16 research outputs found

    Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives

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    Purpose: Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood

    Medication-Taking Practices of Patients on Antiretroviral HIV Therapy: Control, Power, and Intentionality

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    Among people living with HIV (PLWH), adherence to antiretroviral therapy (ART) is crucial for health, but patients face numerous challenges achieving sustained lifetime adherence. We conducted six focus groups with 56 PLWH regarding ART adherence barriers and collected sociodemographics and ART histories. Participants were recruited through clinics and AIDS service organizations in North Carolina. Dedoose software was used to support thematic analysis. Participants were 59% male, 77% black, aged 23–67 years, and living with HIV 4–20 years. Discussions reflected the fluid, complex nature of ART adherence. Maintaining adherence required participants to indefinitely assert consistent control across multiple areas including: their HIV disease, their own bodies, health care providers, and social systems (e.g., criminal justice, hospitals, drug assistance programs). Participants described limited control over treatment options, ART's impact on their body, and inconsistent access to ART and subsequent inability to take ART as prescribed. When participants felt they had more decision-making power, intentionally choosing whether and how to take ART was not exclusively a decision about best treating HIV. Instead, through these decisions, participants tried to regain some amount of power and control in their lives. Supportive provider relationships assuaged these struggles, while perceived side-effects and multiple co-morbidities further complicated adherence. Adherence interventions need to better convey adherence as a continuous, changing process, not a fixed state. A perspective shift among care providers could also help address negative consequences of the perceived power struggles and pressures that may drive patients to exert control via intentional medication taking practices

    Satellite sensor requirements for monitoring essential biodiversity variables of coastal ecosystems

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    © The Author(s), 2018. This article is distributed under the terms of the Creative Commons Attribution License. The definitive version was published in Ecological Applications 28 (2018): 749-760, doi: 10.1002/eap.1682.The biodiversity and high productivity of coastal terrestrial and aquatic habitats are the foundation for important benefits to human societies around the world. These globally distributed habitats need frequent and broad systematic assessments, but field surveys only cover a small fraction of these areas. Satellite‐based sensors can repeatedly record the visible and near‐infrared reflectance spectra that contain the absorption, scattering, and fluorescence signatures of functional phytoplankton groups, colored dissolved matter, and particulate matter near the surface ocean, and of biologically structured habitats (floating and emergent vegetation, benthic habitats like coral, seagrass, and algae). These measures can be incorporated into Essential Biodiversity Variables (EBVs), including the distribution, abundance, and traits of groups of species populations, and used to evaluate habitat fragmentation. However, current and planned satellites are not designed to observe the EBVs that change rapidly with extreme tides, salinity, temperatures, storms, pollution, or physical habitat destruction over scales relevant to human activity. Making these observations requires a new generation of satellite sensors able to sample with these combined characteristics: (1) spatial resolution on the order of 30 to 100‐m pixels or smaller; (2) spectral resolution on the order of 5 nm in the visible and 10 nm in the short‐wave infrared spectrum (or at least two or more bands at 1,030, 1,240, 1,630, 2,125, and/or 2,260 nm) for atmospheric correction and aquatic and vegetation assessments; (3) radiometric quality with signal to noise ratios (SNR) above 800 (relative to signal levels typical of the open ocean), 14‐bit digitization, absolute radiometric calibration <2%, relative calibration of 0.2%, polarization sensitivity <1%, high radiometric stability and linearity, and operations designed to minimize sunglint; and (4) temporal resolution of hours to days. We refer to these combined specifications as H4 imaging. Enabling H4 imaging is vital for the conservation and management of global biodiversity and ecosystem services, including food provisioning and water security. An agile satellite in a 3‐d repeat low‐Earth orbit could sample 30‐km swath images of several hundred coastal habitats daily. Nine H4 satellites would provide weekly coverage of global coastal zones. Such satellite constellations are now feasible and are used in various applications.National Center for Ecological Analysis and Synthesis (NCEAS); National Aeronautics and Space Administration (NASA) Grant Numbers: NNX16AQ34G, NNX14AR62A; National Ocean Partnership Program; NOAA US Integrated Ocean Observing System/IOOS Program Office; Bureau of Ocean and Energy Management Ecosystem Studies program (BOEM) Grant Number: MC15AC0000

    Satellite Sensor Requirements for Monitoring Essential Biodiversity Variables of Coastal Ecosystems

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    The biodiversity and high productivity of coastal terrestrial and aquatic habitats are the foundation for important benefits to human societies around the world. These globally distributed habitats need frequent and broad systematic assessments, but field surveys only cover a small fraction of these areas. Satellite-based sensors can repeatedly record the visible and near-infrared reflectance spectra that contain the absorption, scattering, and fluorescence signatures of functional phytoplankton groups, colored dissolved matter, and particulate matter near the surface ocean, and of biologically structured habitats (floating and emergent vegetation, benthic habitats like coral, seagrass, and algae). These measures can be incorporated into Essential Biodiversity Variables (EBVs), including the distribution, abundance, and traits of groups of species populations, and used to evaluate habitat fragmentation. However, current and planned satellites are not designed to observe the EBVs that change rapidly with extreme tides, salinity, temperatures, storms, pollution, or physical habitat destruction over scales relevant to human activity. Making these observations requires a new generation of satellite sensors able to sample with these combined characteristics: (1) spatial resolution on the order of 30 to 100-m pixels or smaller; (2) spectral resolution on the order of 5 nm in the visible and 10 nm in the short-wave infrared spectrum (or at least two or more bands at 1,030, 1,240, 1,630, 2,125, and/or 2,260 nm) for atmospheric correction and aquatic and vegetation assessments; (3) radiometric quality with signal to noise ratios (SNR) above 800 (relative to signal levels typical of the open ocean), 14-bit digitization, absolute radiometric calibratio

    Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives

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    Purpose: Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood. Methods: We interviewed 20 LTF experts (MDs, RNs, social workers, education specialists, psychologists) from 10 Children's Oncology Group-affiliated institutions, and analyzed data using grounded theory and content analysis techniques. Results: Participants described the complexity of survivors' healthcare transitions. Survivors had pressing educational needs in multiple domains, and imparting the need for prevention was challenging. Multidisciplinary LTF teams focused on prevention and self-management. Care and decisions about transfer were individualized based on survivors' health risks, developmental issues, and family contexts. An interplay of provider and institutional factors, some of which were potentially modifiable, also influenced how transitions were managed. Interviewees rarely collaborated with community primary care providers to comanage patients. Communication systems and collective norms about sharing care limited comanagement capacity. Interviewees described staffing practices, policies, and informal initiatives they found reduced attrition. Conclusions: Results suggest that survivors will benefit from care models that better connect patients, survivorship experts, and community providers for uninterrupted LTF across transitions. We propose research priorities, framing attrition from LTF as a public health concern, transition as the central challenge in LTF, and transition readiness as a multilevel concept

    Medication-Taking Practices of Patients on Antiretroviral HIV Therapy: Control, Power, and Intentionality

    No full text
    Among people living with HIV (PLWH), adherence to antiretroviral therapy (ART) is crucial for health, but patients face numerous challenges achieving sustained lifetime adherence. We conducted six focus groups with 56 PLWH regarding ART adherence barriers and collected sociodemographics and ART histories. Participants were recruited through clinics and AIDS service organizations in North Carolina. Dedoose software was used to support thematic analysis. Participants were 59% male, 77% black, aged 23–67 years, and living with HIV 4–20 years. Discussions reflected the fluid, complex nature of ART adherence. Maintaining adherence required participants to indefinitely assert consistent control across multiple areas including: their HIV disease, their own bodies, health care providers, and social systems (e.g., criminal justice, hospitals, drug assistance programs). Participants described limited control over treatment options, ART's impact on their body, and inconsistent access to ART and subsequent inability to take ART as prescribed. When participants felt they had more decision-making power, intentionally choosing whether and how to take ART was not exclusively a decision about best treating HIV. Instead, through these decisions, participants tried to regain some amount of power and control in their lives. Supportive provider relationships assuaged these struggles, while perceived side-effects and multiple co-morbidities further complicated adherence. Adherence interventions need to better convey adherence as a continuous, changing process, not a fixed state. A perspective shift among care providers could also help address negative consequences of the perceived power struggles and pressures that may drive patients to exert control via intentional medication taking practices

    ‘It’s Like You Don’t Have a Roadmap Really’: Using an Antiracism Framework to Analyze Patients’ Encounters in the Cancer System

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    BACKGROUND: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients’ cancer center experiences, explore racial differences in experiences, and inform systems-level interventions. METHODS: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences. RESULTS: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care. CONCLUSIONS: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients’ interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants’ insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities
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