Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.

OBJECTIVE: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions. STUDY DESIGN: In this observational cohort study, we enrolled parents and physicians caring for infants with neurologic conditions in advance of a family conference. Parent-physician dyads completed a postconference survey targeting expected neurologic outcomes across 3 domains (motor, speech, and cognition) using a 6-point scale. Prognostic discordance was defined as a difference of ≥2 response options and was considered moderate (difference of 2-3 response options) or high (difference of 4-5 response options). Responses were categorized as differences in belief and/or differences in understanding using an existing paradigm. RESULTS: Forty parent-physician dyads of 28 infants completed surveys. Parent-physician discordance about prognosis occurred in ≥1 domain in the majority of dyads (n = 28/40, 70%). Discordance was generally moderate in degree (n = 23/28, 82%) and occurred with similar frequency across all domains. Of parent-physician dyads with discordance, the majority contained a difference in understanding in at least 1 domain (n = 25/28, 89%), while a minority contained a difference of belief (n = 6/28, 21%). When discordance was present, parents were typically more optimistic in their predictions compared with physicians (n = 25/28, 89%). CONCLUSIONS: Differing perceptions about the prognosis of critically ill infants are common and due to differences in both understanding and belief. These findings can be used to develop targeted interventions to improve prognostic communication.

More Than a Headache: Lived Experience of Migraine in Youth.

BACKGROUND: Migraine is the leading cause of disability among adolescents and young adults. We aimed to characterize the impact of migraine on the experience of children, adolescents, and caregivers. METHODS: This descriptive qualitative study recruited youth aged four to 18 years with migraine and their caregivers from the multicenter, prospective Pediatric Migraine Registry between 2020 and 2021. Participants completed semistructured interviews targeting the lived experience of migraine. A conventional content analysis approach was used to analyze data. RESULTS: Thirty enrolled dyads (n = 30 children and adolescents, n = 29 caregivers) completed 59 interviews (n = 29 child and adolescent interviews, n = 30 caregiver interviews). Children and adolescents had a median age of 15 years and experienced a median of 13.5 headache days per month. Caregivers had a median age of 44 years and predominantly identified as mothers (n = 28). We identified three themes: (1) Impact on emotional well-being: participants described how their migraine experience included feelings of isolation, depression, and irritability alongside the need for social support; (2) Impact on daily life: participants described how symptoms and unpredictability impacted their ability to perform activities of daily living; and (3) Impact on school: participants described how migraine impacted their school experience, including threatened attendance and worsened performance. CONCLUSIONS: In this cohort of youth and their caregivers, we identified salient themes to characterize the experience of migraine. Our findings underscore the urgent need for effective migraine treatments and interventions targeting co-occurring mental health conditions, peer relationships, and school support.

Deciding Whether to Take Sacubitril/Valsartan: How Cardiologists and Patients Discuss Out-of-Pocket Costs.

Background Out-of-pocket costs have significant implications for patients with heart failure and should ideally be incorporated into shared decision-making for clinical care. High out-of-pocket cost is one potential reason for the slow uptake of newer guideline-directed medical therapies for heart failure with reduced ejection fraction. This study aims to characterize patient-cardiologist discussions involving out-of-pocket costs associated with sacubitril/valsartan during the early postapproval period. Methods and Results We conducted content analysis on 222 deidentified transcripts of audio-recorded outpatient encounters taking place between 2015 and 2018 in which cardiologists (n=16) and their patients discussed whether to initiate, continue, or discontinue sacubitril/valsartan. In the 222 included encounters, 100 (45%) contained discussions about cost. Cost was discussed in a variety of contexts: when sacubitril/valsartan was initiated, not initiated, continued, and discontinued. Of the 97 cost conversations analyzed, the majority involved isolated discussions about insurance coverage (64/97 encounters; 66%) and few addressed specific out-of-pocket costs or affordability (28/97 encounters; 29%). Discussion of free samples of sacubitril/valsartan was common (52/97 encounters; 54%), often with no discussion of a longer-term plan for addressing cost. Conclusions Although cost conversations were somewhat common in patient-cardiologist encounters in which sacubitril/valsartan was discussed, these conversations were generally superficial, rarely addressing affordability or cost-value judgments. Cardiologists frequently provided patients with a course of free sacubitril/valsartan samples without a plan to address the cost after the samples ran out.

Clinician Perspectives on Managing Chronic Pain After Curative-Intent Cancer Treatment.

PURPOSE: Among cancer survivors who have completed curative-intent treatment, the high prevalence and adverse consequences of chronic pain are well documented. Yet, research on clinicians' experiences with and perspectives on managing chronic pain among cancer survivors is critically lacking. METHODS: We conducted semistructured interviews with 17 clinicians (six oncology, three palliative care, and eight primary care) affiliated with an academic medical center. Interview questions addressed clinicians' experiences with and perspectives on managing chronic pain (with or without opioid therapy) during the transition from active treatment to survivorship. A multidisciplinary team conducted content analysis of interview transcripts to identify and refine themes related to current practices and challenges in managing chronic pain in this context. RESULTS: Overall, clinicians perceived chronic pain to be relatively uncommon among cancer survivors. Identified challenges included a lack of clarity about which clinician (or clinicians) are best positioned to manage chronic pain among cancer survivors, and (relatedly) complexities introduced by long-term opioid management, with many clinicians describing this practice as outside their skill set. Additionally, although most clinicians recognized chronic pain as a biopsychosocial phenomenon, they described challenges with effectively managing psychosocial stressors, including difficulty accessing mental or behavioral health services for cancer survivors. CONCLUSION: Discovered challenges highlight unmet needs related to cancer survivor-clinician communication about chronic pain and the absence of a chronic pain management home for cancer survivors, including those requiring long-term opioid therapy. Research evaluating routine pain monitoring and accessible, tailored models of multimodal pain care in survivorship may help to address these challenges.

Beyond pain control: Outcome and treatment preferences in pediatric migraine.

OBJECTIVE: The objective of this study was to describe treatment preferences and perceived quality of existing outcome measures among children and adolescents with migraine and their caregivers. BACKGROUND: Across disciplines, there is increasing recognition of the value of direct input from stakeholders. Little empirical work has been done to determine what outcomes matter most to pediatric patients with migraine and their caregivers. METHODS: In this qualitative study, we recruited participants from the multicenter, prospective Pediatric Migraine Registry. We used stratified purposive sampling to recruit children and adolescents of varied ages and headache frequency. Patients with migraine and their caregivers completed semistructured interviews targeting treatment preferences and perceived quality of existing outcome measures. Emergent themes and subthemes were identified using conventional content analysis. RESULTS: Thirty dyads of children/adolescents and their caregivers were enrolled and completed 59 interviews (n = 29 children/adolescent interviews and n = 30 caregiver interviews). Three themes emerged. (1) Symptom relief: Looking beyond headache resolution: Participants described the value of outcomes in addition to pain relief, including a reduction in migraine intensity and improvement in non-pain symptoms. (2) Trade-offs between side effects and relief: Participants described cost-benefit analyses that can occur with headache treatment and acknowledged the impact of drug side effects on daily life and medication adherence. (3) Child-centered treatment: Participants described medication attributes salient to the pediatric context, including age-appropriate routes of administration and adequate safety data. CONCLUSIONS: Children, adolescents, and caregivers impacted by migraine value outcomes in addition to traditionally studied migraine endpoints. Participants valued decreased pain severity, even in the absence of pain resolution. Participants also prioritized the absence of side effects and key medication attributes, including fast onset and age-appropriate routes of administration. These results highlight an opportunity to design patient-centered clinical trials, develop drugs, and support product labeling that align with the outcomes valued most by children and adolescents with migraine and their caregivers.

Decision Making for Infants With Neurologic Conditions.

Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making.

Radiology Stereotypes, Application Barriers, and Hospital Integration: A Mixed-methods Study of Medical Student Perceptions of Radiology.

RATIONALE AND OBJECTIVES: Limited exposure to radiology by medical students can perpetuate negative stereotypes and hamper recruitment efforts. The purpose of this study is to understand medical students' perceptions of radiology and how they change based on medical education and exposure. MATERIALS AND METHODS: A single-institution mixed-methods study included four groups of medical students with different levels of radiology exposure. All participants completed a 16-item survey regarding demographics, opinions of radiology, and perception of radiology stereotypes. Ten focus groups were administered to probe perceptions of radiology. Focus groups were coded to identify specific themes in conjunction with the survey results. RESULTS: Forty-nine participants were included. Forty-two percent of participants had positive opinions of radiology. Multiple radiology stereotypes were identified, and false stereotypes were diminished with increased radiology exposure. Opinions of the impact of artificial intelligence on radiology closely aligned with positive or negative views of the field overall. Multiple barriers to applying for a radiology residency position were identified including board scores and lack of mentorship. COVID-19 did not affect perceptions of radiology. There was broad agreement that students do not enter medical school with many preconceived notions of radiology, but that subsequent exposure was generally positive. Exposure both solidified and eliminated various stereotypes. Finally, there was general agreement that radiology is integral to the health system with broad exposure on all services. CONCLUSION: Medical student perceptions of radiology are notably influenced by exposure and radiology programs should take active steps to engage in medical student education.

"Meet people where they are": a qualitative study of community barriers and facilitators to HIV testing and HIV self-testing among African Americans in urban and rural areas in North Carolina.

BACKGROUND: HIV testing programs in the United States aim to reach ethnic minority populations who experience high incidence of HIV, yet 40% of African Americans have never been tested for HIV. The objective of this study is to identify community-based strategies to increase testing among African Americans in both urban and rural areas. METHODS: This study conducted focus group discussions (FGDs) informed by community-based participatory research principles to examine African American's concerns and ideas around HIV testing and HIV self-testing. Participants included highly affected (i.e., PLWH, MSM, PWID, low-income, teens and young adults) populations from African American communities in North Carolina, aged 15 years and older. We digitally transcribed and analyzed qualitative data using MAXQDA and axial coding to identify emergent themes. RESULTS: Fifty-two men and women between 15 to 60 years old living in urban (n=41) and rural (n=11) areas of North Carolina participated in focus group discussions. HIV testing barriers differed by HIV testing setting: facility-based, community-based, and HIV self-testing. In community-based settings, barriers included confidentiality concerns. In facility-based settings (e.g., clinics), barriers included negative treatment by healthcare workers. With HIV self-testing, barriers included improper use of self-testing kits and lack of post-test support. HIV testing facilitators included partnering with community leaders, decentralizing testing beyond facility-based sites, and protecting confidentiality. CONCLUSIONS: Findings suggest that HIV testing concerns among African Americans vary by HIV testing setting. African Americans may be willing to test for HIV at community events in public locations if client confidentiality is preserved and use HIV self-testing kits in private if post-test social support and services are provided. These community-identified facilitators may improve African American testing rates and uptake of HIV self-testing kits.

Crowdsourcing and community engagement: a qualitative analysis of the 2BeatHIV contest.

Background: As HIV cure research advances, it is important to engage local communities. Crowdsourcing may be an effective, bottom-up approach. Crowdsourcing contests elicit public contributions to solve problems and celebrate finalists. We examine the development of a crowdsourcing contest to understand public perspectives about HIV cure research. Methods: We used flyers, emails, online advertisement and phone calls to recruit a convenience sample of community members to participate in focus-group discussions. Participants developed a contest name, logo and hashtag. Qualitative analysis identified emergent themes in the focus group transcripts. Results: Seventy-one people participated in four focus groups. Emergent themes for HIV cure engagement included: (1) emphasising collective approaches to HIV cure; (2) dispelling myths to spur discussion; (3) using HIV cure as motivation for participation; and (4) using creative community engagement. Conclusion: Crowdsourcing contests may be useful for engaging local communities, developing culturally tailored awareness campaign messaging, and encouraging the public to learn more about HIV cure research.

HIV cure research community engagement in North Carolina: a mixed-methods evaluation of a crowdsourcing contest.

OBJECTIVES: The purpose of this study was to evaluate the feasibility of using a crowdsourcing contest to promote HIV cure research community engagement. METHODS: Crowdsourcing contests are open calls for community participation to achieve a task, in this case to engage local communities about HIV cure research. Our contest solicited images and videos of what HIV cure meant to people. Contestants submitted entries to IdeaScale, an encrypted online contest platform. We used a mixed-methods study design to evaluate the contest. Engagement was assessed through attendance at promotional events and social media user analytics. Google Analytics measured contest website user-engagement statistics. Text from contest video entries was transcribed, coded and analysed using MAXQDA. RESULTS: There were 144 attendees at three promotional events and 32 entries from 39 contestants. Most individuals who submitted entries were black (n=31), had some college education (n=18) and were aged 18-23 years (n=23). Social media analytics showed 684 unique page followers, 2233 unique page visits, 585 unique video views and an overall reach of 80,624 unique users. Contest submissions covered themes related to the community's role in shaping the future of HIV cure through education, social justice, creativity and stigma reduction. CONCLUSION: Crowdsourcing contests are feasible for engaging community members in HIV cure research. Community contributions to crowdsourcing contests provide useful content for culturally relevant and locally responsive research engagement.