Toward data-driven, dynamical complex systems approaches to disaster resilience.

With rapid urbanization and increasing climate risks, enhancing the resilience of urban systems has never been more important. Despite the availability of massive datasets of human behavior (e.g., mobile phone data, satellite imagery), studies on disaster resilience have been limited to using static measures as proxies for resilience. However, static metrics have significant drawbacks such as their inability to capture the effects of compounding and accumulating disaster shocks; dynamic interdependencies of social, economic, and infrastructure systems; and critical transitions and regime shifts, which are essential components of the complex disaster resilience process. In this article, we argue that the disaster resilience literature needs to take the opportunities of big data and move toward a different research direction, which is to develop data-driven, dynamical complex systems models of disaster resilience. Data-driven complex systems modeling approaches could overcome the drawbacks of static measures and allow us to quantitatively model the dynamic recovery trajectories and intrinsic resilience characteristics of communities in a generic manner by leveraging large-scale and granular observations. This approach brings a paradigm shift in modeling the disaster resilience process and its linkage with the recovery process, paving the way to answering important questions for policy applications via counterfactual analysis and simulations.

Awareness, Care and Treatment In Obesity maNagement to inform Haemophilia Obesity Patient Empowerment (ACTION-TO-HOPE): Results of a survey of US patients with haemophilia and obesity (PwHO) and their partners and caregivers.

BACKGROUND: The ACTION study identified barriers to initiating and maintaining weight loss in patients with obesity; however, joint-related issues (pain, mobility and bleeding) may affect perceptions of patients with haemophilia and obesity (PwHO). AIM: To identify patient and caregiver insights on the unique challenges of PwHO. METHODS: Following IRB approval, adults who self-identified as PwHO, spouses/partners of adult PwHO, and caregivers of adolescent PwHO (aged 12-17 years) completed an online survey between December 2017 and April 2018. RESULTS: Respondents included 124 adult PwHO, 45 spouses/partners and 42 caregivers. By calculated BMI, most adults were overweight (43%) or had obesity (51%); this differed from self-reported weight category. PwHO goals were improving health conditions (60%), having more energy (54%), reducing risks of weight (46%), and losing any weight (44%). Issues related to joint health were secondary for PwHO but frequently reported by spouses/parents. Most perceived weight loss to be a high priority (66%) and their responsibility (64%) but required a complete lifestyle change (63%). Most anticipated that weight loss would reduce joint pain (62%), bleeding (58%) and factor use (52%) and increase mobility (62%). Weight discussions with healthcare providers (HCPs) were commonly reported (51%). HCP discussions targeted improving health conditions (46%), achieving any weight loss (44%), being more active (73%) and improving eating habits (72%). Most PwHO (65%) perceived obesity as a disease and believe that 10% weight loss would be extremely beneficial (78%). In the past 5 years, 80% discussed being overweight and 68% losing weight; a minority reported being successful (9%) or somewhat successful (38%) with weight loss. More realistic or specific (51%/47%) goals, resources (46%), referrals to weight-loss programmes (41%) or dietitians (38%), meals or recipes (54%/50%), local or national (42%/41%) programmes for PwHO and success stories of PwHO (40%) are needed or would be helpful. CONCLUSIONS: PwHO, spouse/partners and caregivers exhibited awareness of general and haemophilia-specific consequences of excess body weight. Most have tried general approaches to improve eating and increase activity with little success and desire more education on weight management and more details on specific actionable recommendations distributed through existing haemophilia channels. These insights will better inform the creation of weight-loss programmes for this community.

Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study.

The psychosocial impact of hemophilia on work was recently investigated in the Hemophilia Experiences, Results and Opportunities (HERO) study. The findings revealed that hemophilia had an impact for adults with moderate/severe hemophilia and caregivers of children with hemophilia. HERO did not specifically evaluate impact on education in adults/children with mild/moderate hemophilia or the impact on employment of spouses/partners of caregivers of affected children. The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study evaluated the impact of hemophilia on the lives of adult men/women with mild-severe hemophilia B and caregivers of boys/girls with hemophilia B and their spouses/partners. Many adults with hemophilia B (94%) reported that hemophilia had a negative effect on their ability to complete a formal education, often attributed to the inability to attend or concentrate in school as a result of hemophilia-related bleeding or pain. Most adults with hemophilia B (95%) and caregivers/partners (89%/84%) indicated that hemophilia had a negative impact on employment. Most adults with hemophilia were employed (81%), with construction/manufacturing (35%) as the most frequently reported industry; many worked in jobs requiring manual labor (39%). Of those unemployed, 62% never worked, and those who stopped working reported that they left the workforce due to financial issues (59%), including insurance coverage/co-pays, or hemophilia-related issues (55%). Nearly one-third of caregivers voluntarily left the workforce to care for children with hemophilia. These results suggest a need to focus more effort on career counseling for adults with hemophilia B and caregivers of affected children, especially around mild/moderate hemophilia, as this population may not be as well informed regarding potential impact in school and the workplace.

Impact of mild to severe hemophilia on engagement in recreational activities by US men, women, and children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study.

The psychosocial impact of hemophilia on activities was recently investigated in the Hemophilia Experiences, Results and Opportunities (HERO) study (675 people with hemophilia and 561 caregivers of children with hemophilia in 10 countries). The impact of hemophilia B may not be accurately reflected in the HERO results, as ~75% of respondents described issues affecting males with hemophilia A. To address the needs of this population, the Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S) was developed as a pilot study in the United States in collaboration with the hemophilia community. The analysis reported here assessed engagement in recreational activities and changes to treatment regimens around activities as reported by 299 adults with hemophilia B and 150 caregivers of children with hemophilia B. Nearly all adults with hemophilia B (98%) experienced a negative impact on their participation in recreational activities due to hemophilia-related issues, and most caregivers (90%) reported that hemophilia B had a negative impact on their child's engagement in recreational activities. One of the main reasons identified for discontinuing past activities was the risk of bruising or bleeding (adults/children with hemophilia B, 49%/41%). In particular, adults with hemophilia B reported a history of activity-related bleeding, and most adults decreased their participation in high-risk activities as they aged. Substantial percentages of adults and children with hemophilia B (including mild/moderate severity) altered their treatment regimens to accommodate planned activities. These findings may help inform guidelines for individualizing treatment regimens around participation in recreational activities based on hemophilia severity, baseline factor level, and activity risk and intensity.

Unmet needs in the transition to adulthood: 18- to 30-year-old people with hemophilia.

Young adults with hemophilia face unique challenges during the transition to adulthood, including issues associated with switching from pediatric to adult hematology care, building mature interpersonal relationships, and establishing an independent career with an assurance of medical insurance coverage. A greater understanding of these challenges is essential for developing effective strategies to address the specific needs of this population. These challenges may be differentiated from those of older adults with hemophilia in large part because of more extensive childhood prophylaxis and safer factor products, resulting in fewer joint problems and lower rates of HIV and HCV infections. This analysis of the changing nature and unmet needs of today's young adults entering into adult hemophilia treatment centers, as well as potential strategies for optimally addressing these needs, was developed following roundtable discussions between patients, caregivers, hematologists, and other health care professionals participating in comprehensive care. Challenges identified among young adults with hemophilia include psychosocial issues related to maturity, personal responsibility, and increased independence, as well as concerns regarding when and with whom to share information about one's hemophilia, limited awareness of educational and financial resources, and a low perceived value of regular hematology care. The initiatives proposed herein highlight important opportunities for health care professionals at pediatric and adult hemophilia treatment centers, as well as national organizations, community groups, and career counselors, to address key unmet needs of this patient population.

Emerging therapies for hemophilia: a new era of care and the role of the interdisciplinary team.

The introduction of new hemophilia management therapies, targeting extended half-lives through bioengineering, ushers in an era of potential promise and increasing complexity, more so for those with hemophilia B than hemophilia A. Questions arise for patients, caregivers, and hemophilia treatment center (HTC) staff about how to assess and incorporate novel therapies and how to determine whether new therapies offer a distinct advantage over established treatment routines. Nurses and other interdisciplinary HTC staff are well positioned to assess, educate, and support patients and families in navigating this rapidly changing landscape. To support these challenging efforts, this review offers a perspective on issues affecting therapeutic transitions and provides tools to foster ongoing adherence.

Heat Risk Perceptions and Coping Strategies of the Unhoused.

The escalating awareness of heat-related risks and the associated imperative to enhance preparedness strategies at various levels has spurred a growing emphasis on disseminating knowledge about heat vulnerability. These efforts aim to equip diverse stakeholders with practical heat planning and forecasting tools. The success of these communication initiatives hinges on understanding the nuanced perceptions of risk and the priority assigned to addressing heat as a health risk. This paper delves explicitly into the unhoused population's risk perceptions and coping strategies. Acknowledged as one of the most underserved and vulnerable groups to extreme heat, unhoused individuals face prolonged exposure, a heightened frequency of mental and physical health issues, and limited coping resources during extreme heat events. Despite widespread acknowledgment of their vulnerability, little attention has been directed towards researching health behavior within this demographic about excessive heat. We developed a survey instrument using the theory of planned behavior (TPB) to bridge this gap. We collected quantitative survey data from unhoused populations in Columbia, South Carolina, an area of the United States that experiences extreme heat events and has a sizeable unhoused population. Using a series of hierarchical multiple regression models, our findings indicate that TPB variables predict the intention to avoid the heat while considering additional coping strategies common among unhoused individuals. These findings offer valuable insights for public health researchers, practitioners, and community officials engaged in direct interactions with unhoused populations, informing how this underserved group manages excessive heat exposure.

Spatial-temporal differences of COVID-19 vaccinations in the U.S.

Although the disparities in COVID-19 outcomes have been proved, they have not been explicitly associated with COVID-19 full vaccinations. This paper examines the spatial and temporal patterns of the county-level COVID-19 case rates, fatality rates, and full vaccination rates in the United States from December 24, 2020 through September 30, 2021. Statistical and geospatial analyses show clear temporal and spatial patterns of the progression of COVID-19 outcomes and vaccinations. In the relationship between two time series, the fatality rates series was positively related to past lags of the case rates series. At the same time, case rates series and fatality rates series were negatively related to past lags of the full vaccination rates series. The lag level varies across urban and rural areas. The results of partial correlation, ordinary least squares (OLS) and Geographically Weighted Regression (GWR) also confirmed that the existing COVID-19 infections and different sets of socioeconomic, healthcare access, health conditions, and environmental characteristics were independently associated with COVID-19 vaccinations over time and space. These results empirically identify the geographic health disparities with COVID-19 vaccinations and outcomes and provide the evidentiary basis for targeting pandemic recovery and public health mitigation actions. Supplementary Information: The online version contains supplementary material available at 10.1007/s44212-022-00019-9.

Degree and direction of overlap between social vulnerability and community resilience measurements.

An ongoing debate in academic and practitioner communities, centers on the measurement similarities and differences between social vulnerability and community resilience. More specifically, many see social vulnerability and community resilience measurements as conceptually and empirically the same. Only through a critical and comparative assessment can we ascertain the extent to which these measurement schemas empirically relate to one another. This paper uses two well-known indices-the social vulnerability index (SoVI) and the Baseline Resilience Indicators for Communities (BRIC) to address the topic. The paper employs spatio-temporal correlations to test for differences or divergence (negative associations) and similarities or convergence (positive associations), and the degree of overlap. These tests use continental U.S. counties, two timeframes (2010 and 2015), and two case study sub-regions (to identify changes in measurement associations going from national to regional scales given the place-based nature of each index). Geospatial analytics indicate a divergence with little overlap between SoVI and BRIC measurements, based on low negative correlation coefficients (around 30%) for both time periods. There is some spatial variability in measurement overlap, but less than 2% of counties show hot spot clustering of correlations of more than 50% in either year. The strongest overlap and divergence in both years occurs in few counties in California, Arizona, and Maine. The degree of overlap in measurements at the regional scale is greater in the Gulf Region (39%) than in the Southeast Atlantic region (21% in 2010; 28% in 2015) suggesting more homogeneity in Gulf Coast counties based on population and place characteristics. However, in both study areas SoVI and BRIC measurements are negatively associated. Given their inclusion in the National Risk Index, both social vulnerability and resilience metrics are needed to interpret the local community capacities in natural hazards risk planning, as a vulnerable community could be highly resilient or vice versa.

Adjusting statistical benchmark risk analysis to account for non-spatial autocorrelation, with application to natural hazard risk assessment.

We develop and study a quantitative, interdisciplinary strategy for conducting statistical risk analyses within the 'benchmark risk' paradigm of contemporary risk assessment when potential autocorrelation exists among sample units. We use the methodology to explore information on vulnerability to natural hazards across 3108 counties in the conterminous 48 US states, applying a place-based resilience index to an existing knowledgebase of hazardous incidents and related human casualties. An extension of a centered autologistic regression model is applied to relate local, county-level vulnerability to hazardous outcomes. Adjustments for autocorrelation embedded in the resiliency information are applied via a novel, non-spatial neighborhood structure. Statistical risk-benchmarking techniques are then incorporated into the modeling framework, wherein levels of high and low vulnerability to hazards are identified.

Temporal and spatial changes in social vulnerability to natural hazards.

During the past four decades (1960-2000), the United States experienced major transformations in population size, development patterns, economic conditions, and social characteristics. These social, economic, and built-environment changes altered the American hazardscape in profound ways, with more people living in high-hazard areas than ever before. To improve emergency management, it is important to recognize the variability in the vulnerable populations exposed to hazards and to develop place-based emergency plans accordingly. The concept of social vulnerability identifies sensitive populations that may be less likely to respond to, cope with, and recover from a natural disaster. Social vulnerability is complex and dynamic, changing over space and through time. This paper presents empirical evidence on the spatial and temporal patterns in social vulnerability in the United States from 1960 to the present. Using counties as our study unit, we found that those components that consistently increased social vulnerability for all time periods were density (urban), race/ethnicity, and socioeconomic status. The spatial patterning of social vulnerability, although initially concentrated in certain geographic regions, has become more dispersed over time. The national trend shows a steady reduction in social vulnerability, but there is considerable regional variability, with many counties increasing in social vulnerability during the past five decades.

Evaluating post-Katrina recovery in Mississippi using repeat photography.

Hurricane Katrina of August 2005 had extensive consequences for the state of Mississippi in the United States. Widespread infrastructure and property damage, massive social dislocation, and ecological loss remain among the many challenges faced by communities as they work towards 'normalcy'. This study employs repeat photography to understand differential recovery from Hurricane Katrina in Mississippi. Revealing change with conventional landscape photography, a process known as repeat photography, is common in the natural sciences. Simply stated, repeat photography is the practice of re-photographing the same scene as it appears in an earlier photograph. Photographs were taken at 131 sites every six months over a three-year period. Each photograph was assigned a recovery score and a spatially interpolated recovery surface was generated for each time period. The mapped and graphed results show disparities in the progression of recovery: some communities quickly entered the rebuilding process whereas others have lagged far behind.

Urban-rural differences in COVID-19 exposures and outcomes in the South: A preliminary analysis of South Carolina.

As the COVID-19 pandemic moved beyond the initial heavily impacted and urbanized Northeast region of the United States, hotspots of cases in other urban areas ensued across the country in early 2020. In South Carolina, the spatial and temporal patterns were different, initially concentrating in small towns within metro counties, then diffusing to centralized urban areas and rural areas. When mitigation restrictions were relaxed, hotspots reappeared in the major cities. This paper examines the county-scale spatial and temporal patterns of confirmed cases of COVID-19 for South Carolina from March 1st-September 5th, 2020. We first describe the initial diffusion of the new confirmed cases per week across the state, which remained under 2,000 cases until Memorial Day weekend (epi week 23) then dramatically increased, peaking in mid-July (epi week 29), and slowly declining thereafter. Second, we found significant differences in cases and deaths between urban and rural counties, partially related to the timing of the number of confirmed cases and deaths and the implementation of state and local mitigations. Third, we found that the case rates and mortality rates positively correlated with pre-existing social vulnerability. There was also a negative correlation between mortality rates and county resilience patterns, as expected, suggesting that counties with higher levels of inherent resilience had fewer deaths per 100,000 population.

Spatial Disparities of COVID-19 Cases and Fatalities in United States Counties.

This paper examines the spatial and temporal trends in county-level COVID-19 cases and fatalities in the United States during the first year of the pandemic (January 2020-January 2021). Statistical and geospatial analyses highlight greater impacts in the Great Plains, Southwestern and Southern regions based on cases and fatalities per 100,000 population. Significant case and fatality spatial clusters were most prevalent between November 2020 and January 2021. Distinct urban-rural differences in COVID-19 experiences uncovered higher rural cases and fatalities per 100,000 population and fewer government mitigation actions enacted in rural counties. High levels of social vulnerability and the absence of mitigation policies were significantly associated with higher fatalities, while existing community resilience had more influential spatial explanatory power. Using differences in percentage unemployment changes between 2019 and 2020 as a proxy for pre-emergent recovery revealed urban counties were hit harder in the early months of the pandemic, corresponding with imposed government mitigation policies. This longitudinal, place-based study confirms some early urban-rural patterns initially observed in the pandemic, as well as the disparate COVID-19 experiences among socially vulnerable populations. The results are critical in identifying geographic disparities in COVID-19 exposures and outcomes and providing the evidentiary basis for targeting pandemic recovery.

Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study.

BACKGROUND: The B-HERO-S study evaluated the impact of mild to severe hemophilia B on the lives of affected adults and children. Here, we assessed the impact of hemophilia B on relationships. METHODS: US adults with hemophilia B and caregivers of affected children completed separate online surveys that included questions regarding impact of the disease on interpersonal relationships. RESULTS: Most (88%) of the 299 adults completing the survey had mild to moderate hemophilia B. Of those, 54% were married or in a long-term relationship, and 44% were single. Most adults (87%) reported that hemophilia affected their ability to form close relationships with partners or prospective partners; 35% were very/quite dissatisfied with the support received from a previous partner. Nearly all participants (98%) were very/quite satisfied with the support received from their current partner. Most were very/quite satisfied with the support from family (87%) and friends (96%). Most participants reported a negative reaction or experience as a result of disclosing their hemophilia (friend/colleague/employer, 76%/80%/82%, respectively). Of 150 caregivers of children with mostly mild to moderate hemophilia (74%), 89% were married or in a long-term relationship, and most felt very well/quite supported by their partner (98%) and family (92%). Most felt very/quite satisfied with the support of teachers (94%), children at school (80%), and other adults in regular contact (72%). Most caregivers reported negative experiences telling a friend (76%) or having their child tell a friend (69%) about the child's hemophilia; 43% reported that their child was bullied because of his/her hemophilia. CONCLUSION: Although the impact of severe hemophilia on relationships has been reported in HERO and other studies, B-HERO-S suggested that mild to moderate hemophilia B also significantly influences relationships of affected men/women and boys/girls, especially in disclosing their diagnosis, selecting a partner, and feeling bullied by peers/colleagues.

Hemophilia and sexual health: results from the HERO and B-HERO-S studies.

BACKGROUND: Sexual health plays a primary role in quality of life (QoL) for many people, including those with hemophilia; however, there is little information available about sexual relationships and satisfaction in patients with hemophilia. METHODS: To address this issue, the Hemophilia Experiences, Results and Opportunities (HERO) and the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) studies included questions from the Male Sexual Health Questionnaire (MSHQ). RESULTS: Although these data were not statistically analyzed for comparisons between the 3 populations (HERO, HERO US only, and B-HERO-S), in general, participants in the HERO survey appeared to be more satisfied with their sexual relationship than participants in the B-HERO-S survey. In addition, many patients, especially those outside the United States, reported that they had not discussed sexual health with their doctor or other members of the hemophilia treatment center team. While the topic of sexual health has been infrequently explored in men with hemophilia, this is the first time it has been investigated in women with hemophilia. CONCLUSION: The results of these studies demonstrate that the impact of hemophilia extends to intimacy and suggest the need for large-scale studies in additional countries to explore further the factors associated with sexual health issues in people with hemophilia.

Correlations between patient-reported outcomes and self-reported characteristics in adults with hemophilia B and caregivers of children with hemophilia B: analysis of the B-HERO-S study.

PURPOSE: Pain, anxiety, depression, and other aspects of health-related quality of life (HRQoL) are important issues for people with hemophilia and caregivers of children with hemophilia. Patient-reported outcome (PRO) instruments may be used to assess aspects of HRQoL; however, the use of PROs in clinical management of patients with hemophilia is limited and inconsistent. The Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S) study evaluated the impact of hemophilia B on HRQoL and other psychosocial aspects in affected adults and caregivers of children with hemophilia B. This post hoc analysis assessed correlations between PRO scores and psychosocial questions commonly asked in comprehensive care settings among B-HERO-S respondents. PATIENTS AND METHODS: B-HERO-S consisted of two online surveys, one administered to adults with hemophilia B (n=299) and one administered to caregivers of children with hemophilia B (n=150). The adult survey included EQ-5D-5L with visual analog scale, BPI, HAL, and PHQ-9. The caregiver survey included PHQ-9 and GAD-7. Questions related to demographics, hemophilia treatment, and psychosocial questions asked in comprehensive care visits were also included in the surveys. A post hoc analysis was performed to assess correlations between responses to selected psychosocial questions with PRO scores. RESULTS: For adults with hemophilia B, greater pain severity and pain interference scores were associated with work-related problems, functional limitations, and relationship, psychological, and treatment issues. Significant correlations were also noted between some of these psychosocial outcomes and depressive symptoms. For caregivers, greater depression and anxiety were associated with employment issues, their child's functional, relationship, and psychological issues, having had difficulty or concerns with treatment/factor availability or affordability, and having less frequent HTC visits. CONCLUSION: High correlations were observed between PRO scores measuring pain, depression, and anxiety and questions commonly used in the comprehensive care setting to assess the psychosocial impact of hemophilia.