Pre-Pandemic and Recent Oral and Medical Health Care Utilization among Young American Indian Children and Their Caregivers.

Children from diverse ethnic groups are at significantly increased risk for dental caries. In particular, American Indian (AI) children have the highest incidence of detal caries of any ethnic group. The COVID-19 pandemic dramatically restricted health care access, including preventive oral health care. Given this context, it is unclear whether or not preventive oral health care for AI children has resumed since lockdown. To address this question, we surveyed adult AI caregivers (N = 152) of children aged 0-5 years, assessing recent (12-month) and pre-COVID (for caregivers of children aged 3-5 years) preventive oral and medical health services. We also examined medical health care access and utilization among caregivers. Among children aged 3-5 years old, both pre-pandemic and past year medical care utilization were generally high (80 and 90%, respectively) as was any oral health care utilization (64 & 78%, respectively). Oral health check-ups were more common over the last year (62%) compared to pre-COVID (44%). Recent health care utilization among children 1-5 years old in this sample were generally comparable to national estimates, except for higher reported preventive medical care (99% vs. 87.6%, respectively) and higher preventive oral care (96% vs. 59.6%, respectively). More caregivers reported delaying or foregoing needed health care due to COVID (28-38%) versus due to cost (8-17%). In this survey of AI caregivers, recent child preventive health care utilization was high, and changes in utilization following the lockdown phases of the pandemic were comparable for oral and medical health care.

How Primary Care Providers Talk to Patients about Genome Sequencing Results: Risk, Rationale, and Recommendation.

BACKGROUND: Genomics will play an increasingly prominent role in clinical medicine. OBJECTIVE: To describe how primary care physicians (PCPs) discuss and make clinical recommendations about genome sequencing results. DESIGN: Qualitative analysis. PARTICIPANTS: PCPs and their generally healthy patients undergoing genome sequencing. APPROACH: Patients received clinical genome reports that included four categories of results: monogenic disease risk variants (if present), carrier status, five pharmacogenetics results, and polygenic risk estimates for eight cardiometabolic traits. Patients' office visits with their PCPs were audio-recorded, and summative content analysis was used to describe how PCPs discussed genomic results. KEY RESULTS: For each genomic result discussed in 48 PCP-patient visits, we identified a "take-home" message (recommendation), categorized as continuing current management, further treatment, further evaluation, behavior change, remembering for future care, or sharing with family members. We analyzed how PCPs came to each recommendation by identifying 1) how they described the risk or importance of the given result and 2) the rationale they gave for translating that risk into a specific recommendation. Quantitative analysis showed that continuing current management was the most commonly coded recommendation across results overall (492/749, 66%) and for each individual result type except monogenic disease risk results. Pharmacogenetics was the most common result type to prompt a recommendation to remember for future care (94/119, 79%); carrier status was the most common type prompting a recommendation to share with family members (45/54, 83%); and polygenic results were the most common type prompting a behavior change recommendation (55/58, 95%). One-fifth of recommendation codes associated with monogenic results were for further evaluation (6/24, 25%). Rationales for these recommendations included patient context, family context, and scientific/clinical limitations of sequencing. CONCLUSIONS: PCPs distinguish substantive differences among categories of genome sequencing results and use clinical judgment to justify continuing current management in generally healthy patients with genomic results.

Estimating HIV Medication Adherence and Persistence: Two Instruments for Clinical and Research Use.

Antiretroviral therapy (ART) requires lifelong daily oral therapy. While patient characteristics associated with suboptimal ART adherence and persistence have been described in cohorts of HIV-infected persons, these factors are poor predictors of individual medication taking behaviors. We aimed to create and test instruments for the estimation of future ART adherence and persistence for clinical and research applications. Following formative work, a battery of 148 items broadly related to HIV infection and treatment was developed and administered to 181 HIV-infected patients. ART adherence and persistence were assessed using electronic monitoring for 3 months. Perceived confidence in medication taking and self-reported barriers to adherence were strongest in predicting non-adherence over time. Barriers to adherence (e.g., affordability, scheduling) were the strongest predictors of non-adherence, as well as 3- and 7-day non-persistence. A ten-item battery for prediction of these outcomes ( www.med.unc.edu/ncaidstraining/adherence/for-providers ) and a 30-item battery reflective of underlying psychological constructs can help identify and study individuals at risk for suboptimal ART adherence and persistence.

Patient-physician discussions about costs: definitions and impact on cost conversation incidence estimates.

BACKGROUND: Nearly one in three Americans are financially burdened by their medical expenses. To mitigate financial distress, experts recommend routine physician-patient cost conversations. However, the content and incidence of these conversations are unclear, and rigorous definitions are lacking. We sought to develop a novel set of cost conversation definitions, and determine the impact of definitional variation on cost conversation incidence in three clinical settings. METHODS: Retrospective, mixed-methods analysis of transcribed dialogue from 1,755 outpatient encounters for routine clinical management of breast cancer, rheumatoid arthritis, and depression, occurring between 2010-2014. We developed cost conversation definitions using summative content analysis. Transcripts were evaluated independently by at least two members of our multi-disciplinary team to determine cost conversation incidence using each definition. Incidence estimates were compared using Pearson's Chi-Square Tests. RESULTS: Three cost conversation definitions emerged from our analysis: (a) Out-of-Pocket (OoP) Cost--discussion of the patient's OoP costs for a healthcare service; (b) Cost/Coverage--discussion of the patient's OoP costs or insurance coverage; (c) Cost of Illness- discussion of financial costs or insurance coverage related to health or healthcare. These definitions were hierarchical; OoP Cost was a subset of Cost/Coverage, which was a subset of Cost of Illness. In each clinical setting, we observed significant variation in the incidence of cost conversations when using different definitions; breast oncology: 16, 22, 24% of clinic visits contained cost conversation (OOP Cost, Cost/Coverage, Cost of Illness, respectively; P < 0.001); depression: 30, 38, 43%, (P < 0.001); and rheumatoid arthritis, 26, 33, 35%, (P < 0.001). CONCLUSIONS: The estimated incidence of physician-patient cost conversation varied significantly depending on the definition used. Our findings and proposed definitions may assist in retrospective interpretation and prospective design of investigations on this topic.

Teaching sustainability: does style matter?

Purpose: This paper aims to analyze how a tangram activity improved students' abilities to explain sustainability, articulate a positive perception of sustainable design and relate sustainability with innovation in engineering design. Design/methodology/approach: The concept of paradigm shift was introduced in the classroom by using a tangram activity to help students understand that sustainable design requires out-of-the-box thinking. Instructors from three institutions teaching various levels of sustainability courses to engineering majors used the activity to introduce sustainable design, then measured the understanding and appreciation of the concepts introduced through the tangram activity with pre- and post-activity surveys. Findings: Findings from the study indicate that students' perceptions of sustainability significantly improved due to the activity, without regard to the institution. The activity also significantly improved students understanding of the connection between sustainability and innovation, across all three institutions, across all majors and across all years of study except second-year students. Improving engineering students' views on sustainability may lead, over time, to changes in the industry, in which environmental performance is incorporated into the engineering design process. Originality/value: Active learning approaches are needed for affective-domain learning objectives in the sustainability field for students to learn the necessary attitudes, values and motivations to implement sustainability in engineering design. Simple, easily implemented active learning techniques, such as the tangram activity presented here, can be implemented across the curriculum or to the public to introduce the paradigm shift necessary with sustainable design.

Community based participatory research approaches to combat oral health inequities among American Indian and Alaska Native populations.

American Indian and Alaska Native (AI/AN) communities have experienced a history of systemic racism and still face significant oral health disparities. These disparities extend to the youngest community members in the form of early childhood caries (ECC). Although behavior and biology contribute to ECC, the conditions where people live, grow, and work, and the systems and political and economic forces that shape individual health outcomes, are thought to greatly impact ECC among AI/AN populations. To address ECC in AI/AN communities, we used a community based participatory approach that incorporated social determinants of health. We found that implementing culturally-tailored, culturally-centered, and AI/AN-created materials for ECC interventions is viewed favorably by community members and tribal leaders. Because of the complexity of ECC in AI/AN communities we adopted a bundled approach of best practices to reduce ECC including: (1) incorporating locally, contextually, and culturally relevant strategies to present recommended ECC prevention approaches; (2) employing AI/AN community members as educators; (3) utilizing motivational interviewing with expectant mothers; and (4) providing fluoride varnish. Our work underscores the importance of developing trusting partnerships with each other and with our communities, drawing upon the insights of community advisory board members, and eliciting formative assessment data from tribal members to gain a more holistic understanding of our participants' lived experience to design relevant intervention materials. Incorporating local knowledge and situating Western oral health prevention approaches within culturally aligned frameworks can enhance partnerships and create sustainable materials for community work.

Building Research Infrastructure: The Development of a Technical Assistance Group-Service Center at an RCMI.

As one of the Research Centers for Minority Institutions (RCMI), the Southwest Health Equity Research Collaborative (SHERC) worked over the first five-year period of funding to foster the advancement of Early Stage Investigators, enhance the quality of health disparities research, and increase institution research capacity in basic Biomedical, Behavioral, and/or Clinical research; all priorities of RCMIs. In year 4, the Technical Assistance Group-Service Center (TAG-SC) was created to help achieve these goals. The TAG-SC provides one-on-one investigator project development support, including research design, data capture, and analysis. Successful implementation of the TAG-SC was tracked using Research Electronic Data Capture (REDCap), a secure, web-based software platform allowing for immediate tracking and evaluation processes. In the first two years, 86 tickets were submitted through the REDCap system for methodological support by TAG-SC experts (faculty and staff) for assistance with health-equity related research, primarily SHERC and externally funded Social/Behavioral research projects. The TAG-SC increased the research capacity for investigators, especially within the SHERC. In this manuscript, we describe the methods used to create the TAG-SC and the REDCap tracking system and lessons learned, which can help other RCMIs interested in creating a similar service center offering an innovative way to build methodological infrastructure.

A Formative Assessment of Social Determinants of Health Related to Early Childhood Caries in Two American Indian Communities.

In the United States, children from diverse ethnic groups and those with low socioeconomic status are at a significantly increased risk for early childhood caries. Despite the efforts focused on decreasing early childhood caries in American Indian (AI) populations, these children have the highest incidence of dental caries of any ethnic group, with four times the cases of untreated dental caries compared to white children. This qualitative formative assessment was conducted in two AI communities. Semi-structured interviews (n = 57) were conducted with caregivers and providers to understand the social and community contexts in which oral health behaviors and practices occur from the perspective of the caregivers, oral health care providers, and social service providers in the communities. The analysis was informed by the social determinants of health framework. The key social determinants of pediatric oral health relevant to our study communities included limited access to: oral health promoting nutritious foods, transportation for oral health appointments, and pediatric specialty care. This formative assessment provided locally and contextually relevant information to shape the development of an oral health clinical trial intervention to address early childhood caries in these two communities.

Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians.

BACKGROUND: Parents and clinicians caring for premature infants face high-stakes and time-sensitive decisions about care. We aimed to characterize how parents and clinicians discuss outcome in the context of decision-making for premature infants. METHODS: In this qualitative descriptive study, we used a case-based, prospective design. Cases of extreme prematurity were targeted. Parents and clinicians completed semistructured interviews about care decisions longitudinally in the first year of life. Interview data were analyzed by using directed content analysis. RESULTS: Sixteen parents and 53 clinicians of 10 infants completed 178 interviews (n = 115 parent; n = 63 clinician). Two primary themes emerged. First, parents and clinicians discussed prognostic information differently from each other. Parents focused on whether their infant would survive, whereas clinicians concentrated on neurologic outcome and the potential for life with disability. Parent discussion of the future was broad and rooted in hope and spirituality. Clinician prognostic language was narrowly focused and probabilistic. Second, we identified barriers and facilitators to a shared understanding of infant outcome. Clinicians perceived that parents were unaware of or unable to process important information about the big picture. Parents valued consistent therapeutic relationships; transitions of care and underused roles of the care team undermined this consistency. Clinical uncertainty forced parents and clinicians to "wait and see" about the future. CONCLUSIONS: Parents and clinicians discuss and weigh information about the future differently from each other as they consider choices for extremely premature infants. Future work should characterize the impact of these differences on prognostic communication and decision-making.

HIV Cure Research: Risks Patients Expressed Willingness to Accept.

Despite doing well on antiretroviral therapy, many people living with HIV have expressed a willingness to accept substantial risks for an HIV cure. To date, few studies have assessed the specific quantitative maximal risk that future participants might take; probed whether, according to future participants, the risk can be offset by the benefits; and examined whether taking substantial risk is a reasonable decision. In this qualitative study, we interviewed 22 people living with HIV and used standard gamble methodology to assess the maximum chance of death a person would risk for an HIV cure. We probed participants' reasoning behind their risk-taking responses. Conventional inductive content analysis was used to categorize key themes regarding decision-making. We found that some people would be willing to risk even death for an HIV cure, and some of their reasons were plausible and went far beyond the health-related utility of an HIV cure. We contend that people's expressed willingness to take substantial risk for an HIV cure should not be dismissed out of hand.

Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care.

CONTEXT: Palliative care (PC) model delivered by two large hospices and PC providers. OBJECTIVES: To understand study participants' knowledge of PC and acceptability of a new community-based PC model. METHODS: Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. RESULTS: Across 10 interviews and four focus groups (n = 4-10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. CONCLUSION: Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.

Financial Barriers and Lapses in Treatment and Care of HIV-Infected Adults in a Southern State in the United States.

Antiretroviral (ARV) adherence has largely been considered from the perspective of an individual's behavior with less attention given to potential structural causes for lapses in treatment, such as the cost of medications and care. HIV medication expense is typically covered by third party payers. However, private insurance premiums and deductibles may rise, or policies terminated such as with a change in employment. Likewise, a patient's eligibility for publicly funded coverage like state AIDS Drug Assistance Programs (ADAP) or Medicaid can also be lost. We conducted a one-time survey of a sample of 300 patients receiving HIV care at a single large academic center in the south of United States to examine lapses in HIV therapy due to financial reasons. We found that during the prior year, financial issues including medication cost or coverage led to a lapse in ARVs in 10% (n = 31) of participants. However, of the 42% (n = 125) participants who had been enrolled in ADAP at any time during the prior year, 21% (n = 26) reported an ARV lapse due to problems with ADAP or medication cost. Respondents cited ADAP's required semi-annual renewal process and other administrative issues as the cause of ARV lapses. The median duration of missed ARVs was 2 weeks (range of <1-23 weeks). Non-HIV medication and transportation to and from clinic costs were also identified as financial burdens to care by respondents. In conclusion, although conducted at a single medical center and one state, this study suggests that a significant minority of HIV-infected patients encounter financial barriers to ARV access, and this is paradoxically more common among those enrolled in the state ADAP. Streamlining, supporting, and simplifying ADAP renewal procedures will likely reduce lapses in ARV adherence and persistence.

Discussing Health Care Expenses in the Oncology Clinic: Analysis of Cost Conversations in Outpatient Encounters.

PURPOSE: ASCO identified oncologist-patient conversations about cancer costs as an important component of high-quality care. However, limited data exist characterizing the content of these conversations. We sought to provide novel insight into oncologist-patient cost conversations by determining the content of cost conversations in breast cancer clinic visits. METHODS: We performed content analysis of transcribed dialogue from 677 outpatient appointments for breast cancer management. Encounters featured 677 patients with breast cancer visiting 56 oncologists nationwide from 2010 to 2013. RESULTS: Cost conversations were identified in 22% of visits (95% CI, 19 to 25) and had a median duration of 33 seconds (interquartile range, 19 to 62). Fifty-nine percent of cost conversations were initiated by oncologists (95% CI, 51 to 67), who most commonly brought up costs for antineoplastic agents. By contrast, patients most frequently brought up costs for diagnostic tests. Thirty-eight percent of cost conversations mentioned cost-reducing strategies (95% CI, 30 to 46), which most commonly sought to lower patient costs for endocrine therapies and symptom-alleviating treatments. The three most commonly discussed cost-reducing strategies were: switching to a lower-cost therapy/diagnostic, changing logistics of the intervention, and facilitating copay assistance. CONCLUSION: We identified cost conversations in approximately one in five breast cancer visits. Cost conversations were mostly oncologist initiated, lasted < 1 minute, and dealt with a wide range of health care expenses. Cost-reducing strategies were mentioned in more than one third of cost conversations and often involved switching antineoplastic agents for lower-cost alternatives or altering logistics of diagnostic tests.

Discussing Out-of-Pocket Expenses During Clinical Appointments: An Observational Study of Patient-Psychiatrist Interactions.

OBJECTIVE: High out-of-pocket expenses for medical treatment have been associated with worse quality of life, decreased treatment adherence, and increased risk of adverse health outcomes. Treatment of depression potentially has high out-of-pocket expenses. Limited data characterize psychiatrist-patient conversations about health care costs. METHODS: The authors conducted content analysis from 422 outpatient psychiatrist-patient visits for medication management of major depressive disorder in community-based private practices nationwide from 2010 to 2014. RESULTS: Patients' health care expenses were discussed in 38% of clinic visits (95% confidence interval [CI]= 33%-43%). Uninsured patients were significantly more likely to discuss expenses than were patients enrolled in private or public plans (64%, 44%, and 30%, respectively; p<.001). Sixty-nine percent of cost conversations lasted less than one minute (median=36 seconds; interquartile range [IQR]=16-81 seconds). Cost conversations most frequently addressed psychotropic medications (51%). Physicians initiated 50% of cost conversations and brought up costs for psychotropic medications more often than did patients (62% versus 38%, p=.009). Conversely, a greater percentage of patient-initiated cost conversations addressed provider visit costs (27% versus 10%, p=.008). Overall, 45% of cost conversations mentioned cost-reducing strategies (CI=37%-53%). The most frequently discussed cost-reducing strategies were lowering cost by changing the source or timing of an intervention (for example, changing pharmacies), providing free samples, and switching to a lower-cost therapy or diagnostic test. CONCLUSIONS: Psychiatrists and patients regularly discuss patients' health care costs in visits for depression. These discussions cover a variety of clinical topics and frequently include strategies to lower patients' costs.

Study Of Physician And Patient Communication Identifies Missed Opportunities To Help Reduce Patients' Out-Of-Pocket Spending.

Some experts contend that requiring patients to pay out of pocket for a portion of their care will bring consumer discipline to health care markets. But are physicians prepared to help patients factor out-of-pocket expenses into medical decisions? In this qualitative study of audiorecorded clinical encounters, we identified physician behaviors that stand in the way of helping patients navigate out-of-pocket spending. Some behaviors reflected a failure to fully engage with patients' financial concerns, from never acknowledging such concerns to dismissing them too quickly. Other behaviors reflected a failure to resolve uncertainty about out-of-pocket expenses or reliance on temporary solutions without making long-term plans to reduce spending. Many of these failures resulted from systemic barriers to health care spending conversations, such as a lack of price transparency. For consumer health care markets to work as intended, physicians need to be prepared to help patients navigate out-of-pocket expenses when financial concerns arise during clinical encounters.

What Strategies Do Physicians and Patients Discuss to Reduce Out-of-Pocket Costs? Analysis of Cost-Saving Strategies in 1,755 Outpatient Clinic Visits.

BACKGROUND: More than 1 in 4 Americans report difficulty paying medical bills. Cost-reducing strategies discussed during outpatient physician visits remain poorly characterized. OBJECTIVE: We sought to determine how often patients and physicians discuss health care costs during outpatient visits and what strategies, if any, they discussed to lower patient out-of-pocket costs. DESIGN: Retrospective analysis of dialogue from 1,755 outpatient visits in community-based practices nationwide from 2010 to 2014. The study population included 677 patients with breast cancer, 422 with depression, and 656 with rheumatoid arthritis visiting 56 oncologists, 36 psychiatrists, and 26 rheumatologists, respectively. RESULTS: Thirty percent of visits contained cost conversations (95% confidence interval [CI], 28 to 32). Forty-four percent of cost conversations involved discussion of cost-saving strategies (95% CI, 40 to 48; median duration, 68 s). We identified 4 strategies to lower costs without changing the care plan. They were, in order of overall frequency: 1) changing logistics of care, 2) facilitating co-pay assistance, 3) providing free samples, and 4) changing/adding insurance plans. We also identified 4 strategies to reduce costs by changing the care plan: 1) switching to lower-cost alternative therapy/diagnostic, 2) switching from brand name to generic, 3) changing dosage/frequency, and 4) stopping/withholding interventions. Strategies were relatively consistent across health conditions, except for switching to a lower-cost alternative (more common in breast oncology) and providing free samples (more common in depression). LIMITATION: Focus on 3 conditions with potentially high out-of-pocket costs. CONCLUSIONS: Despite price opacity, physicians and patients discuss a variety of out-of-pocket cost reduction strategies during clinic visits. Almost half of cost discussions mention 1 or more cost-saving strategies, with more frequent mention of those not requiring care-plan changes.

Communication challenges for nongeneticist physicians relaying clinical genomic results.

AIM: Identify the behavioral challenges to the use of genome sequencing (GS) in a clinical setting. MATERIALS & METHODS: We observed how general internists and nongenetic specialists delivered GS results to patients enrolled in the MedSeq Project. Using transcripts of such disclosure interactions, we made qualitative observations of communication behaviors that could limit the usefulness of GS results until reaching the point of thematic saturation. RESULTS: Findings included confusion regarding genomic terminology, difficulty with the volume or complexity of information and difficulties communicating complex risk information to patients. We observed a broad dismissal of clinical value of GS by some physicians and sometimes ineffective communication regarding health behavior change. CONCLUSION: Overcoming these behavioral challenges is necessary to make full use of clinical GS results.

Infertility caused by HCG autoantibody.

An anti-hCG autoantibody was found in a patient with a 9-yr history of secondary infertility. Although the patient had regular menstrual cycles, had conceived spontaneously, and had good hormonal and follicular responses to gonadotropic stimulation regimens during the in vitro fertilization work-up, she presented with apparent recurrent pregnancy loss associated with prolonged raised hCG levels. Initially the presence of a high mol wt hCG complex was demonstrated in the serum by gel chromatography. The binding of [(125)I]recombinant hCG to a serum sample and subsequently to the affinity-purified IgG from the same sample revealed the presence of an hCG antibody. The antiserum was shown to be specific, with a low affinity (K(a), 1.4 x 10(6) liters/mol), but a high capacity (418 nmol/liter), for hCG. Cross-reaction with recombinant human FSH, recombinant human LH, hCG alpha, and hCG beta were low (<0.019%, 0.021%, 0.039%, and 0.006%, respectively). In addition, heat-inactivated serum and the affinity-purified IgG were shown to inhibit the action of hCG in an in vitro bioassay. We suggest that the persisting titer of the antibody to be responsible for the patient's infertility.