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1.
J Palliat Med ; 2024 Feb 02.
Article in English | MEDLINE | ID: mdl-38306163

ABSTRACT

Relational autonomy is a concept that describes the interdependent nature of decision making by individuals. Relational autonomy is distinct from the traditional concept of autonomy, which asserts the need for each individual to make choices based on their own values and without influence by others. We present a case in which a patient made decisions that appeared contrary to his own desires. The case raises questions about the line between appropriate and coercive family influence. We also explore the moral distress generated by the attempt to reconcile his expressed desires and the decisions he made. We propose that examining the case with a relational autonomy lens may have helped clinical staff understand his decision and thus mitigate moral distress.

2.
Ther Adv Infect Dis ; 10: 20499361231197065, 2023.
Article in English | MEDLINE | ID: mdl-37693858

ABSTRACT

Background: People who inject drugs (PWID) are at risk for severe bacterial and fungal infections including skin and soft tissue infections, endocarditis, and osteomyelitis. PWID have high rates of self-directed discharge and are often not offered outpatient antimicrobial therapies, despite studies showing their efficacy and safety in PWID. This study fills a gap in knowledge of patient and community partner perspectives on treatment and discharge decision making for injection drug use (IDU)-associated infections. Methods: We conducted semi-structured interviews with patients (n = 10) hospitalized with IDU-associated infections and community partners (n = 6) in the Portland, Maine region. Community partners include peer support workers at syringe services programs (SSPs) and outreach specialists working with PWID. We transcribed and thematically analyzed interviews to explore perspectives on three domains: perspectives on long-term hospitalization, outpatient treatment options, and patient involvement in decision making. Results: Participants noted that stigma and inadequate pain management created poor hospitalization experiences that contributed to self-directed discharge. On the other hand, patients reported hospitalization provided opportunities to connect to substance use disorder (SUD) treatment and protect them from outside substance use triggers. Many patients expressed interest in outpatient antimicrobial treatment options conditional upon perceived efficacy of the treatment, perceived ability to complete treatment, and available resources and social support. Finally, both patients and community partners emphasized the importance of autonomy and inclusion in medical decision making. Although some participants acknowledged their SUD, withdrawal symptoms, or undertreated pain might interfere with decision making, they felt these medical conditions were not justification for health care professionals withholding treatment options. They recommended open communication to build trust and reduce harms. Conclusion: Patients with IDU-associated infections desire autonomy, respect, and patient-centered care from healthcare workers, and may self-discharge when needs or preferences are not met. Involving patients in treatment decisions and offering outpatient antimicrobial options may result in better outcomes. However, patient involvement in decision making may be complicated by many contextual factors unique to each patient, suggesting a need for shared decision making to meet the needs of hospitalized patients with IDU-associated infections.

3.
Ther Adv Infect Dis ; 10: 20499361231165108, 2023.
Article in English | MEDLINE | ID: mdl-37034032

ABSTRACT

Background: The prevalence of injection drug use (IDU)-associated infections and associated hospitalizations has been increasing for nearly two decades. Due to issues ranging from ongoing substance use to peripherally inserted central catheter safety, many clinicians find discharge decision-making challenging. Typically, clinicians advise patients to remain hospitalized for several weeks for intravenous antimicrobial treatment; however, some patients may desire other antimicrobial treatment options. A structured conversation guide, delivered by infectious disease physicians, intended to inform hospital discharge decisions has the potential to enhance patient participation in decisions. We developed a conversation guide in order to: (1) investigate its feasibility and acceptability and (2) examine experiences, outcomes, and lessons learned from use of the guide. Methods: We interviewed physicians after they each piloted the conversation guide with two patients. We interviewed patients immediately after the conversation and again 4-6 weeks later. Two analysts indexed transcriptions and used the framework method to identify and organize relevant information. We conducted retrospective chart review to corroborate and contextualize qualitative data. Results: Eight patients and four infectious disease physicians piloted the conversation guide. All patients (N = 8) completed antimicrobial treatment. Nearly all participants believed the conversation guide was important for incorporating patient values and preferences. Patients reported an increased sense of autonomy, but felt post-discharge needs could be better addressed. Physician participants identified the guide's long length and inclusion of pain management as areas for improvement. Conclusions: A novel conversation guide to inform hospital discharge decision-making for patients with IDU-associated infections was feasible, acceptable, and fostered the incorporation of patient preferences and values into decisions. While we identified areas for improvement, overall participants believed that this novel conversation guide helped to improve patient care and autonomy.

4.
J Palliat Med ; 26(6): 849-855, 2023 06.
Article in English | MEDLINE | ID: mdl-36525521

ABSTRACT

As palliative care (PC) programs rapidly grow and expand across settings, the need to measure, improve, and standardize high-quality PC has also grown. The electronic health record (EHR) is a key component of these efforts as a central hub of care delivery and a repository of patient and system data. Deliberate efforts to leverage the EHR for PC quality improvement (QI) can help PC programs and health systems improve care for patients with serious illnesses. This article, written by clinicians with experience in QI, informatics, and clinical program development, provides practical tips and guidance on EHR strategies and tools for QI and quality measurement.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans , Quality Improvement , Electronic Health Records , Data Collection
5.
Ther Adv Infect Dis ; 9: 20499361221126868, 2022.
Article in English | MEDLINE | ID: mdl-36225855

ABSTRACT

Background: Patients with injection drug use (IDU)-associated infections traditionally experience prolonged hospitalizations, which often result in negative experiences and bad outcomes. Harm reduction approaches that value patient autonomy and shared decision-making regarding outpatient treatment options may improve outcomes. We sought to identify health care professionals (HCPs) perspectives on the barriers to offering four different options to hospitalized people who use drugs (PWUD): long-term hospitalization, oral antibiotics, long-acting antibiotics at an infusion center, and outpatient parenteral antibiotics. Methods: We recruited HCPs (n = 19) from a single tertiary care center in Portland, Maine. We interviewed HCPs involved with discharge decision-making and other HCPs involved in the specialized care of PWUD. Semi-structured interviews elicited lead HCP values, preferences, and concerns about presenting outpatient antimicrobial treatment options to PWUD, while support HCPs provided contextual information. We used the iterative categorization approach to code and thematically analyze transcripts. Results: HCPs were willing to present outpatient treatment options for patients with IDU-associated infections, yet several factors contributed to reluctance. First, insufficient resources, such as transportation, may make these options impractical. However, HCPs may be unaware of existing community resources or viable treatment options. They also may believe the hospital protects patients, and that discharging patients into the community exposes them to structural harms. Some HCPs are concerned that patients with substance use disorder will not make 'good' decisions regarding outpatient antimicrobial options. Finally, there is uncertainty about how responsibility for offering outpatient treatment is shared across changing care teams. Conclusion: HCPs perceive many barriers to offering outpatient care for people with IDU-associated infections, but with appropriate interventions to address their concerns, may be open to considering more options. This study provides important insights and contextual information that can help inform specific harm reduction interventions aimed at improving care of people with IDU-associated infections.

6.
J Hosp Med ; 17(10): 819-826, 2022 10.
Article in English | MEDLINE | ID: mdl-35920080

ABSTRACT

BACKGROUND: During the COVID-19 pandemic, hospitals did not allow caregiver visitation. Little is known about how caregivers' absence affected patients' care. OBJECTIVE: This study aimed to describe visitation restrictions' impact on patients and their caregivers experiences. DESIGN: We used a sequential explanatory mixed-methods study design. First, we randomly selected 200 adult patients with cancer or heart failure hospitalized before (n = 100) and during visitor restrictions (n = 100) and abstracted data from the electronic medical record on communication between medical teams and caregivers and the topics discussed. Results from the quantitative analysis guided our thematic analysis of semi-structured interviews conducted with a subsample of patients hospitalized during visitor restrictions and their caregivers to understand the impact of visitor restrictions on their experiences. RESULTS: Compared to prerestrictions, caregivers under visitation restrictions communicated less frequently with the medical team (29% vs. 37% of hospitalized days; p = .04), fewer received discharge counseling (37% vs. 52%; p = .04), and disproportionately more had no contact with the medical team (36% vs. 17%; p < .01). Video conferencing was documented for caregivers of only five patients. Qualitative analysis revealed that both caregivers and patients experienced emotional distress, increased conflict, and decreased perception of quality of care because of visitation restrictions. CONCLUSIONS: Hospital visitor restrictions significantly reduced caregivers' communication with patients' medical team, causing caregivers and patients emotional distress. Protocols that facilitate communication between caregivers and care teams may benefit caregivers who cannot be physically present at care facilities, including distance caregivers.


Subject(s)
COVID-19 , Caregivers , Adult , Caregivers/psychology , Hospitalization , Humans , Pandemics , Patient Discharge
7.
Harm Reduct J ; 19(1): 80, 2022 07 22.
Article in English | MEDLINE | ID: mdl-35869523

ABSTRACT

BACKGROUND: The impact of public health policies during the COVID-19 pandemic on people who inject drugs (PWID) has varied across regions. In other countries, recent research has shown that PWID access to harm reduction services, despite rapid adaptations, has been negatively impacted. Our study describes these impacts in a rural state. METHODS: We conducted semi-structured interviews with PWID, community partners, and healthcare providers in the rural state of Maine (USA). We explored how changes made during the pandemic impacted access to harm reduction services, including basic services (i.e., shelter), syringe service programs, safe drug supply, low barrier treatment, and peer support. Interviews were analyzed using the framework method to apply Penchansky's model of access, with Saurman's modification, which includes six dimensions of access-accessibility, availability, acceptability, affordability, accommodation, awareness. RESULTS: We interviewed thirty-six stakeholders (N = 9 community partners, N = 9 healthcare providers, N = 18 PWID). Policies such as mobile outreach expansion, mail delivery of equipment, and relaxed telemedicine regulations facilitated accessibility to syringe service programs and low barrier buprenorphine treatment. Public health policies, such as social distancing and screening policies, reduced contact, which subsequently reduced acceptability and awareness of many services. Elimination of the one-for-one needle exchange in some areas increased, acceptability (i.e., perception of service), and affordability for PWID. However, some areas actually began enforcing a one-for-one needle exchange policy, which reduced affordability, acceptability, and awareness of services. CONCLUSIONS: Changes resulting from the COVID-19 pandemic have impacted all dimensions of access to harm reduction services among PWID. While some barriers to harm reduction services were unavoidable during the pandemic, we found that specific policy decisions mitigated service barriers, while other policies exacerbated them. Relaxing needle exchange policies were particularly helpful in facilitating access to harm reduction services by giving community organizations flexibility to adapt to the evolving needs of PWID. These results can inform policies and service delivery to optimally mitigate the negative impacts on PWID during, and beyond, the pandemic.


Subject(s)
COVID-19 , Drug Users , HIV Infections , Substance Abuse, Intravenous , HIV Infections/prevention & control , Harm Reduction , Health Services Accessibility , Humans , Needle-Exchange Programs , Pandemics , Pharmaceutical Preparations , Substance Abuse, Intravenous/complications , Substance Abuse, Intravenous/epidemiology
8.
J Card Fail ; 28(10): 1568-1571, 2022 10.
Article in English | MEDLINE | ID: mdl-35691479

ABSTRACT

BACKGROUND: Guidelines recommend goals of care conversations (GOCC) and specialty palliative care at the time of initiation of palliative inotropes for patients with advanced heart failure. The extent to which GOCC are occurring, the content of the GOCC, and the frequency of palliative care involvement is unknown. METHODS AND RESULTS: We conducted a retrospective chart review of all patients discharged from a tertiary medical center between October 2015 and April 2020 initiated on continuous palliative inotropes. We identified 53 patients who were discharged on continuous palliative inotropes. Most patients (46/53 [87%]) had a documented GOCC, including discussions around preferences for life-sustaining treatments, hospice, and/or prognosis. However, just more than one-half of the patients (55% [15/27]) with an ICD had a documented discussion regarding preferences for ICD deactivation. Patients seen by palliative care were more likely to have a documented discussion about ICD deactivation (68% vs 0%, P = .0098). The frequency of palliative care consultation and documented GOCC conversations increased over time. CONCLUSIONS: Although we observed overall high rates of documented GOCC, there is room for improving the rate of discussions with patients about whether they wish to have their ICD deactivated. Future research should test interventions to improve the frequency of ICD discussions.


Subject(s)
Heart Failure , Hospice Care , Heart Failure/drug therapy , Humans , Palliative Care , Patient Care Planning , Retrospective Studies
9.
J Palliat Med ; 25(8): 1258-1267, 2022 08.
Article in English | MEDLINE | ID: mdl-35417249

ABSTRACT

Background: It is unknown whether telemedicine-delivered palliative care (tele-PC) supports emotionally responsive patient-clinician interactions. Objectives: We conducted a mixed-methods formative study at two academic medical centers in rural U.S. states to explore the acceptability, feasibility, and emotional responsiveness of tele-PC. Design: We assessed clinicians' emotional responsiveness through questionnaires, qualitative interviews, and video coding. Results: We completed 11 tele-PC consultations. Mean age was 71 years, 30% did not complete high school, 55% experienced at least moderate financial insecurity, and 2/3 rated their overall health poorly. All patients rated tele-PC as equal to, or better than, in-person PC at providing emotional support. There was a tendency toward higher positive and lower negative emotions following the consultation. Video coding identified 114 instances of patients expressing emotions, and clinicians detected and responded to 98% of these events. Conclusion: Tele-PC appears to support emotionally responsive patient-clinician interactions. A mixed-methods approach to evaluating tele-PC yields useful, complementary insights.


Subject(s)
Hospice and Palliative Care Nursing , Telemedicine , Aged , Emotions , Humans , Palliative Care/methods , Referral and Consultation , Telemedicine/methods
10.
Environ Sci Technol ; 56(7): 4080-4090, 2022 04 05.
Article in English | MEDLINE | ID: mdl-35297611

ABSTRACT

A frequent goal of chemical forensic analyses is to select a panel of diagnostic chemical features─colloquially termed a chemical fingerprint─that can predict the presence of a source in a novel sample. However, most of the developed chemical fingerprinting workflows are qualitative in nature. Herein, we report on a quantitative machine learning workflow. Grab samples (n = 51) were collected from five chemical sources, including agricultural runoff, headwaters, livestock manure, (sub)urban runoff, and municipal wastewater. Support vector classification was used to select the top 10, 25, 50, and 100 chemical features that best discriminate each source from all others. The cross-validation balanced accuracy was 92-100% for all sources (n = 1,000 iterations). When screening for diagnostic features from each source in samples collected from four local creeks, presence probabilities were low for all sources, except for wastewater at two downstream locations in a single creek. Upon closer investigation, a wastewater treatment facility was located ∼3 km upstream of the nearest sample location. In addition, using simulated in silico mixtures, the workflow can distinguish presence and absence of some sources at 10,000-fold dilutions. These results strongly suggest that this workflow can select diagnostic subsets of chemical features that can be used to quantitatively predict the presence/absence of various sources at trace levels in the environment.


Subject(s)
Environmental Monitoring , Wastewater , Agriculture , Animals , Environmental Monitoring/methods , Livestock , Machine Learning
11.
Bus Econ ; 57(2): 64-77, 2022.
Article in English | MEDLINE | ID: mdl-35221344

ABSTRACT

The data demands during the pandemic heightened the need to blend information from numerous sources to get a more timely and granular picture of economic developments. Ongoing efforts include the Chicago Fed's weekly retail sales estimate, the Census Bureau's work on higher-frequency state-level retail sales data, the Federal Reserve Board's computations of business closures and weekly payrolls, and the academic Opportunity Insights team's estimates of spending, business revenues and employment by income and ZIP code.

12.
J Rural Health ; 38(2): 457-463, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34043838

ABSTRACT

PURPOSE: The impact of rurality and socioeconomic deprivation on end-of-life (EOL) care for patients with heart failure (HF) is unknown. We analyzed claims to describe the prevalence and predictors of EOL health care utilization for patients dying with HF in a predominantly rural state. METHODS: We used the MaineHealth Data Organization's All-Payer Claims Data to identify 15,168 patients ≥35 who died with HF between 2012 and 2017. The primary outcome was health care utilization during the last 180 days of life (EOL definition for this analysis), including emergency department (ED) visits, hospitalizations, intensive care unit (ICU) admissions, and hospice utilization. Patient characteristics analyzed included age, gender, comorbidities, area deprivation index (ADI), and rurality. FINDINGS: Among 15,168 patients ≥35 who died with HF, 48% had ≥2 hospitalizations, 72% had ≥2 ED visit, 29% had an ICU stay, 2% initiated dialysis during EOL, and 64% received hospice. Rural patients were more likely to have an ICU admission and have ≥2 hospitalizations. Patients residing in areas with higher ADI were more likely to be hospitalized, admitted to the ICU, and started on dialysis. Both rural patients and those living in higher ADI areas were less likely to receive hospice. After multivariable adjustment, rurality and ADI were independently associated with a decreased likelihood of receiving hospice (OR 0.62 [95% CI: 0.53-0.72] for the most rural patients and OR 0.64 [95% CI: 0.57-0.72] for the highest ADI). CONCLUSION: Both rurality and local area deprivation drive disparities in EOL care for patients dying with heart failure.


Subject(s)
Heart Failure , Terminal Care , Geography , Heart Failure/epidemiology , Heart Failure/therapy , Humans , Retrospective Studies , Socioeconomic Factors
13.
J Gen Intern Med ; 36(9): 2656-2662, 2021 09.
Article in English | MEDLINE | ID: mdl-33409886

ABSTRACT

BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) often receive burdensome care at end-of-life (EOL) and infrequently complete advance care planning (ACP). The surprise question (SQ) is a prognostic tool that may facilitate ACP. OBJECTIVE: To assess how well the SQ predicts mortality and prompts ACP for COPD patients. DESIGN: Retrospective cohort study. SUBJECTS: Patients admitted to the hospital for an acute exacerbation of COPD between July 2015 and September 2018. MAIN MEASURES: Emergency department (ED) and inpatient clinicians answered, "Would you be surprised if this patient died in the next 30 days (ED)/one year (inpatient)?" The primary outcome measure was the accuracy of the SQ in predicting 30-day and 1-year mortality. The secondary outcome was the correlation between SQ and ACP (palliative care consultation, documented goals-of-care conversation, change in code status, or completion of ACP document). KEY RESULTS: The 30-day SQ had a high specificity but low sensitivity for predicting 30-day mortality: sensitivity 12%, specificity 95%, PPV 11%, and NPV 96%. The 1-year SQ demonstrated better accuracy for predicting 1-year mortality: sensitivity 47%, specificity 75%, PPV 35%, and NPV 83%. After multivariable adjustment for age, sex, and prior 6-month admissions, 1-year SQ+ responses were associated with greater odds of 1-year mortality (OR 2.38, 95% CI 1.39-4.08) versus SQ-. One-year SQ+ patients were more likely to have a goals-of-care conversation (25% vs. 11%, p < 0.01) and complete an advance directive or POLST (46% vs. 23%, p < 0.01). After multivariable adjustment, SQ+ responses to the 1-year SQ were associated with greater odds of ACP receipt (OR 2.67, 95% CI 1.64-4.36). CONCLUSIONS: The 1-year surprise question may be an effective component of prognostication and advance care planning for COPD patients in the inpatient setting.


Subject(s)
Advance Care Planning , Pulmonary Disease, Chronic Obstructive , Hospitalization , Humans , Palliative Care , Prospective Studies , Pulmonary Disease, Chronic Obstructive/diagnosis , Pulmonary Disease, Chronic Obstructive/therapy , Retrospective Studies
14.
J Am Heart Assoc ; 9(18): e016505, 2020 09 15.
Article in English | MEDLINE | ID: mdl-32862771

ABSTRACT

Background Advanced heart failure (AHF) carries a morbidity and mortality that are similar or worse than many advanced cancers. Despite this, there are no accepted quality metrics for end-of-life (EOL) care for patients with AHF. Methods and Results As a first step toward identifying quality measures, we performed a qualitative study with 23 physicians who care for patients with AHF. Individual, in-depth, semistructured interviews explored physicians' perceptions of characteristics of high-quality EOL care and the barriers encountered. Interviews were analyzed using software-assisted line-by-line coding in order to identify emergent themes. Although some elements and barriers of high-quality EOL care for AHF were similar to those described for other diseases, we identified several unique features. We found a competing desire to avoid overly aggressive care at EOL alongside a need to ensure that life-prolonging interventions were exhausted. We also identified several barriers related to identifying EOL including greater prognostic uncertainty, inadequate recognition of AHF as a terminal disease and dependence of symptom control on disease-modifying therapies. Conclusions Our findings support quality metrics that prioritize receipt of goal-concordant care over utilization measures as well as a need for more inclusive payment models that appropriately reflect the dual nature of many AHF therapies.


Subject(s)
Heart Failure/therapy , Physicians/psychology , Quality of Health Care , Terminal Care/methods , Adult , Aged , Cardiologists/psychology , Female , Humans , Interviews as Topic , Male , Middle Aged , Physicians, Primary Care/psychology , Qualitative Research , Terminal Care/standards
15.
Front Psychol ; 11: 626038, 2020.
Article in English | MEDLINE | ID: mdl-33519656

ABSTRACT

BACKGROUND: Fear of cancer recurrence (FCR) is an important cause of suffering for cancer survivors, and both empirical evidence and theoretical models suggest that prognostic uncertainty plays a causal role in its development. However, the relationship between prognostic uncertainty and FCR is incompletely understood. OBJECTIVE: To explore the relationship between prognostic uncertainty and FCR among patients with ovarian cancer (OC). DESIGN: A qualitative study was conducted utilizing individual in-depth interviews with a convenience sample of patients with epithelial ovarian cancer who had completed first-line treatment with surgery and/or chemotherapy. Semi-structured interviews explored participants' (1) understanding of their prognosis; (2) experiences, preferences, and attitudes regarding prognostic information; and (3) strategies for coping with prognostic uncertainty. Inductive qualitative analysis and line-by-line software-assisted coding of interview transcripts was conducted to identify key themes and generate theoretical insights on the relationship between prognostic uncertainty and FCR. RESULTS: The study sample consisted of 21 participants, nearly all of whom reported experiencing significant FCR, which they traced to an awareness of the possibility of a bad outcome. Some participants valued and pursued prognostic information as a means of coping with this awareness, suggesting that prognostic uncertainty causes FCR. However, most participants acknowledged fundamental limits to both the certainty and value of prognostic information, and engaged in various strategies aimed not at reducing but constructing and maintaining prognostic uncertainty as a means of sustaining hope in the possibility of a good outcome. Participants' comments suggested that prognostic uncertainty, fear, and hope are connected by complex, bi-directional causal pathways mediated by processes that allow patients to cope with, construct, and maintain their uncertainty. A provisional dual-process theoretical model was developed to capture these pathways. CONCLUSION: Among patients with OC, prognostic uncertainty is both a cause and an effect of FCR-a fear-inducing stimulus and a hope-sustaining response constructed and maintained through various strategies. More work is needed to elucidate the relationships between prognostic uncertainty, fear, and hope, to validate and refine our theoretical model, and to develop interventions to help patients with OC and other serious illnesses to achieve an optimal balance between these states.

16.
JAMA ; 322(24): 2385-2386, 2019 Dec 24.
Article in English | MEDLINE | ID: mdl-31860050
17.
Patient Educ Couns ; 101(9): 1518-1537, 2018 09.
Article in English | MEDLINE | ID: mdl-29655876

ABSTRACT

BACKGROUND: Uncertainty tolerance (UT) is thought to be a characteristic of individuals that influences various outcomes related to health, healthcare, and healthcare education. We undertook a systematic literature review to evaluate the state of the evidence on UT and its relationship to these outcomes. METHODS: We conducted electronic and bibliographic searches to identify relevant studies examining associations between UT and health, healthcare, or healthcare education outcomes. We used standardized tools to assess methodological quality and analyzed the major findings of existing studies, which we organized and classified by theme. RESULTS: Searches yielded 542 potentially relevant articles, of which 67 met inclusion criteria. Existing studies were heterogeneous in focus, setting, and measurement approach, were largely cross-sectional in design, and overall methodological quality was low. UT was associated with various trainee-centered, provider-centered, and patient-centered outcomes which were cognitive, emotional, and behavioral in nature. UT was most consistently associated with emotional well-being. CONCLUSIONS: Uncertainty tolerance is associated with several important trainee-, provider-, and patient-centered outcomes in healthcare and healthcare education. However, low methodological quality, study design limitations, and heterogeneity in the measurement of UT limit strong inferences about its effects, and addressing these problems is a critical need for future research.


Subject(s)
Delivery of Health Care , Health Personnel/psychology , Outcome Assessment, Health Care , Uncertainty , Health , Health Workforce , Humans
18.
J Pain Symptom Manage ; 55(4): 1165-1172.e5, 2018 04.
Article in English | MEDLINE | ID: mdl-29247755

ABSTRACT

CONTEXT: Timely hospice referral is an indicator of high-quality end-of-life care for cancer patients. Variations in patient characteristics associated with hospice utilization and length of stay have been demonstrated in studies of other malignancies but not melanoma. OBJECTIVES: We sought to understand hospice utilization and patient characteristics associated with variability in use for the older melanoma population. METHODS: We used the Surveillance, Epidemiology, and End Results-Medicare database to identify 13,393 melanoma patients aged 65+ years at time of diagnosis between 2000 and 2009, who died by 12/31/10. The primary outcome was enrollment in hospice with secondary outcome of hospice duration. Patient characteristics associated with variations in hospice enrollment were examined. RESULTS: Among 13,393 patients who died with melanoma, 5298 (40%) received hospice care. Of these, 17% were enrolled in hospice for three days or less, while 13% had ≥90 days of hospice care. Despite improvements over time in the proportion of patients who received hospice and those who received at least 90 days of hospice care, late hospice enrollments did not change. Multivariable analysis revealed that patients of older age, with distant disease at time of diagnosis, and residing in rural areas or in census tracts with higher rates of high school completion were more likely to enroll in hospice. CONCLUSION: Rates of hospice enrollment increased over time but remained under accepted quality benchmarks with variations evident in those who receive hospice services. Efforts to increase access to earlier hospice care for all patients dying with melanoma are essential.


Subject(s)
Hospice Care , Length of Stay , Medicare , Melanoma/therapy , Patient Acceptance of Health Care , Age Factors , Aged , Aged, 80 and over , Educational Status , Female , Hospice Care/economics , Hospices , Humans , Male , Melanoma/economics , Melanoma/mortality , Rural Population , SEER Program , United States
19.
Insects ; 8(2)2017 May 18.
Article in English | MEDLINE | ID: mdl-28524117

ABSTRACT

Data collection, storage, analysis, visualization, and dissemination are changing rapidly due to advances in new technologies driven by computer science and universal access to the internet. These technologies and web connections place human observers front and center in citizen science-driven research and are critical in generating new discoveries and innovation in such fields as astronomy, biodiversity, and meteorology. Research projects utilizing a citizen science approach address scientific problems at regional, continental, and even global scales otherwise impossible for a single lab or even a small collection of academic researchers. Here we describe eButterfly an integrative checklist-based butterfly monitoring and database web-platform that leverages the skills and knowledge of recreational butterfly enthusiasts to create a globally accessible unified database of butterfly observations across North America. Citizen scientists, conservationists, policy makers, and scientists are using eButterfly data to better understand the biological patterns of butterfly species diversity and how environmental conditions shape these patterns in space and time. eButterfly in collaboration with thousands of butterfly enthusiasts has created a near real-time butterfly data resource producing tens of thousands of observations per year open to all to share and explore.

20.
Ecol Lett ; 19(9): 1159-71, 2016 09.
Article in English | MEDLINE | ID: mdl-27353433

ABSTRACT

Identifying drivers of infectious disease patterns and impacts at the broadest scales of organisation is one of the most crucial challenges for modern science, yet answers to many fundamental questions remain elusive. These include what factors commonly facilitate transmission of pathogens to novel host species, what drives variation in immune investment among host species, and more generally what drives global patterns of parasite diversity and distribution? Here we consider how the perspectives and tools of macroecology, a field that investigates patterns and processes at broad spatial, temporal and taxonomic scales, are expanding scientific understanding of global infectious disease ecology. In particular, emerging approaches are providing new insights about scaling properties across all living taxa, and new strategies for mapping pathogen biodiversity and infection risk. Ultimately, macroecology is establishing a framework to more accurately predict global patterns of infectious disease distribution and emergence.


Subject(s)
Communicable Diseases , Host-Pathogen Interactions , Biodiversity , Communicable Diseases/epidemiology , Communicable Diseases/etiology , Communicable Diseases/transmission , Communicable Diseases/veterinary , Ecology/methods
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