Eliciting Low-Risk Thyroid Cancer Treatment Preferences Using Clinical Vignettes: A Pilot Study.

OBJECTIVE: While surgical resection has been the traditional standard treatment for small (≤1 cm), differentiated thyroid cancers, active surveillance (AS) and radiofrequency ablation (RFA) are increasingly considered. The aim of this study was to explore patient preferences in thyroid cancer treatment using a series of clinical vignettes. METHODS: Thyroid cancer survivors and general population volunteers were recruited to rank experience-driven clinical vignettes in order of preference. Rankings were compared using Wilcoxon signed rank. Formative qualitative methods were used to develop and refine clinical vignettes that captured 4 treatments-thyroid lobectomy (TL), total thyroidectomy (TT), AS, and RFA-along with 6 treatment complications. Content was validated via interviews with 5 academic subspecialists. RESULTS: Nineteen volunteers participated (10 survivors, 9 general population). Treatment complications were ranked lower than uncomplicated counterparts in 99.0% of cases, indicating excellent comprehension. Counter to our hypothesis, among uncomplicated vignettes, median rankings were 1 for AS, 2 for RFA, 3.5 for TL, and 5 for TT. Trends were consistent between thyroid cancer survivors and the general population. AS was significantly preferred over RFA (P = .02) and TT (P < .01). Among surgical options, TL was significantly preferred over TT (P < .01). CONCLUSION: When treatments for low-risk thyroid cancer are described clearly and accurately through clinical vignettes, patients may be more likely to choose less invasive treatment options over traditional surgical resection.

Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research.

OVERVIEW: This paper describes stakeholder involvement and formative qualitative research in the creation of health state descriptions (HSDs) or vignettes for low-risk thyroid cancer. The aim of this project was to engage stakeholders in the contribution of a novel set of HSDs, an important first step in the process of assessing value in thyroid cancer health states. METHODS: We draw upon formative, descriptive qualitative methods, following a multi-stage framework of data collection. We conducted individual semi-structured interviews, cognitive interviews, and focus groups with thyroid cancer patients, community providers, academic subspecialists, and participants with no thyroid cancer diagnosis (N = 31). The HSDs went through several iterations over the course of a year, in collaboration with a highly engaged community advisory board, laying the groundwork for HSDs that are comprehensible, comparable, and appropriate for stated-preference research. FINDINGS: Thyroid cancer survivors compared their experiences with those described in the HSDs. Feedback included concern for the emotional well-being of study participants who would be reading them. Providers were attuned to the need for clinical accuracy and made suggestions to reflect their clinical experience, including for patients with complications or disease progression. The pilot participants with no thyroid cancer were particularly valuable in promoting the need to simplify language and maximize readability. DISCUSSION: Stakeholder engagement was critical to being responsive to feedback as the iterations were refined and presented. Continuous engagement and consultation with multiple sources strengthened the HSDs. A secondary outcome from this project is that stakeholders expressed interest in adapting the HSDs into decision aids for people newly diagnosed with low-risk thyroid cancer.

A Qualitative, Multiperspective Inquiry of Multiple Sclerosis Telemedicine in the United States.

BACKGROUND: Telemedicine has expanded access to high-quality, appropriate, and affordable health care for people with multiple sclerosis (MS). This study explored how the expansion of MS telemedicine is perceived and experienced by people with MS, health care providers (HCPs), and payers and policy experts (PYs). METHODS: Forty-five semistructured interviews with 20 individuals with MS, 15 HCPs, and 10 PYs were conducted between September 2020 and January 2021. The interviews were recorded on a televideo platform, transcribed, and analyzed for themes using qualitative data software. RESULTS: Interviews revealed the following 4 themes. Technology: Telemedicine increases access and convenience. Technical challenges were the most cited downside to telemedicine. Clinical encounters: Confidence in MS care via telemedicine varies. Virtual "house calls" have clinical benefits. Financing and infrastructure: Reimbursement parity is critical to utilization and expansion of telemedicine. Stakeholders are hopeful and fearful as infrastructure and business models begin to shift. Shifting expectations: The familiar structure of the office visit is currently absent in telemedicine. Telemedicine visits need more intentionality from both providers and patients. CONCLUSIONS: Telemedicine is an efficient, convenient way to deliver and receive many aspects of MS care. To expand telemedicine care, many HCPs need more training and experience, people with MS need guidance to optimize their care, and PYs in the United States need to pass legislation and adjust business models to incorporate benefits and reimbursement for telemedicine health in insurance plans. The future is promising for the ongoing use of telemedicine to improve MS care, and stakeholders should work to preserve and expand the policy changes made during the COVID-19 pandemic.

The Graying of the Cool Pose: Examining Active Care Strategies Among Older African-American Men With Type 2 Diabetes Mellitus.

OBJECTIVES: The influence of masculinity norms on disparate health outcomes has been established in the literature. What is less understood are the specific ways in which African-American men "do health" by engaging in strategies promoting positive health outcomes. This article reframes what has been previously examined through a health deficit perspective by reporting the experiences and positive health maintenance strategies of older, African-American men with type 2 diabetes mellitus (diabetes). METHODS: We employed an intersectional framework to thematically analyze qualitative interviews with African-American male participants (N = 15) in our National Institute on Aging-funded study of diabetes among older adults in Baltimore. Interviews consisted of a modified version of the McGill Illness Narrative Interview, which included discussions of diabetes experiences and self-management strategies. RESULTS: The majority of African-American men in our study link their successful diabetes management to purposeful self-care activities, despite structural and personal limitations. These activities include proactively seeking diabetes education, healthy eating, medication management, and engaging in supportive relationships. DISCUSSION: Active pursuit of a healthy lifestyle often requires redefining Black manhood, defying negative gender stereotypes of what it means to be a Black male. Results are described in the context of the "Cool Pose," a framework for understanding how African-American men and boys cope with systemic racial oppression and the unachievable dominant standards of masculinity in the United States. The results suggest that this framework may be less applicable for older African-American men who promote well-being in the wake of chronic disease as they age.

"How I Can Help Me": Self-Care Priorities and Structural Pressures Among Black Older Adults With Diabetes.

BACKGROUND AND OBJECTIVES: Disparities in type 2 diabetes mellitus (diabetes) represent an ongoing public health challenge. Black older adults are at high risk of diabetes and diabetes' complications. Diet, physical activity, and medication can control these risks, yet disease rates remain elevated. Utilizing an intersectionality framework, we seek to extend understanding of the social dimensions of diabetes through an examination of the diabetes self-care process from the perspective of Black older adults. RESEARCH DESIGN AND METHODS: This project involved a thematic analysis of diabetes illness narrative interviews with Black participants (N = 41) in our National Institute on Aging-funded study of diabetes. In a narrative approach, the participant communicates the significance of actions and events. RESULTS: The findings suggest that diabetes self-care involves interconnected struggles across four domains of care: (1) multimorbidity management, (2) financial well-being, (3) family support, and (4) formal health care. DISCUSSION AND IMPLICATIONS: Black older adult self-care reflects an active process of pursuing meaningful social goals and critical health needs. An intersectional framework, however, reveals the ongoing histories of inequity that shape this process. Further intervention to address the racist policies and practices found in Black older adults' communities and clinical care is needed to make true progress on diabetes disparities.

Affective Practices of Diabetes Self-Management Among Older Adults: Cumulative Effects of Childhood Adversity.

BACKGROUND AND OBJECTIVES: A strong correlation exists between Type 2 diabetes mellitus and adverse childhood experiences. How adverse childhood experiences inform later-life diabetes management is less understood. This article examines diabetes management from the perspective of affective practice to explore the lingering impact of trauma biographies in diabetes management. RESEARCH DESIGN AND METHODS: This secondary narrative analysis of 15 in-depth interviews with community-dwelling older adults with diabetes (subsample of the Subjective Experiences of Diabetes Study) focuses on the ways their reported childhood adversity affects perceptions of and responses to diabetes self-management. RESULTS: The experiences of adversity in childhood accumulate, throughout the life course, in the affective practices informing diabetes self-management, from blood glucose testing, to food consumption, to the emotions invested in body size. We identify 3 thematic areas that emerged across participants: (a) undermining self-worth, (b) (over)eating and food as comfort, and (c) weight and body size. DISCUSSION AND IMPLICATIONS: Our findings highlight affective practices as a mechanism through which adverse events accumulate and shape well-being over the life course. This analysis also suggests the potential for (de)accumulation of affective practices to improve diabetes management. The findings support recent calls for trauma-informed clinical care.

The Telemedicine for Patients With Inflammatory Bowel Disease (TELE-IBD) Clinical Trial: Qualitative Assessment of Participants' Perceptions.

BACKGROUND: Inflammatory bowel disease (IBD), comprising Crohn disease and ulcerative colitis, affects 1 to 3 million people in the United States. Telemedicine has shown promise in IBD. The objective of this study, telemedicine for patients with IBD (TELE-IBD), was to compare disease activity and quality of life (QoL) in a 1-year randomized clinical trial of IBD patients receiving telemedicine versus standard care. Treatment groups experienced improvements in disease activity and QoL, but there were no significant differences between groups. Study adherence to the text-based intervention was less than 80%, the targeted goal. OBJECTIVE: To understand adherence to remote monitoring, the goal of this qualitative assessment was to obtain TELE-IBD trial participants' perceptions, including their recommendations for future monitoring. METHODS: In this study, patients attending 3 tertiary referral centers with worsening IBD symptoms in the previous 2 years were eligible for randomization to remote monitoring via SMS text messages (short message service, SMS) every other week, weekly, or standard care. Participants (n=348) were evenly enrolled in the treatment groups, and 259 (74.4%) completed the study. For this study, a purposive sample of adherent (N=15) and nonadherent (N=14) patients was drawn from the TELE-IBD trial population. Adherence was defined as the completion of 80% (278/348) or more of the weekly or every other week self-assessments. Semistructured interviews conducted by phone surveyed (1) the strengths and benefits of TELE-IBD, (2) challenges associated with using TELE-IBD, and (3) how to improve the TELE-IBD intervention. Interviews were recorded, professionally transcribed, and coded based on a priori concepts and emergent themes with the aid of ATLAS.ti, version.7 qualitative data analysis software. RESULTS: Participants' discussions centered on 3 elements of the intervention: (1) self-assessment questions, (2) action plans, and (3) educational messages. Participants also commented on text-based platform, depression and adherence, TELE-IBD system in place of office visit, and their recommendations for future TELE-IBD systems. Adherent and nonadherent participants prefer a flexible system that is personalized, including targeted education messages, and they perceive the intervention as effective in facilitating IBD self-management. CONCLUSIONS: Participants identified clear benefits to the TELE-IBD system, including obtaining a better understanding of the disease process, monitoring their symptoms, and feeling connected to their health care provider. Participants' perceptions obtained in this qualitative study will assist in improving the TELE-IBD system to be more responsive to patients with IBD.

Understanding the Subjective Experience of Medication Adherence for Older Urban African Americans With Type 2 Diabetes and a History of Illicit Drug Addiction.

OBJECTIVE: African Americans experience high rates of type 2 diabetes mellitus (T2D). Self-management strategies, such as medication adherence, are key to mitigating negative T2D outcomes. This article addresses a gap in the literature by examining the intersections of drug abuse histories and medication adherence among urban, older African Americans with T2D. METHOD: In-depth interview data were collected as part of a larger ethnographic study examining the subjective experience of T2D among urban older adults. Two representative focal cases were selected and thematic analysis performed to illustrate how former illicit drug addicts perceive prescription medication usage. RESULTS: Narratives reveal that participants are displeased about having to take prescription drugs and are making lifestyle changes to reduce medication usage and maintain sobriety. DISCUSSION: Previous drug abuse not only complicates medication adherence but is also a significant part of how older African Americans who are former drug users frame their understanding of T2D more broadly.

Diabetes and the Motivated Patient: Understanding Perlocutionary Effect in Health Communication.

Health care providers (HCP) understand the importance of keeping patients motivated but may be unaware how their words may have unintended negative effects upon their patient's lives. People with diabetes report being told by their HCP that they are "cured" or that they are praised for strides made in weight loss and/or lowered blood glucose, and interpret these messages in unexpected ways. For this paper, we focus upon one case to illustrate the depth and nuance of the patient-provider communication as it emerged within a larger interview-based ethnographic study. Audio-recorded interviews and transcriptions were analyzed discursively. Discourse analysis reveals the ways ideology affects how the patient responds to HCP's utterances and how this affects diabetes self-care. Findings indicate significant perlocutionary effects upon health outcomes, varying both positively and/or negatively. This study points to the importance of carefully considering the power of words and whenever possible knowing the patient's ideological orientation to their world. HCPs should be explicit and deliberate with their communication. Sensitization to the various ways patients hear and react to messages in a clinical setting may lead to improved health outcomes, especially for those with chronic health conditions such as diabetes mellitus.

Successful Aging Among African American Older Adults With Type 2 Diabetes.

OBJECTIVES: Rowe and Kahn's concept of successful aging remains an important model of well-being; additional research is needed, however, to identify how economically and socially disadvantaged older adults experience well-being, including the role of life events. The findings presented here help address this gap by examining the subjective construction of well-being among urban African American adults (age ≥ 50) with Type 2 diabetes. METHOD: As part of the National Institute on Aging-funded Subjective Experience of Diabetes among Urban Older Adults study, ethnographers interviewed African American older adults with diabetes (n = 41) using an adaptation of the McGill Illness Narrative Interview. Data were coded using an inductively derived codebook. Codes related to aging, disease prognosis, and "worldview" were thematically analyzed to identify constructions of well-being. RESULTS: Participants evaluate their well-being through comparisons to the past and to the illnesses of friends and family. Diabetes self-care motivates social engagement and care of others. At times, distrust of medical institutions means well-being also is established through nonadherence to suggested biomedical treatment. DISCUSSION: Hardship and illness in participants' lives frame their diabetes experience and notions of well-being. Providers need to be aware of the social, economic, and political lenses shaping diabetes self-management and subjective well-being.

Stigma and Discontinuity in Multilevel Senior Housing's Continuum of Care.

PURPOSE OF THE STUDY: This article presents data from 2 qualitative studies, confirming what gerontologists observed 30 years ago. Multilevel senior housing residents experience stigma and distress in an environment where people are grouped by levels of functioning. DESIGN AND METHODS: Qualitative, interview-based (N = 367) studies were conducted in senior housing settings offering multiple levels of care (N = 7). Analyses involved revisiting coded narrative data, ethnographers' field-based knowledge, and identification of pattern saturation. RESULTS: Residents and places reflecting the highest levels of care are stigmatized in a context where people are monitored for health changes and required to relocate. Consequently, residents self-isolate, develop a diminished sense of self, and hide health and cognitive conditions out of fear of relocation. IMPLICATIONS: Developers, operators, staff, and potential residents need to recognize the personal and social challenges typically experienced even in within-site relocation. It is important to rethink the predominant model of senior housing that requires residents with changing needs to move and adapt to the setting.

Promoting and Protecting Against Stigma in Assisted Living and Nursing Homes.

PURPOSE OF THE STUDY: To determine the extent to which structures and processes of care in multilevel settings (independent living, assisted living, and nursing homes) result in stigma in assisted living and nursing homes. DESIGN AND METHODS: Ethnographic in-depth interviews were conducted in 5 multilevel settings with 256 residents, families, and staff members. Qualitative analyses identified the themes that resulted when examining text describing either structures of care or processes of care in relation to 7 codes associated with stigma. RESULTS: Four themes related to structures of care and stigma were identified, including the physical environment, case mix, staff training, and multilevel settings; five themes related to processes of care and stigma, including dining, independence, respect, privacy, and care provision. For each theme, examples were identified illustrating how structures and processes of care can potentially promote or protect against stigma. IMPLICATIONS: In no instance were examples or themes identified that suggested the staff intentionally promoted stigma; on the other hand, there was indication that some structures and processes were intentionally in place to protect against stigma. Perhaps the most important theme is the stigma related to multilevel settings, as it has the potential to reduce individuals' likelihood to seek and accept necessary care. Results suggest specific recommendations to modify care and reduce stigma.

The facade of stability in assisted living.

OBJECTIVES: The study sought to identify the varied types of change arising from internal and external influences in assisted living (AL) settings, expanding upon the literature's limited focus on resident decline and staff turnover and clarifying the importance of changes to life and work there. METHOD: This analysis employed qualitative interviews and observations from 4 studies involving 17 ALs to identify elements of change largely absent from the literature. Case material identified by the research team members relating to persons, groups, and settings exemplifying typical changes, as well as variations across settings, are presented. RESULTS: Multiple domains of AL change were identified, to include those in: (a) the external economic or competitive environments; (b) ownership, management, or key personnel; and (c) physical health or cognition of the aggregate resident population. In many cases, the changes influenced residents' satisfaction and perceived fit with the AL environment. DISCUSSION: Change of many types is a regular feature of AL; many changes alter routines or daily life; raise concerns of staff, residents, or families; or modify perceptions of residential normalcy. Environmental gerontology should more often extend the environment to include the social and interpersonal characteristics of collective living sites for elders.

Analysis of iterative region-of-interest image reconstruction for x-ray computed tomography.

One of the challenges for iterative image reconstruction (IIR) is that such algorithms solve an imaging model implicitly, requiring a complete representation of the scanned subject within the viewing domain of the scanner. This requirement can place a prohibitively high computational burden for IIR applied to x-ray computed tomography (CT), especially when high-resolution tomographic volumes are required. In this work, we aim to develop an IIR algorithm for direct region-of-interest (ROI) image reconstruction. The proposed class of IIR algorithms is based on an optimization problem that incorporates a data fidelity term, which compares a derivative of the estimated data with the available projection data. In order to characterize this optimization problem, we apply it to computer-simulated two-dimensional fan-beam CT data, using both ideal noiseless data and realistic data containing a level of noise comparable to that of the breast CT application. The proposed method is demonstrated for both complete field-of-view and ROI imaging. To demonstrate the potential utility of the proposed ROI imaging method, it is applied to actual CT scanner data.

Baby Boomers in an active adult retirement community: comity interrupted.

PURPOSE OF THE STUDY: This article explores a clash between incoming Baby Boomers and older residents in an active adult retirement community (AARC). We examine issues of social identity and attitudes as these groups encounter each other. DESIGN AND METHODS: Data are drawn from a multiyear ethnographic study of social relations in senior housing. Research at this site included in-depth, open-ended interviews (47), field notes (25), and participant observation in the field (500 hr). Research team biweekly discussions and Atlas.ti software program facilitated analysis. FINDINGS: We begin with a poignant incident that has continued to engender feelings of rejection by elders with each retelling and suggests the power and prevalence of ageism in this AARC. We identify three pervasive themes: (a) social identity and image matter, (b) significant cultural and attitudinal differences exist between Boomers and older residents, and (c) shared age matters less than shared interests. IMPLICATIONS: Our data clearly show the operation of ageism in this community and an equating of being old with being sick. The conflict between these two age cohorts suggests that cohort consciousness among Boomers carries elements of age denial, shared by the older old. It also challenges the Third Age concept as a generational phenomenon.

The Vernacular Landscape of Assisted Living.

This article is an exploration into the vernacular landscape of Assisted Living (AL), a conceptual idea borrowed from cultural geographer J.B. Jackson, which distinguishes formalized, planned space from those spaces which are unintended and often created spontaneously--vernacular. Based upon three large-scale, multi-year ethnographic studies in Maryland, we consider some of the ways people who live in AL relate to and respond to the built environment, at times subverting the intended purpose of design to make it their own. The conflict that often ensues over both planned and vernacular public and private space, we propose is ultimately the product of living within an environment that is both someone's home as well as a place of business, whose job it is to keep people safe. Within this physical context of vernacular private and public spaces, this article enriches understandings about the way autonomy and privacy expresses itself.