A novel approach to understanding and assessing the emotional side of type 1 diabetes: The Type 1-Diabetes Distress Assessment System.

AIMS: To describe the development of a novel, conceptually sound instrument with contemporary content for assessing diabetes distress (DD) among adults with type 1 diabetes. METHODS: Qualitative interviews with 15 adults and 7 clinicians were used to develop Core (intensity of DD emotional burden) and primary Source (key DD contributors) items. These were administered to a national sample recruited from the TCOYD Research Registry, T1D Exchange and our previous studies. Exploratory and confirmatory factor analyses were undertaken, along with reliability and construct validity studies, and cut-point analyses to determine elevated DD. RESULTS: Analyses based on 650 respondents yielded an 8-item Core DD scale (α = 0.95) and 10 2- or 3-item DD Source Scales (α range = 0.53-0.88): Financial Worries, Interpersonal Challenges, Management Difficulties, Shame, Hypoglycemia Concerns, Healthcare Quality, Lack of Diabetes Resources, Technology Challenges, Burden to Others and Worries about Complications. Core and Source scores were significantly associated with criterion variables: Higher DD scores were significantly linked with higher HbA1C, more frequent episodes of severe hypoglycaemia, missed boluses, and poorer quality of life (p > 0.001). A ≥2.0 scale cut-point to define elevated DD is suggested. CONCLUSIONS: The new T1-Diabetes Distress Assessment System demonstrated good reliability and validity, and with measures of both Core emotional burden and Sources of DD, it provides a contemporary, flexible and practical approach to assessing DD that can be used seamlessly to inform intervention for clinicians and researchers.

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study.

BACKGROUND: Previous literature has explored parent/caregiver perspectives and satisfaction with the health care transition (HCT) process for their adolescents and young adults with special health care needs (AYASHCN). Limited research has explored the opinion of health care providers and researchers on parent/caregiver outcomes associated with a successful HCT for AYASHCN. METHODS: A web-based survey was distributed through the international and interdisciplinary Health Care Transition Research Consortium listserv, which at the time of the survey was composed of 148 providers dedicated to optimizing the HCT of AYAHSCN. Participants responded to the open-ended question, 'What parent/caregiver-related outcome(s) would represent a successful healthcare transition?' Respondents included 109 providers (52 health care professionals, 38 social service professionals and 19 other). Responses were coded for emergent themes, and research suggestions were identified. RESULTS: Qualitative analyses identified two major themes: emotion- and behaviour-based outcomes. Emotion-based subthemes included relinquishing control of child's health management (n = 50, 45.9%) as well as parental satisfaction and confidence in their child's care and HCT (n = 42, 38.5%). Respondents also noted that parents/caregivers should experience an improved sense of well-being and decreased stress (n = 9, 8.2%) due to a successful HCT. Behaviour-based outcomes included early preparation and planning for HCT (n = 12, 11.0%) and parental instruction on the knowledge and skills necessary for their adolescent to independently manage their health (n = 10, 9.1%). CONCLUSIONS: Health care providers can assist parents/caregivers in learning strategies for instructing their AYASHCN about condition-related knowledge and skills as well as provide support for 'letting go' of the caregiver role during the HCT to adult-focused health services and adulthood. Communication between the AYASCH, their parents/caregivers and paediatric- and adult-focused providers needs to be consistent and comprehensive to ensure continuity of care and a successful HCT. We also offered strategies to address the outcomes suggested by the participants of this study.

Cost analysis of a coaching intervention to increase use of transradial percutaneous coronary intervention.

BACKGROUND: The transradial approach (TRA) to cardiac catheterization is safer than the traditional transfemoral approach (TFA), with similar clinical effectiveness. However, adoption of TRA remains low, representing less than 50% of catheterization procedures in 2015. Peer coaching is one approach to facilitate implementation; however, the costs of this strategy for cardiac procedures such as TRA are unclear. METHODS: We conducted an activity-based costing analysis (ABC) of a multi-center, hybrid type III implementation trial of a coaching intervention designed to increase the use of TRA. We identified the key activities of the intervention and determined the personnel, resources, and time needed to complete each activity. The personnel cost per hour and the activity duration were then used to estimate the cost of each activity and the total variable cost of the implementation. Fixed costs related to designing and running the implementation were calculated separately. All costs are reported in 2019 constant US dollars. RESULTS: The total cost of the coaching intervention implementation was $374,863. Of the total cost, $367,752 were variable costs due to travel, preparatory work, in-person coaching, post-intervention evaluation, and administrative time. We estimated fixed costs of $7112. The mean marginal cost of implementing the intervention at only one additional medical center was $52,536. CONCLUSIONS: We provide granular cost estimates of a conceptually rooted implementation strategy designed to increase the uptake of TRA for cardiac catheterization. We estimate that implementation costs stemming from the coaching approach would be offset after the conversion of approximately 409 to 1363 catheterizations from TFA to TRA. Our estimates provide benchmarks of the expected costs of implementing evidence-based, but expertise-intensive, cardiac procedures. TRIAL REGISTRATION: ISRCTN, ISRCTN66341299 . Registered 7 July 2020-retrospectively registered.

State-Level Evaluation of Washington's State Innovation Models (SIM) Initiative.

The Washington State Innovation Models (SIM) $65 million Test Award from the Center for Medicare & Medicaid Services' Innovation Center is a statewide intervention expected to improve population health, quality of care, and cost growth through four initiatives: 1) regional accountable communities of health linking health and social services to address local needs; 2) a practice transformation support hub; 3) four value-based payment reform pilot projects mainly in state employee and Medicaid populations; and 4) data and analytic infrastructure development to support system transformation with common measures. We develop a conceptual model based on diffusion theory and apply the RE-AIM evaluation framework (Reach, Effectiveness, Adoption, Implementation, and Maintenance) to structure our evaluation. We find that in three years (2016-2018), SIM built the infrastructure for system transformation and increased Washington's readiness for health system change in the next decade. However, the initiatives have not spread statewide, which may take over 10 years.

Cost considerations for adoption of diabetes technology are pervasive: A qualitative study of persons living with type 1 diabetes and their families.

BACKGROUND: Cost is a major consideration in the uptake and continued use of diabetes technology. With increasing use of automated insulin delivery systems, it is important to understand the specific cost-related barriers to technology adoption. In this qualitative analysis, we were interested in understanding and examining the decision-making process around cost and diabetes technology use. MATERIALS AND METHODS: Four raters coded transcripts of four stakeholder groups using inductive coding for each stakeholder group to establish relevant themes/nodes. We applied the Social Ecological Model in the interpretation of five thematic levels of cost. RESULTS: We identified five thematic levels of cost: policy, organizational, insurance, interpersonal and individual. Equitable diabetes technology access was an important policy-level theme. The insurance-level theme had multiple subthemes which predominantly carried a negative valence. Participants also emphasized the psychosocial burden of cost specifically identifying diabetes costs to their families, the guilt of diabetes related costs, and frustration in the time and involvement required to ensure insurance coverage. CONCLUSION: We found broad consensus in how cost is experienced by stakeholder groups. Cost considerations for diabetes technology uptake extended beyond finances to include time, cost to society, morality and interpersonal relationships. Cost also reflected an important moral principle tied to the shared desire for equitable access to diabetes technology. Knowledge of these considerations can help clinicians and researchers promote equitable device uptake while anticipating barriers for all persons living with type 1 diabetes and their families.

Suicide and Self-inflicted Injury in Diabetes: A Balancing Act.

Glycemic control in type 1 diabetes mellitus (T1DM) remains a challenge for many, despite the availability of modern diabetes technology. While technologies have proven glycemic benefits and may reduce excess mortality in some populations, both mortality and complication rates remain significantly higher in T1DM than the general population. Diabetes technology can reduce some burdens of diabetes self-management, however, it may also increase anxiety, stress, and diabetes-related distress. Additional workload associated with diabetes technologies and the dominant focus on metabolic control may be at the expense of quality-of-life. Diabetes is associated with significantly increased risk of suicidal ideation, self-harm, and suicide. The risk increases for those with diabetes and comorbid mood disorder. For example, the prevalence of depression is significantly higher in people with diabetes than the general population, and thus, people with diabetes are at even higher risk of suicide. The Center for Disease Control and Prevention reported a 24% rise in US national suicide rates between 1999 and 2014, the highest in 30 years. In the United Kingdom, 6000 suicides occur annually. Rates of preventable self-injury mortality stand at 29.1 per 100 000 population. Individuals with diabetes have an increased risk of suicide, being three to four times more likely to attempt suicide than the general population. Furthermore, adolescents aged 15 to 19 are most likely to present at emergency departments for self-inflicted injuries (9.6 per 1000 visits), with accidents, alcohol-related injuries, and self-harm being the strongest risk factors for suicide, the second leading cause of death among 10 to 24 year olds. While we have developed tools to improve glycemic control, we must be cognizant that the psychological burden of chronic disease is a significant problem for this vulnerable population. It is crucial to determine the psychosocial and behavioral predictors to uptake and continued use of technology in order to aid the identification of those individuals most likely to realize benefits of any intervention as well as those individuals who may require more support to succeed with technology.

From Wary Wearers to d-Embracers: Personas of Readiness to Use Diabetes Devices.

BACKGROUND: Diabetes devices such as insulin pumps and continuous glucose monitoring (CGM) are associated with improved health and quality of life in adults with type 1 diabetes (T1D). However, uptake remains low. The aim of this study was to develop different "personas" of adults with T1D in relation to readiness to adopt new diabetes technology. METHODS: Participants were 1498 T1D Exchange participants who completed surveys on barriers to uptake, technology attitudes, and other psychosocial variables. HbA1c data was available from the T1D Exchange for 30% of the sample. K-means cluster analyses grouped the sample by device barriers and attitudes. The authors assigned descriptive labels based on cluster characteristics. ANOVAs and chi-square tests assessed group differences by demographic and psychosocial variables (eg, diabetes duration, diabetes distress). RESULTS: Analyses yielded five distinct personas. The d-Embracers (54% of participants) endorsed few barriers to device use and had the highest rates of device use, lowest HbA1c, and were the least distressed. The Free Rangers (23%) had the most negative technology attitudes. The Data Minimalists (10%) used pumps but had lower CGM use and did not want more diabetes information. The Wary Wearers (11%) had lower overall device use, were younger, more distressed, endorsed many barriers, and had higher HbA1c. The High Distress (3%) group members were the youngest, had the shortest diabetes duration, reported the most barriers, and were the most distressed. CONCLUSION: These clinically meaningful personas of device readiness can inform tailored interventions targeting barriers and psychosocial needs to increase device uptake.

Implementation of Depression Screening and Global Health Assessment in Pediatric Subspecialty Clinics.

PURPOSE: Adolescents with chronic illness face greater risk of psychosocial difficulties, complicating disease management. Despite increased calls to screen for patient-reported outcomes, clinical implementation has lagged. Using quality improvement methods, this study aimed to investigate the feasibility of standardized screening for depression and assessment of global health and to determine recommended behavioral health follow-up, across three pediatric subspecialty clinics. METHODS: A total of 109 patients aged 12-22 years (median = 16.6) who were attending outpatient visits for treatment of diabetes (80% type 1), inflammatory bowel disease, or cystic fibrosis completed the 9-item Patient Health Questionnaire (PHQ-9) depression and Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Global Health measures on electronic tablets. Patients screening positive on the PHQ-9 received same-day behavioral health assessment and regular phone check-ins to facilitate necessary follow-up care. RESULTS: Overall, 89% of 122 identified patients completed screening during a 6-month window. Patients completed measures in a timely manner (within 3 minutes) without disruption to clinic flow, and they rated the process as easy, comfortable, and valuable. Depression scores varied across disease type. Patients rated lower global health relative to a previously assessed validation cohort. Depression and global health related significantly to certain medical outcomes. Fifteen percent of patients screened positive on the PHQ-9, of whom 50% confirmed attending behavioral health appointments within 6 months of screening. CONCLUSIONS: A standardized depression and global health assessment protocol implemented across pediatric subspecialties was feasible and effective. Universal behavioral health screening for adolescents and young adults living with chronic disease is necessary to meet programmatic needs in pediatric subspecialty clinics.

Diabetes in ethnically diverse youth: disparate burden and intervention approaches.

There is a rising prevalence of diabetes in youth and children, and the burden of this epidemic has shifted from primarily one affecting white youth to now affecting multiple ethnicities. As the incidence and prevalence of diabetes rise in ethnically diverse youth, indices of health and care in these populations are important to examine to understand the state of disparities and address them. Research reviewed indicates that there is evidence of disparities in glycemic control, as well as shortand long-term complications. Multisystemic factors contributing to these disparities include: 1) individual risk factors, 2) contextual risk factors, and 3) systemic risk factors. Interventions developed specifically to address these disparities, those that are tailored for these groups, and those that simply include ethnically diverse youth in their analyses are discussed below. Implications for future research and clinical practice are discussed.

Vector control programs in Saint Johns County, Florida and Guayas, Ecuador: successes and barriers to integrated vector management.

BACKGROUND: Vector-borne diseases (VBDs) and mosquito control programs (MCPs) diverge in settings and countries, and lead control specialists need to be aware of the most effective control strategies. Integrated Vector Management (IVM) strategies, once implemented in MCPs, aim to reduce cost and optimize protection of the populations against VBDs. This study presents a strengths, weaknesses, opportunities, and threats (SWOT) analysis to compare IVM strategies used by MCPs in Saint Johns County, Florida and Guayas, Ecuador. This research evaluates MCPs strategies to improve vector control activities. METHODS: Methods included descriptive findings of the MCP operations. Information was obtained from vector control specialists, directors, and residents through field trips, surveys, and questionnaires. Evaluations of the strategies and assets of the control programs where obtained through SWOT analysis and within an IVM approach. RESULTS: Organizationally, the Floridian MCP is a tax-based District able to make decisions independently from county government officials, with the oversight of an elected board of commissioners. The Guayas program is directed by the country government and assessed by non-governmental organizations like the World health Organization. Operationally, the Floridian MCP conducts entomological surveillance and the Ecuadorian MCP focuses on epidemiological monitoring of human disease cases. Strengths of both MCPs were their community participation and educational programs. Weaknesses for both MCPs included limitations in budgets and technical capabilities. Opportunities, for both MCPs, are additional funding and partnerships with private, non-governmental, and governmental organizations. Threats experienced by both MCPs included political constraints and changes in the social and ecological environment that affect mosquito densities and control efforts. IVM pillars for policy making were used to compare the information among the programs. Differences included how the Ecuadorian MCP relies heavily on the community for vector control while the American MCP relies on technologies and research. CONCLUSION: IVM based recommendations direct health policy leaders toward improving surveillance systems both entomologically and epidemiologically, improving community risk perceptions by integrating components of community participation, maximizing resources though the use of applied research, and protecting the environment by selecting low-risk pesticides. Outcomes of the research revealed that inter-sectorial and multidisciplinary interventions are critical to improve public health.

Pre-earthquake burden of illness and postearthquake health and preparedness in veterans.

BACKGROUND: During an earthquake, vulnerable populations, especially those with chronic conditions, are more susceptible to adverse, event-induced exacerbation of chronic conditions such as limited access to food and water, extreme weather temperatures, and injury. These circumstances merit special attention when health care facilities and organizations prepare for and respond to disasters. METHODS: This study explores the relationship between pre-earthquake burden of illness and post earthquake health-related and preparedness factors in the US. Data from a cohort of male veterans who were receiving care at the Sepulveda Veterans Affairs Medical Center (VAMC) in Los Angeles, California USA during the 1994 Northridge earthquake were analyzed. RESULTS: Veterans with one or more chronic conditions were more likely to report pain lasting two or more days, severe mental/emotional stress for more than two weeks, broken/lost medical equipment, having difficulty refilling prescriptions, and being unable to get medical help following the quake compared to veterans without chronic conditions. In terms of personal emergency preparedness, however, there was no association between burden of illness and having enough food or water for at least 24 hours after the earthquake. CONCLUSION: The relationship that exists between health care providers, including both individual providers and organizations like the US Department of Veterans Affairs (VA), and their vulnerable, chronically-ill patients affords providers the unique opportunity to deliver critical assistance that could make this vulnerable population better prepared to meet their post disaster health-related needs. This can be accomplished through education about preparedness and the provision of easier access to medical supplies. Disaster plans for those who are burdened with chronic conditions should meet their social needs in addition to their psychological and physical needs.

Confidence in the fairness of local public health systems' response to disasters: the US Veterans' perspective.

OBJECTIVE: The effectiveness of local public health systems in emergency management depends on trust from the entire community. However, the failure of some government agencies to respond effectively to several major disasters has had a disproportionate impact on certain groups-racial/ethnic minorities, in particular-that are well-represented in the veteran population. Many veterans belong to multiple vulnerable populations at greater risk of harm during disasters. This study examines confidence that local public health systems will respond fairly to disasters in a diverse sample of US veterans. METHODS: This study is an analysis of cross-sectional data on 5955 veterans in the 2009 California Health Interview Survey. Respondents were asked about their confidence that public health systems would respond fairly to their needs in the event of a disaster, regardless of their race/ethnicity or other personal characteristics. Multivariable regression analysis was used to identify variables on respondent characteristics that were independently associated with confidence. The hypothesis was that there would be less confidence in county public health systems among respondents who were racial/ethnic minorities, had less than a college degree, and were of low-income backgrounds. RESULTS: Approximately 79% of veterans were confident that public health systems would respond fairly. The hypothesis was unsupported, with no differences in confidence by race/ethnicity, education, or income. Also, no differences were noted between men and women or between veterans with and without disabilities. However, confidence was associated with continent of birth, age, homeownership, and marital status. CONCLUSION: If confidence affects veterans' willingness to accept disaster preparedness communications or to give proper consideration to recommended emergency countermeasures, then local health departments that issue such information to veterans are not likely to encounter barriers by race/ethnicity, income, education, disability status, or gender.

Health and psychosocial outcomes in U.S. adult patients with diabetes from diverse ethnicities.

Within the United States, diabetes is a serious public health concern and patients with diabetes are more likely to experience clinical depression, psychological distress, and depressive symptoms than those without. Negative psychosocial factors are associated with poorer diabetes management and glycemic control. Overall, both the rates of diabetes and related psychological distress are greater for persons of diverse ethnicities than for non-Latino whites, and have reached epidemic proportions in certain groups. The following article will provide an overview across ethnicities of the rates of diabetes, health outcomes, psychosocial outcomes, and unique cultural and linguistic challenges that contribute to disparities within US diabetes patients of diverse ethnicities. Using this information, our hope is that health care practitioners and researchers alike can better respond to the psychosocial needs of ethnically diverse patients.