'It's like you don't have a roadmap really': using an antiracism framework to analyze patients' encounters in the cancer system.

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

What Care Models Have Generalists Implemented to Address Transition from Pediatric to Adult Care?: a Qualitative Study.

BACKGROUND: The transition from pediatric to adult care is a critical period for young adults with childhood-onset conditions. General internists are tasked with participating in the care of this vulnerable population. Existing guidelines regarding transition do not fully address structural or organizational characteristics of practices that facilitate transition. Moreover, literature regarding transition has focused on pediatric subspecialty settings, leaving internists with little guidance after transfer. OBJECTIVES: To better understand post-transfer transitional care by describing care models that primary care providers have implemented, and examining common features of generalist physicians' experiences providing transitional care. DESIGN: Qualitative methods, semi-structured interviews. PARTICIPANTS: Nineteen generalist-trained physicians from across the USA, engaged in transition-focused and/or ongoing care of adolescents and young adults with childhood-onset conditions. APPROACH: Content and grounded theory analyses. KEY RESULTS: Participants included nineteen physicians from seventeen institutions. Most (89%) were from academic medical centers. About 80% had completed a combined internal medicine-pediatrics residency. About 70% worked with clinic staff who were dedicated to transition. Practice structures fell into four main care models: (1) primary care in adult settings; (2) transition support and primary care in pediatric settings; (3) a blend of pediatric and adult care elements forming a bridge during transition; and (4) a transition consultative service. Most provided primary care for adults with childhood-onset conditions within larger adult-oriented primary care practices. Common features across interviews included taking extra time with patients both during and between visits and an interdisciplinary team-based approach. Shared practice strategies and philosophies emphasized care coordination, focus on the whole patient beyond immediate health concerns, and willingness to learn from practice and from families. CONCLUSIONS: Participants used disparate care models. Common features and strategies among interviews highlight key functions and attributes of transitional care across settings, suggest important elements of care post-transfer, and clarify the role of generalists.

Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives.

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

Assessing Injury and Violence Prevention in North Carolina's Local Health Departments.

BACKGROUND: Injury and violence-related morbidity and mortality present a major public health problem in North Carolina. However, the extent to which local health departments (LHDs) engage in injury and violence prevention (IVP) has not been well described. OBJECTIVES: One objective of the current study is to provide a baseline assessment of IVP in the state's LHDs, describing capacity, priorities, challenges, and the degree to which programs are data-driven and evidence-based. The study will also describe a replicable, cost-effective method for systematic assessment of regional IVP. DESIGN: This is an observational, cross-sectional study that was conducted through a survey of North Carolina's 85 LHDs. RESULTS: Representatives from 77 LHDs (91%) responded. Nearly one-third (n = 23; 30%) reported that no staff members were familiar with evidence-based interventions in IVP, and over one-third (n = 29; 38%) reported that their LHD did not train staff in IVP. Almost one-half (n = 37; 48%) had no dedicated funding for IVP. On average, respondents said that about half of their programs were evidence-based; however, there was marked variation (mean, 52%; standard deviation = 41). Many collaborated with diverse partners including law enforcement, hospitals, and community-based organizations. There was discordance between injury and violence burden and programming. Overall, 53% of issues listed as top local problems were not targeted in their LHDs' programs. CONCLUSIONS: Despite funding constraints, North Carolina's LHDs engaged in a broad range of IVP activities. However, programming did not uniformly address state injury and violence priorities, nor local injury and violence burden. Staff members need training in evidence-based strategies that target priority areas. Multisector partnerships were common and increased LHDs' capacity. These findings are actionable at the state and local level.

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

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