNOPSIS: Predicting the effects of climate change on species and communities remains a pre-eminent challenge for biologists. Critical among this is understanding the indirect effects of climate change, which arise when the direct, physiological effects of climate on one species change the outcome of its interaction with a second species, altering the success of the second species. A diverse array of approaches to predicting indirect effects exists from mechanistic models, which attempt to build-up from physiological changes to ecological consequences, to ecological models that focus solely on the ecological scale. Here I review studies of the indirect effects of temperature on two predator-prey systems in rocky intertidal habitats. Laboratory and field studies have shown that temperature can indirectly affect interactions through both physiological and behavioral changes in predator and prey, but no model yet captures the full range of these effects. The three main categories of changes are metabolic rate effects, stress effects, and behavioral avoidance. Mechanistic models best capture the first two of these three dynamics, while ecological models have focused mainly on the last two. The challenge remains to correctly identify a species' vulnerability to climate change, which differs from its physiological sensitivity. The best approach may be to use detailed physiological-scale studies of indirect effect in a few systems to ground truth simpler models that can be applied more broadly. Model development and testing is also hampered by the small number of field studies of indirect effects in natural systems, particularly studies that examine natural temporal or spatial variation in climate.

Long-term, high frequency in situ measurements of intertidal mussel bed temperatures using biomimetic sensors.

At a proximal level, the physiological impacts of global climate change on ectothermic organisms are manifest as changes in body temperatures. Especially for plants and animals exposed to direct solar radiation, body temperatures can be substantially different from air temperatures. We deployed biomimetic sensors that approximate the thermal characteristics of intertidal mussels at 71 sites worldwide, from 1998-present. Loggers recorded temperatures at 10-30 min intervals nearly continuously at multiple intertidal elevations. Comparisons against direct measurements of mussel tissue temperature indicated errors of ~2.0-2.5 °C, during daily fluctuations that often exceeded 15°-20 °C. Geographic patterns in thermal stress based on biomimetic logger measurements were generally far more complex than anticipated based only on 'habitat-level' measurements of air or sea surface temperature. This unique data set provides an opportunity to link physiological measurements with spatially- and temporally-explicit field observations of body temperature.

Genotype to phenotype relationships in autism spectrum disorders.

Autism spectrum disorders (ASDs) are characterized by phenotypic and genetic heterogeneity. Our analysis of functional networks perturbed in ASD suggests that both truncating and nontruncating de novo mutations contribute to autism, with a bias against truncating mutations in early embryonic development. We find that functional mutations are preferentially observed in genes likely to be haploinsufficient. Multiple cell types and brain areas are affected, but the impact of ASD mutations appears to be strongest in cortical interneurons, pyramidal neurons and the medium spiny neurons of the striatum, implicating cortical and corticostriatal brain circuits. In females, truncating ASD mutations on average affect genes with 50-100% higher brain expression than in males. Our results also suggest that truncating de novo mutations play a smaller role in the etiology of high-functioning ASD cases. Overall, we find that stronger functional insults usually lead to more severe intellectual, social and behavioral ASD phenotypes.

Diverse types of genetic variation converge on functional gene networks involved in schizophrenia.

Despite the successful identification of several relevant genomic loci, the underlying molecular mechanisms of schizophrenia remain largely unclear. We developed a computational approach (NETBAG+) that allows an integrated analysis of diverse disease-related genetic data using a unified statistical framework. The application of this approach to schizophrenia-associated genetic variations, obtained using unbiased whole-genome methods, allowed us to identify several cohesive gene networks related to axon guidance, neuronal cell mobility, synaptic function and chromosomal remodeling. The genes forming the networks are highly expressed in the brain, with higher brain expression during prenatal development. The identified networks are functionally related to genes previously implicated in schizophrenia, autism and intellectual disability. A comparative analysis of copy number variants associated with autism and schizophrenia suggests that although the molecular networks implicated in these distinct disorders may be related, the mutations associated with each disease are likely to lead, at least on average, to different functional consequences.

Rare de novo variants associated with autism implicate a large functional network of genes involved in formation and function of synapses.

Identification of complex molecular networks underlying common human phenotypes is a major challenge of modern genetics. In this study, we develop a method for network-based analysis of genetic associations (NETBAG). We use NETBAG to identify a large biological network of genes affected by rare de novo CNVs in autism. The genes forming the network are primarily related to synapse development, axon targeting, and neuron motility. The identified network is strongly related to genes previously implicated in autism and intellectual disability phenotypes. Our results are also consistent with the hypothesis that significantly stronger functional perturbations are required to trigger the autistic phenotype in females compared to males. Overall, the presented analysis of de novo variants supports the hypothesis that perturbed synaptogenesis is at the heart of autism. More generally, our study provides proof of the principle that networks underlying complex human phenotypes can be identified by a network-based functional analysis of rare genetic variants.

Do species' traits predict recent shifts at expanding range edges?

Although some organisms have moved to higher elevations and latitudes in response to recent climate change, there is little consensus regarding the capacity of different species to track rapid climate change via range shifts. Understanding species' abilities to shift ranges has important implications for assessing extinction risk and predicting future community structure. At an expanding front, colonization rates are determined jointly by rates of reproduction and dispersal. In addition, establishment of viable populations requires that individuals find suitable resources in novel habitats. Thus, species with greater dispersal ability, reproductive rate and ecological generalization should be more likely to expand into new regions under climate change. Here, we assess current evidence for the relationship between leading-edge range shifts and species' traits. We found expected relationships for several datasets, including diet breadth in North American Passeriformes and egg-laying habitat in British Odonata. However, models generally had low explanatory power. Thus, even statistically and biologically meaningful relationships are unlikely to be of predictive utility for conservation and management. Trait-based range shift forecasts face several challenges, including quantifying relevant natural history variation across large numbers of species and coupling these data with extrinsic factors such as habitat fragmentation and availability.

Heating up relations between cold fish: competition modifies responses to climate change.

Most predictions about species responses to climate change ignore species interactions. Helland and colleagues (2011) test whether this assumption is valid by evaluating whether ice cover affects competition between brown trout [Salmo trutta (L.)] and Arctic charr [Salvelinus alpines (L.)]. They show that increasing ice cover correlates with lower trout biomass when Arctic charr co-occur, but not in charr's absence. In experiments, charr grew better in the cold, dark environments that typify ice-covered lakes. Decreasing ice cover with warmer winters could mean more trout and fewer charr. More generally, their results provide an excellent example, suggesting that species interactions can strongly modify responses to climate change.

A framework for community interactions under climate change.

Predicting the impacts of climate change on species is one of the biggest challenges that ecologists face. Predictions routinely focus on the direct effects of climate change on individual species, yet interactions between species can strongly influence how climate change affects organisms at every scale by altering their individual fitness, geographic ranges and the structure and dynamics of their community. Failure to incorporate these interactions limits the ability to predict responses of species to climate change. We propose a framework based on ideas from global-change biology, community ecology, and invasion biology that uses community modules to assess how species interactions shape responses to climate change.

Organismal climatology: analyzing environmental variability at scales relevant to physiological stress.

Predicting when, where and with what magnitude climate change is likely to affect the fitness, abundance and distribution of organisms and the functioning of ecosystems has emerged as a high priority for scientists and resource managers. However, even in cases where we have detailed knowledge of current species' range boundaries, we often do not understand what, if any, aspects of weather and climate act to set these limits. This shortcoming significantly curtails our capacity to predict potential future range shifts in response to climate change, especially since the factors that set range boundaries under those novel conditions may be different from those that set limits today. We quantitatively examine a nine-year time series of temperature records relevant to the body temperatures of intertidal mussels as measured using biomimetic sensors. Specifically, we explore how a 'climatology' of body temperatures, as opposed to long-term records of habitat-level parameters such as air and water temperatures, can be used to extrapolate meaningful spatial and temporal patterns of physiological stress. Using different metrics that correspond to various aspects of physiological stress (seasonal means, cumulative temperature and the return time of extremes) we show that these potential environmental stressors do not always occur in synchrony with one another. Our analysis also shows that patterns of animal temperature are not well correlated with simple, commonly used metrics such as air temperature. Detailed physiological studies can provide guidance to predicting the effects of global climate change on natural ecosystems but only if we concomitantly record, archive and model environmental signals at appropriate scales.

Variation in the sensitivity of organismal body temperature to climate change over local and geographic scales.

Global climate change is expected to have broad ecological consequences for species and communities. Attempts to forecast these consequences usually assume that changes in air or water temperature will translate into equivalent changes in a species' organismal body temperature. This simple change is unlikely because an organism's body temperature is determined by a complex series of interactions between the organism and its environment. Using a biophysical model, validated with 5 years of field observations, we examined the relationship between environmental temperature change and body temperature of the intertidal mussel Mytilus californianus over 1,600 km of its geographic distribution. We found that at all locations examined simulated changes in air or water temperature always produced less than equivalent changes in the daily maximum mussel body temperature. Moreover, the magnitude of body temperature change was highly variable, both within and among locations. A simulated 1 degrees C increase in air or water temperature raised the maximum monthly average of daily body temperature maxima by 0.07-0.92 degrees C, depending on the geographic location, vertical position, and temperature variable. We combined these sensitivities with predicted climate change for 2100 and calculated increases in monthly average maximum body temperature of 0.97-4.12 degrees C, depending on location and climate change scenario. Thus geographic variation in body temperature sensitivity can modulate species' experiences of climate change and must be considered when predicting the biological consequences of climate change.

Life at the edge: an experimental study of a poleward range boundary.

Experimental studies of biogeographic processes are important, but rarely attempted because of the logistical challenges of research at large spatial scales. I used a series of large-scale transplant experiments to investigate the mechanisms controlling species abundance near a poleward range boundary. The intertidal limpet Collisella scabra experiences a 100-fold decline in abundance over the northernmost 300 km of its range. Temperature and food supply both strongly influenced individual survival, growth, and maturation. Regression analysis also revealed significant interactions among these conditions: the effect of one could not be predicted without knowing the level of the other. But these relationships could not explain geographic abundance patterns. Instead, individual limpets were highly successful at sites with relatively low abundance. These results suggest that, even though temperature is important to the success of individual C. scabra populations, the primary effect of warming temperatures under climate change may not be a shift in geographic distribution.