Approaches to decision-making among late-stage melanoma patients: a multifactorial investigation.

PurposeThe treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients' approaches to treatment decision-making in order to advance understanding of patient influences and supports.Methods(1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center.ResultsExploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. "Reliant outsiders" relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. "Active insiders" accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies.ConclusionWe identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making

Beyond Exploratory: A Tailored Framework for Assessing Rigor in Qualitative Health Services Research

Objective: To propose a framework for assessing the rigor of qualitative research that identifies and distinguishes between the diverse objectives of qualitative studies currently used in patient-centered outcomes and health services research (PCOR and HSR). Study Design: Narrative review of published literature discussing qualitative guidelines and standards in peer-reviewed journals and national funding organizations that support PCOR and HSR. Principal Findings: We identify and distinguish three objectives of current qualitative studies in PCOR and HSR: exploratory, descriptive, and comparative. For each objective, we propose methodological standards that can be used to assess and improve rigor across all study phases—from design to reporting. Similar to quantitative studies, we argue that standards for qualitative rigor differ, appropriately, for studies with different objectives and should be evaluated as such. Conclusions: Distinguishing between different objectives of qualitative HSR improves the ability to appreciate variation in qualitative studies as well as appropriately evaluate the rigor and success of studies in meeting their own objectives. Researchers, funders, and journal editors should consider how adopting the criteria for assessing qualitative rigor outlined here may advance the rigor and potential impact of qualitative research in patient-centered outcomes and health services research

Putting Culture Back in Context: A Context Dependent Model of How Cultural Inputs, Toolkits, and Meanings Influence Action

In this article I outline a new framework for the sociological study of culture that relates three fundamental facets of human culture (inputs, toolkits, and meanings) to each other and suggests the contingencies under which each can influence action. Sociological theories of culture typically pitch these facets as opposing perspectives of “what culture is.” I argue that while each perspective answers a necessary part of the theoretical puzzle linking culture and action, existing models are not sufficient as standalone answers. Even the more theoretically nuanced attempts at integrating multiple elements of culture tend to argue that one particular aspect of culture provides the most powerful link to action a priori. The empirical inadequacies of each perspective as a stand-alone theory of “how culture affects action” are accounted for by the failure of theorists from each perspective to fully recognize and integrate the other elements of culture, as well as the concrete contingencies that give them analytic power, into their models. I argue that inputs, toolkits, and meanings are fundamental, complementary, and necessarily intertwined elements of culture. Further, which of these elements has the strongest influence on action is a function of social context. I use examples from both my own research on health behaviors and the empirical works of other scholars to propose a context dependent model of how and under what conditions each element of culture can affect both action and outcomes. Specifically, I show how varying levels of social stability, inequality, codification, and institutional involvement affect the relative influence of each aspect of culture

Qualitative Coding in the Computational Era: A Hybrid Approach to Improve Reliability and Reduce Effort for Coding Ethnographic Interviews

Sociologists have argued that there is value in incorporating computational tools into qualitative research, including using machine learning to code qualitative data. Yet standard computational approaches do not neatly align with traditional qualitative practices. The authors introduce a hybrid human-machine learning approach (HHMLA) that combines a contemporary iterative approach to qualitative coding with advanced word embedding models that allow contextual interpretation beyond what can be reliably accomplished with conventional computational approaches. The results, drawn from an analysis of 87 human-coded ethnographic interview transcripts, demonstrate that HHMLA can code data sets at a fraction of the effort of human-only strategies, saving hundreds of hours labor in even modestly sized qualitative studies, while improving coding reliability. The authors conclude that HHMLA may provide a promising model for coding data sets where human-only coding would be logistically prohibitive but conventional computational approaches would be inadequate given qualitative foci.University of Arizona (Research, Discover, and Innovation Faculty Seed Grant) National Institute of Health (DP1AG069809, R01CA152195)Open access journalThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

Does Housing Status Matter in Emergency Medical Services Administration of Naloxone? A Prehospital Cross-sectional Study

Introduction: Persons experiencing homelessness (PEH) use emergency medical services (EMS) at disproportionately high rates relative to housed individuals due to several factors including disparate access to healthcare. Limited access to care is compounded by higher rates of substance use in PEH. Despite growing attention to the opioid epidemic and housing crisis, differences in EMS naloxone administration by housing status has not been systematically examined. Our objective in this study was to describe EMS administration of naloxone by housing status in the City of Los Angeles.Methods: This was a 12-month retrospective, cross-sectional analysis of electronic patient care reports (ePCRs) for all 9–1–1 EMS incidents attended by the Los Angeles Fire Department (LAFD), the sole EMS agency for the City of Los Angeles during the study period, January-December 2018. During this time, the City had a population of 3,949,776 with an estimated 31,825 (0.8%) PEH. We included in the study individuals to whom LAFD responders had administered naloxone. Housing status is a mandatory field on ePCRs. The primary study outcome was the incidence of EMS naloxone administration by housing status. We used descriptive statistics and logistic regression models to examine patterns by key covariates.Results: There were 345,190 EMS incidents during the study period. Naloxone was administered during 2,428 incidents. Of those incidents 608 (25%) involved PEH, and 1,820 (75%) involved housed individuals. Naloxone administration occurred at a rate of 19 per 1,000 PEH, roughly 44 times the rate of housed individuals. A logistic regression model showed that PEH remained 2.38 times more likely to receive naloxone than their housed counterparts, after adjusting for gender, age, and respiratory depression (odds ratio 2.38, 95% confidence interval 2.15–2.64). The most common impressions recorded by the EMS responders who administered naloxone were the same for both groups: overdose; altered level of consciousness; and cardiac arrest. Persons experiencing homelessness who received naloxone were more likely to be male (82% vs 67%) and younger (41.4 vs 46.2 years) than housed individuals.Conclusion: In the City of Los Angeles, PEH are more likely to receive EMS-administered naloxone than their housed peers even after adjusting for other factors. Future research is needed to understand outcomes and improve care pathways for patients confronting homelessness and opioid use

Perceived discrimination in U.S. healthcare: Charting the effects of key social characteristics within and across racial groups

This article employs an original empirical analysis to contribute to scientific understandings of the relationship between social characteristics and perceptions of discrimination in healthcare encounters within and across racial categories in the U.S. Our analysis focuses on a diverse sample of 43,020 adults aged 18 to 85 drawn from the California Health Interview Survey (CHIS). We use a series of weighted descriptive statistics and logistic regression models to parse out factors associated with perceived discrimination and chart how they vary by race and ethnicity. Members of racial minorities were more likely to report perceptions of discrimination, and while the effect was somewhat mitigated by introducing patient and health-care system factors into our models, the race effects remained both statistically significant and of substantial magnitude (particularly for African Americans and Native Americans). Poor self-reported health and communication difficulties in the clinical encounter were associated with increased perceptions of discrimination across all groups. Further, among non-whites, increased education was associated with increased perceptions of discrimination net of other factors. These findings suggest efforts to reduce disparities in medical care should continue to focus on expanding the depth and quality of patient–provider interactions for disadvantaged racial groups, while also being attentive to other factors that affect perceived racial discrimination in healthcare encounters within and across racial groups

Approaches to decision-making among late-stage melanoma patients: a multifactorial investigation.

PurposeThe treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients' approaches to treatment decision-making in order to advance understanding of patient influences and supports.Methods(1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center.ResultsExploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. "Reliant outsiders" relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. "Active insiders" accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies.ConclusionWe identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making

Beyond exploratory: a tailored framework for designing and assessing qualitative health research

The objective of this commentary is to develop a framework for assessing the rigour of qualitative approaches that identifies and distinguishes between the diverse objectives of qualitative health research, guided by a narrative review of the published literature on qualitative guidelines and standards from peer-reviewed journals and national funding organisations that support health services research, patient-centered outcomes research and other applied health research fields. In this framework, we identify and distinguish three objectives of qualitative studies in applied health research: exploratory, descriptive and comparative. For each objective, we propose methodological standards that may be used to assess and improve rigour across all study phases—from design to reporting. Similar to hierarchies of quality of evidence within quantitative studies, we argue that standards for qualitative rigour differ, appropriately, for studies with different objectives and should be evaluated as such. Distinguishing between different objectives of qualitative health research improves the ability to appreciate variation in qualitative studies and to develop appropriate evaluations of the rigour and success of qualitative studies in meeting their stated objectives. Researchers, funders and journal editors should consider how further developing and adopting the framework for assessing qualitative rigour outlined here may advance the rigour and potential impact of this important mode of inquiry.Patient-Centered Outcomes Research Institute (PCORI) AwardPatient-Centered Outcomes Research Institute - PCORI [ME-1409-22996]Open access journalThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]