Search

Background: A growing number of older adults (ages 65+) live with Type 1 diabetes. Simultaneously, technologies such as continuous glucose monitoring (CGM) have become standard of care. There is thus a need to understand better the complex dynamics that promote use of CGM (and other care innovations) over time in this age group. Our aim was to adapt methods from systems thinking, specifically a participatory approach to system dynamics modeling called group model building (GMB), to model the complex experiences that may underlie different trajectories of CGM use among this population. Herein, we report on the feasibility, strengths, and limitations of this methodology. Methods: We conducted a series of GMB workshops and validation interviews to collect data in the form of questionnaires, diagrams, and recordings of group discussion. Data were integrated into a conceptual diagram of the "system" of factors associated with uptake and use of CGM over time. We evaluate the feasibility of each aspect of the study, including the teaching of systems thinking to older adult participants. We collected participant feedback on positive aspects of their experiences and areas for improvement. Results: We completed nine GMB workshops with older adults and their caregivers (N = 33). Each three-hour in-person workshop comprised: (1) questionnaires; (2) the GMB session, including both didactic components and structured activities; and (3) a brief focus group discussion. Within the GMB session, individual drawing activities proved to be the most challenging for participants, while group activities and discussion of relevant dynamics over time for illustrative (i.e., realistic but not real) patients yielded rich engagement and sufficient information for system diagramming. Study participants liked the opportunity to share experiences with peers, learning and enhancing their knowledge, peer support, age-specific discussions, the workshop pace and structure, and the systems thinking framework. Participants gave mixed feedback on the workshop duration. Conclusions: The study demonstrates preliminary feasibility, acceptability, and the value of GMB for engaging older adults about key determinants of complex health behaviors over time. To our knowledge, few studies have extended participatory systems science methods to older adult stakeholders. Future studies may utilize this methodology to inform novel approaches for supporting health across the lifespan. [ABSTRACT FROM AUTHOR]

Geographic racism gives rise to health inequities that impact communities in detrimental ways. Southern ethnic minority groups, particularly African American/Black semi‐rural communities, are subject to especially unjust outcomes in health, education, and wealth. Asset‐based community development (ABCD) is a way of engaging with communities in participatory and positive ways that center community voices as expert. Youth can participate in ABCD, are sensitive to the ways in which their communities are structured, and have insights as to how to improve the places they live. We undertook a qualitative interview study which included a cognitive mapping exercise with 28 youth to understand how African American/Black youth who had participated in an ABCD‐informed summer program conceptualized community and preferences about where they lived. Using a phenomenological approach to qualitative analysis, our study revealed that many youth defined community as a combination of people and place, enjoyed engaging with unique resources in their communities as well as seeking peace and quiet, experienced hardships as "something everybody knows" when observing constraints on their communities, and were committed to their communities and interested in seeing—and participating in—their flourishing. Our study provides a nuanced and contemporary understanding of the ways in which African American/Black semi‐rural youth experience community which can contribute to cyclical asset‐based development strategy aimed at empowering young people and improving health outcomes in resilient communities. [ABSTRACT FROM AUTHOR]

Objective (Study Question): To use systems thinking with diverse system actors to (a) characterize current problems at the intersection of chronic conditions (CCs) and reproductive health (RH) care and their determinants, (b) determine necessary system actors for change, and (c) document cross‐system actions that can improve identified problems in the United States. Data Sources/Study Setting: Data were collected from six groups of system actors via online focus groups. Study Design: This is a qualitative multilevel study using the iceberg systems thinking framework. Data Collection/Extraction Methods: Data were collected by note‐taking and recording six focus groups; analysis incorporated perspective triangulation using the systems thinking iceberg and system mapping to visualize interconnected system challenges, actors, and action ideas. Principal Findings: Participants described eight necessary system actors: health care institutions, medical leaders, medical providers, patient advocates and foundations, patients and families, payors, policy makers, and research funders. Forty pain points were identified, spread across each of the four levels of the systems thinking iceberg: undesirable outcomes (6), concerning trends (9), system structure flaws (15), and problematic mental models (10). In response to these pain points, a set of 46 action ideas was generated by participants and mapped into nine action themes: (1) adjust QI metrics, incentives, and reimbursement, (2) bolster RH medical education and training, (3) break down medical silos, (4) enrich patient education, (5) expand the health care team, (6) improve holistic health care, (7) modify research and programmatic funding to prioritize RH and CC, (8) spur innovation for patient visits, and (9) support professional champions and leaders. Conclusions: By embracing system complexity, creating visual maps, and pushing participants to identify actionable strategies for improvement, this study generates a set of specific actions that can be used to address pain points across the multiple system levels that make improving reproductive care for people with CCs so challenging. [ABSTRACT FROM AUTHOR]

[Display omitted] • Continuous glucose monitoring (CGM) may offer benefits for older adults with diabetes, but it is underused in this population. • We aimed to develop a conceptual model to describe the process by which older adults integrate CGM into their diabetes management, including the key phases and drivers of effective and sustained use. • We conducted an interview study with older adults with type 1 and type 2 diabetes to extend a preliminary model developed using data from older adults with type 1 diabetes, generating a comprehensive, patient-centered model. • This model, which includes six phases of CGM integration and associated support strategies, can be used to aid older adults learning to use CGM. Continuous glucose monitoring (CGM) use remains low in older adults. We aimed to develop a conceptual model of CGM integration among older adults with type 1 and type 2 diabetes. We previously engaged older adults with type 1 diabetes using participatory system science methods to develop a model of the system of factors that shape CGM integration. To validate and expand the model, we conducted semi-structured interviews with 17 older adults with type 1 and type 2 diabetes and 3 caregivers. Vignettes representing each integration phase were used to elicit outcomes and strategies to support CGM use. Data were analyzed using team-based causal loop diagraming. The model includes six phases spanning (1) CGM uptake; (2) device set-up; acquisition of (3) belief in oneself to use CGM effectively; (4) belief that CGM is preferable to blood glucose monitoring; (5) belief in future CGM benefits CGM; and (6) development of a sense of reliance on CGM. Causal loop diagrams visualize factors and feedback loops shaping outcomes at each phase. Participants proposed support strategies spanning clinical, educational, and behavioral interventions. The model underscores the complex transition of learning new technology and provides opportunities for tailored support for older adults. [ABSTRACT FROM AUTHOR]

The U.S. Food and Drug Administration (FDA) allows patients with serious illnesses to access investigational drugs for "compassionate use" outside of clinical trials through expanded access (EA) Programs. The federal Right-to-Try Act created an additional pathway for non-trial access to experimental drugs without institutional review board or FDA approval. This removal of oversight amplifies the responsibility of physicians, but little is known about the role of practicing physicians in non-trial access to investigational drugs. We undertook semi-structured interviews to capture the experiences and opinions of 21 oncologists all with previous EA experience at a major cancer center. We found five main themes. Participants with greater EA experience reported less difficulty accessing drugs through the myriad of administrative processes and drug company reluctance to provide investigational products while newcomers reported administrative hurdles. Oncologists outlined several rationales patients offered when seeking investigational drugs, including those with stronger health literacy and a good scientific rationale versus others who remained skeptical of conventional medicine. Participants reported that most patients had realistic expectations while some had unrealistic optimism. Given the diverse reasons patients sought investigational drugs, four factors—scientific rationale, risk-benefit ratio, functional status of the patient, and patient motivation—influenced oncologists' decisions to request compassionate use drugs. Physicians struggled with a "right-to-try" framing of patient access to experimental drugs, noting instead their own responsibility to protect patients' best interest in the uncertain and risky process of off-protocol access. This study highlights the willingness of oncologists at a major cancer center to pursue non-trial access to experimental treatments for patients while also shedding light on the factors they use when considering such treatment. Our data reveal discrepancies between physicians' sense of patients' expectations and their own internal sense of professional obligation to shepherd a safe process for patients at a vulnerable point in their care. [ABSTRACT FROM AUTHOR]

Background: The federal Right-to-Try (RTT) Act created an alternate regulatory pathway for preapproval access to investigational drugs. A few studies have examined the experiences of physicians with the Food and Drug Administration's Expanded Access Programs, but to our knowledge, no study has yet to examine their attitudes and experiences toward RTT.Methods: This study explored the views of 21 oncologists at a major cancer center with 3 main sites across the United States using semi-structured interviews and qualitative analysis. Participants were selected to have experience with Expanded Access Programs.Results: Most oncologists had limited familiarity with RTT, and several reported confusion about the legislation, including whether patients have a right to investigational drugs and an obligation for companies to provide them. Although oncologists were interested in decreased regulatory burdens, 3 areas of concern were articulated: lack of safety and oversight, unclear structure and no provision for data collection, and potential heightening of patient expectations. Only 4 oncologists had experience discussing RTT, and none formally attempted to obtain the drug through this mechanism. Participants questioned the practicality of RTT legislation and suggested alternative ways to improve access.Conclusions: The study provides foundational empirical data underlying challenging ambiguities by experienced oncologists familiar with off-trial use of investigational therapeutics and reaffirms the role of physicians and regulatory bodies in mitigating the risks of investigational drugs. Our findings highlight the need for medical centers to inform oncologists about RTT and other preapproval pathways so that they are able to address questions from patients interested in nontrial investigational drugs. [ABSTRACT FROM AUTHOR]

Premature commercialization of unproven stem cell interventions (SCIs) has received significant attention within the regenerative medicine community. Patients considering SCIs may encounter misinformation and seek out guidance from their physicians who are trusted brokers of health information. However, little is known about the perspectives of academic physician specialists toward the SCI industry. The purpose of this study was to capture the attitudes of physician specialists with experience addressing patient questions about unproven SCIs. The authors undertook 25 semi-structured interviews with academic physicians in cardiology, ophthalmology, orthopedics, pulmonology and neurology primarily from one academic center. The authors identified two major themes: concerns and mediators of appropriateness of offering SCIs as therapies to patients. Specialists were generally aware of the industry and reported scientific and commercial concerns, including the scientific uncertainty of SCIs, medical harms to patients, misleading marketing and its impact on patient informed consent and economic harms due to large out-of-pocket costs for patients. All specialists outside of orthopedics voiced that it was inappropriate to be offering SCIs to patients today. These views were informed by previously expressed concerns surrounding safety and properly informing patients, levels of evidence needed prior to offering SCIs therapeutically and desired qualifications for clinicians. Among the specialties, orthopedists reported that under certain conditions, SCIs may be appropriate for patients with limited clinical options but only when safety is adequate, expectations are managed and patients are well informed about the risks and chances of benefit. Most participants expressed a desire for phase 3 studies and Food and Drug Administration approval prior to marketing SCIs, but some also shared the challenges associated with upholding these thresholds of evidence, especially when caring for out-of-option patients. The authors' results suggest that medical specialists are aware of the industry and express several concerns surrounding SCIs but differ in their views on the appropriateness and clinical evidence necessary for offering SCIs currently to patients. Additional educational tools may help physicians with patient engagement and expectation management surrounding SCIs. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing number of older adults (≥65 years) who live with type 1 diabetes. We qualitatively explored experiences and perspectives regarding type 1 diabetes self‐management and treatment decisions among older adults, focusing on adopting care advances such as continuous glucose monitoring (CGM). Methods: Among a clinic‐based sample of older adults ≥65 years with type 1 diabetes, we conducted a series of literature and expert informed focus groups with structured discussion activities. Groups were transcribed followed by inductive coding, theme identification, and inference verification. Medical records and surveys added clinical information. Results: Twenty nine older adults (age 73.4 ± 4.5 years; 86% CGM users) and four caregivers (age 73.3 ± 2.9 years) participated. Participants were 58% female and 82% non‐Hispanic White. Analysis revealed themes related to attitudes, behaviours, and experiences, as well as interpersonal and contextual factors that shape self‐management and outcomes. These factors and their interactions drive variability in diabetes outcomes and optimal treatment strategies between individuals as well as within individuals over time (i.e. with ageing). Participants proposed strategies to address these factors: regular, holistic needs assessments to match people with effective self‐care approaches and adapt them over the lifespan; longitudinal support (e.g., education, tactical help, sharing and validating experiences); tailored education and skills training; and leveraging of caregivers, family, and peers as resources. Conclusions: Our study of what influences self‐management decisions and technology adoption among older adults with type 1 diabetes underscores the importance of ongoing assessments to address dynamic age‐specific needs, as well as individualized multi‐faceted support that integrates peers and caregivers. [ABSTRACT FROM AUTHOR]

This paper explores the ethical considerations surrounding human papillomavirus (HPV) vaccination for adolescents in three special circumstances: a) the preadolescent/adolescent vaccination target population; b) the sexually transmitted nature of the virus; and c) the delay in boys' vaccination recommendations as compared to initial girls' recommendations. Examining the gendered components of the HPV vaccine, medical consent, and assent for minors; the changing relationship between medical providers and patients; and the tension between individual and public health, I conclude that, in most cases, parents are ethically required to choose vaccination for their children. [ABSTRACT FROM AUTHOR]

• CGM can improve glycemic management and increase quality of life for older adults living with type 1 diabetes, yet there are known age-specific barriers to technology use in this age group. • This study used a participatory approach to system dynamics modeling called group model building to engage older adults with type 1 diabetes (including CGM users and non-users) and their caregivers. To our knowledge, few studies to date have extended participatory systems science methods to engage older adult patients. • We present the first system model of the factors that influence CGM uptake and use over time, including the hypothesized ways in which they interact to reinforce versus inhibit CGM use through feedback loops. • The system model offers insight into the dynamic barriers or problematic patterns that may inhibit effective CGM use in older adults (i.e., negative, balancing loops), as well as where there are high-leverage points for interventions to promote sustained CGM use (i.e., positive, reinforcing loops). • Modeling the system structure illuminates opportunities to tailor education and support for older adults, using interventions that leverage key feedback loops at critical moments in the CGM learning curve to promote and sustained effective use. Continuous glucose monitoring (CGM) can reduce hypoglycemia in older adults with type 1 diabetes (T1D). We aimed to characterize factors that influence effective use in this age group. Older adults with type T1D (age ≥ 65) and their caregivers participated in one of a series of parallel group model building workshops, a participatory approach to system dynamics involving drawing and scripted group activities. Data were synthesized in a qualitative model of the hypothesized system of factors producing distinct patterns of CGM use in older adults. The model was validated through virtual follow-up interviews. Data were collected from 33 participants (four patient-caregiver dyads, mean age 73.8 ± 4.4 years [range 66–85 years]; 16 % non-CGM users, 79 % pump users). The system model delineates drivers of CGM uptake, drivers of ongoing CGM use, and feedback loops that either reinforce or counteract future CGM use. Participants emphasized the importance of different sets of feedback loops at different points in the duration of CGM use. The holistic system model underscores that factors and feedback loops driving effective CGM use in older adults are both individualized and dynamic (e.g., changing over time), suggesting opportunities for staged and tailored age-specific education and support. [ABSTRACT FROM AUTHOR]

This study describes the credentials and scope of training of physician and nonphysician practitioners working for US companies marketing unproven stem cell procedures. [ABSTRACT FROM AUTHOR]