Ultraviolet radiation exposure to the face in patients with xeroderma pigmentosum and healthy controls: applying a novel methodology to define photoprotection behaviour.

BACKGROUND: In xeroderma pigmentosum (XP), the main means of preventing skin and eye cancers is extreme protection against ultraviolet radiation (UVR). Protection is most important for the face. OBJECTIVES: We aimed to assess how well patients with XP adhere to medical advice to protect against UVR by objectively estimating the mean daily dose of UVR to the face. METHODS: We objectively estimated the UVR dose to the face in 36 patients with XP and 25 healthy individuals over 3 weeks in the summer. We used a new methodology which combined UVR dose measurements from a wrist-worn dosimeter with an activity diary record of face photoprotection behaviour for each 15-min period spent outside. A protection factor was associated with each behaviour, and the data were analysed using a negative binomial mixed-effects model. RESULTS: The mean daily UVR dose (weighted for DNA damage capacity) to the face in the patients with XP was 0·13 standard erythemal doses (SEDs) (mean in healthy individuals = 0·51 SED). There was wide variation between patients (range < 0·01-0·48 SED/day). Self-caring adult patients had a very similar UVR dose to the face as cared-for patients (0·13 vs. 0·12 SED/day), despite photoprotecting much more poorly when outside, because the self-caring adults were outside in daylight much less. CONCLUSIONS: Photoprotection behaviour varies widely within the XP group indicating that nonadherence to photoprotection advice is a significant issue. The timing and duration of going outside are as important as photoprotective measures taken when outside, to determine the UVR exposure to the face. This new methodology will be of value in identifying the sources of UVR exposure in other conditions in which facial UVR exposure is a key outcome, particularly in patients with multiple nonmelanoma skin cancers.

Long-Acting Injectable ART and PrEP Among Women in Six Cities Across the United States: A Qualitative Analysis of Who Would Benefit the Most.

Long-acting injectable (LAI) modalities have been developed for ART and PrEP. Women face unique barriers to LAI use yet little research has examined women's perceptions of potential LAI HIV therapy candidates. We conducted 89 in-depth interviews at six Women's Interagency HIV Study (WIHS) sites with women living with HIV (n = 59) and HIV-negative women (n = 30) from 2017 to 2018. Interviews were recorded, transcribed, and analyzed using thematic content analysis. Participants identified specific sub-populations who could most benefit from LAI over daily pills: (1) young people; (2) women with childcare responsibilities; (3) people with adherence-related psychological distress; (4) individuals with multiple sex partners; and (5) people facing structural insecurities such as homelessness. Women are underserved by current HIV care options and their perspectives are imperative to ensure a successful scale-up of LAI PrEP and LAI ART that prioritizes equitable access and benefit for all individuals.

Interest in Long-Acting Injectable Pre-exposure Prophylaxis (LAI PrEP) Among Women in the Women's Interagency HIV Study (WIHS): A Qualitative Study Across Six Cities in the United States.

Long-acting injectable (LAI) pre-exposure prophylaxis (PrEP) has the potential to facilitate adherence and transform HIV prevention. However, little LAI PrEP research has occurred among women, who face unique barriers. We conducted 30 in-depth interviews with HIV-negative women from 2017-2018 across six sites (New York; Chicago; San Francisco; Atlanta; Washington, DC; Chapel Hill) of the Women's Interagency HIV Study. Interviews were recorded, transcribed, and analyzed using thematic content analysis. Few women expressed interest in PrEP and when prompted to choose a regimen, 55% would prefer LAI, 10% daily pills, and 33% said they would not take PrEP regardless of formulation. Perceived barriers included: (1) the fear of new-and perceived untested-injectable products and (2) potential side effects (e.g., injection-site pain, nausea). Facilitators included: (1) believing shots were more effective than pills; (2) ease and convenience; and (3) confidentiality. Future studies should incorporate women's LAI PrEP-related experiences to facilitate uptake.

Barriers and facilitators to growth monitoring and promotion in Nepal: Household, health worker and female community health volunteer perceptions.

Growth monitoring and promotion (GMP) is both a service for diagnosing inadequate child growth in its earliest stages and a delivery platform for nutrition counselling. The widespread use of GMP services in developing countries has the potential to substantially reduce persistent child undernutrition through early diagnosis and by linking caregivers and their children to key health and nutrition services. However, researchers have questioned the effectiveness of GMP services, which are frequently undermined by underdeveloped health systems and inconsistent implementation. This analysis examined both supply- and demand-side factors for GMP utility in Nepal from the perspectives of beneficiaries and service providers, particularly focusing on three components of GMP: growth assessment, analysis of growth status and counselling. The most common factors influencing GMP uptake included beneficiaries' perceptions of the relative importance of GMP and the knowledge and skill of frontline workers. Both providers and beneficiaries viewed GMP as a secondary health and nutrition activity and therefore less important than curative services. We found deficits in GMP-related knowledge and skills among providers (i.e. health workers and female community health volunteers), as well as indications of poor training quality and coverage. Furthermore, we found variation in GMP utilization by maternal age, education and residency (alone, nuclear or extended), as well as household socio-economic well-being and rurality. This study is the first to assess factors influencing both beneficiaries and service providers for GMP utilization. Further research is needed to explore the implementation of improved GMP protocols and to evaluate facility-level implementation barriers.

Public Libraries: A Community-Level Resource to Advance Population Health.

Policy makers and public health practitioners rarely consider public libraries to be part of the health system, even though they possess several characteristics that suggest unrealized potential to advance population health. This scoping review uses an adapted social determinants framework to categorize current health-related work conducted by public libraries in the United States and to discuss libraries' potential as 'meso-level' community resources to improve population health. Our discussion of libraries contributes to scholarship on place-based health disparities, by emphasizing the potential impact of institutions that are modifiable through social policy-e.g., parks, community centers, schools-and which have a conceptually clear or empirically documented relationship to health.

Robotic vs. laparoscopic ventral mesh rectopexy for external rectal prolapse and rectal intussusception: a systematic review.

BACKGROUND: Laparoscopic ventral mesh rectopexy (LVR) is a treatment with promising results in external rectal prolapse, rectal intussusception, and rectocele. Because of the emergence of robotic-assisted surgery and the technical advantage it provides, we examined the potential role and place of robotic surgery in ventral rectopexy. METHODS: MEDLINE, PubMed, and other databases were searched, by two independent reviewers, to identify studies comparing robotic to laparoscopic ventral mesh rectopexy. The primary outcome was the rate of unplanned conversion to open. The secondary outcomes were morbidity, length of hospital stay and recurrence rate. RESULTS: Five studies (4% male, n = 259) met the inclusion criteria. All 5 studies reported on conversion rate and showed no significant difference between the conversion rate of robotic and laparoscopic groups [OR 0.58 (95% CI 0.09-3.77)]. Robotic surgery was also similar to laparoscopic surgery for both morbidity [OR 0.71 (95% CI 0.34-1.48)] and recurrence rate [OR 0.56 (95% CI 0.18-1.75)]. Operative time was longer in the robotic group with a MWD of 22.88 minutes (CI 5.73-40.04, p < 0.0007). There was a statistically significant reduction in length of stay with robotic surgery [mean difference - 0.36 days (95% CI - 0.66 to - 0.07)]. CONCLUSIONS: This systematic review shows that robotic-assisted ventral rectopexy requires longer operative time with no significant added benefit over laparoscopic ventral rectopexy. The conversion rate was low in both groups and the trends to benefit did not reach statistical significance. More studies are required to clarify whether the potential technical advantage of robotic surgery in ventral rectopexy translates to an improvement in clinical outcome.

Trauma Response Nurse: Bringing Critical Care Experience and Continuity to Early Trauma Care.

Multitrauma patients can benefit significantly from specialized care. Prior to mid-2016, this hospital's trauma team did not include a surgical intensive care unit (SICU) nurse. As the value of bringing this expertise to the patient upon arrival was realized, the role of the trauma response nurse (TRN) was developed. The TRN role was designed to provide a dedicated SICU nurse to care for trauma patients from emergency department (ED) arrival through disposition. The integration of the TRN role into the trauma team sought to improve quality and safety, as well as communication and collaboration, and enhance continuity of care. The primary responsibilities of the TRN were to assist with clinical interventions, transport patients fromthe ED to tests and procedures, and assume care through disposition. Additional TRN duties included education, community outreach, and performance improvement. TRNs now respond to all trauma activations that occur on weekday day shift. This role has improved collaboration between nursing disciplines, improved the overall function of the trauma team, and enhanced the safety of trauma patients during transport. TRNs make valuable contributions to the education and outreach missions of the trauma program and ensure that patients are receiving the highest level of trauma care.

Gendered Social Institutions and Preventive Healthcare Seeking for Black Men Who Have Sex with Men: The Promise of Biomedical HIV Prevention.

Research on gender and health, including research conducted among Black men who have sex with men (BMSM), has primarily focused on how gender norms and roles shape healthcare engagement. Here we advance that work by demonstrating how a broader theorization of gender, particularly one that moves beyond gender norms and performance to incorporate structures such as the healthcare system and the labor market, can facilitate an understanding of how gender affects preventive healthcare seeking among BMSM, particularly the uptake of pre-exposure prophylaxis (PrEP), a promising approach to alleviate HIV disparities. This article is based on a year-long ethnographic study conducted in New York City with BMSM (n = 31; three interviews each) and community stakeholders (n = 17). Two primary findings emerged: (1) the labor market systematically excluded the men in our sample, which limited their ability to access employer-sponsored healthcare. Such discrimination may promote overt demonstrations of masculinity that increase their HIV vulnerability and decrease healthcare seeking, and (2) healthcare systems are not structured to promote preventive healthcare for men, particularly BMSM. In fact, they constrained men's access to primary providers and were usually tailored to women. Applying a structural, gendered lens to men's health-in addition to the more frequently researched individual or interpersonal levels-provides insight into factors that affect healthcare seeking and HIV prevention for BMSM. These findings have implications for the design of policies and institutional reforms that could enhance the impact of PrEP among BMSM. Findings are also relevant to the management of chronic disease among men more broadly.

People with epilepsy obtain added value from education in groups: results of a qualitative study.

BACKGROUND AND PURPOSE: Having epilepsy requires individuals to learn about self-management. So far, trials of self-management courses have not included in-depth qualitative evaluations of how the learning method influences participants' perceptions and behaviour. We aimed to interview participants who had attended a course, as part of a randomized controlled trial, to examine: (i) their perceptions of what they valued and negative aspects of the intervention, and (ii) whether and in what ways they continued to make use of the training. METHODS: Twenty participants were selected within 6 months of undertaking a course from the larger randomized controlled trial conducted in England. Semi-structured interviews were based on a topic guide. RESULTS: Participants' characteristics were representative of the clinical and demographic characteristics of the trial group. Their mean age was 44 years, half were male, and three-quarters had had epilepsy for over 10 years and had experienced one or more seizures in the previous month. Participants valued the opportunity to meet 'people like them'. Structured learning methods encouraged them to share and compare feelings and experience. Specific benefits included: overcoming the sense of 'being alone' and improving self-acceptance through meeting people with similar experience. Over half reported that this, and comparison of attitudes and experience, helped them to improve their confidence to talk openly, and make changes in health behaviours. CONCLUSIONS: People feel socially isolated in long-term poorly controlled epilepsy. They gain confidence and self-acceptance from interactive groups. Expert-facilitated courses that encourage experiential learning can help people learn from each other, and this may enhance self-efficacy and behaviour change.

Transitioning HIV-infected adolescents to adult care at 14 clinics across the United States: using adolescent and adult providers' insights to create multi-level solutions to address transition barriers.

HIV-infected adolescents have disproportionately low rates of care retention and viral suppression. Approximately half disengage from care while transitioning to adult clinics, in part due to fragmented care systems and lack of streamlined protocols. We conducted 58 qualitative interviews with social service and health care providers across 14 Adolescent Trials Network clinics (n = 28) and 20 adult clinics that receive transitioning adolescents (n = 30) from August 2015-June 2016. We used the constant comparative approach to examine processes, barriers, and facilitators of adult care transition. Transition barriers coalesced around three levels. Structural: insurance eligibility, transportation, and HIV-related stigma; Clinical: inter-clinic communication, differences in care cultures, and resource/personnel limitations; and Individual: adolescents' transition readiness and developmental capacity. Staff-initiated solutions (e.g., grant-funded transportation) were often unsustainable and applied individual-level solutions to structural-level barriers. Comprehensive initiatives, which develop collaborative policies and protocols that support providers' ability to match the solution and barrier level (i.e., structural-to-structural), are sorely needed. These initiatives should also support local systematic planning to facilitate inter-clinic structures and communication. Such approaches will help HIV-infected adolescents transition to adult care and improve long-term health outcomes.

Religious coping in patients with severe substance use disorders receiving acute inpatient detoxification.

BACKGROUND AND OBJECTIVES: Religious coping, one of the most widely studied components of spirituality among psychiatric populations, has rarely been addressed in patients with severe substance use disorders (SUD). The aim of our study was to elucidate whether religious coping is related to symptom expression and mutual-help participation. METHODS: Self-reported religious coping was assessed in individuals sequentially admitted to a private psychiatric hospital for inpatient detoxification. Target symptoms of SUD included severity of substance use prior to admission and craving during detoxification. Three hundred thirty-one patients (68.6% male) participated in the survey; mean age was 38.0 years, and primary presenting diagnosis was most commonly alcohol use disorder (n = 202; 61%), followed by opioid use disorder (n = 119; 36%). RESULTS: Positive religious coping was associated with significantly greater mutual-help participation, fewer days of drug use prior to admission, and was modestly, yet significantly associated with lower drug craving. Negative religious coping was associated with lower confidence in the ability to remain abstinent post-discharge and higher drug craving. CONCLUSIONS: Consistent with hypotheses, greater positive religious coping was associated with greater mutual-help participation, lower severity of pre-admission drug use, and lower substance craving during detoxification. Use of positive religious coping may modify the course of SUD recovery by promoting engagement in mutual-help activities. SCIENTIFIC SIGNIFICANCE: The findings of this study suggest that positive and negative religious coping are linked with several key SUD recovery variables. Further research to replicate this finding and to assess mechanisms within this potential association is warranted. (Am J Addict 2017;26:744-750).

Ethical and Psychosocial Considerations in Informing HIV-Exposed Uninfected Children That They Were Exposed to HIV and Antiretroviral Medications In Utero.

We build on what is known about the potential long-term health effects of perinatal antiretroviral medication exposure to examine ethical and psychosocial issues associated with disclosure by applying lessons from other health conditions, theories of child and adolescent development and rights, and the relevant literature and legal contexts. We present 2 cases to highlight potential issues; apply a bioethical framework that includes principles of autonomy, beneficence, nonmaleficence, and justice; and explore other factors, including the current uncertainty about these exposures' possible long-term health risks. This ethical framework can help clinicians and researchers consider and balance relevant concerns in deciding whether to inform offspring of HIV and related exposures.

Early Magnesium Treatment After Aneurysmal Subarachnoid Hemorrhage: Individual Patient Data Meta-Analysis.

BACKGROUND AND PURPOSE: Delayed cerebral ischemia (DCI) is an important cause of poor outcome after aneurysmal subarachnoid hemorrhage (SAH). Trials of magnesium treatment starting <4 days after symptom onset found no effect on poor outcome or DCI in SAH. Earlier installment of treatment might be more effective, but individual trials had not enough power for such a subanalysis. We performed an individual patient data meta-analysis to study whether magnesium is effective when given within different time frames within 24 hours after the SAH. METHODS: Patients were divided into categories according to the delay between symptom onset and start of the study medication: <6, 6 to 12, 12 to 24, and >24 hours. We calculated adjusted risk ratios with corresponding 95% confidence intervals for magnesium versus placebo treatment for poor outcome and DCI. RESULTS: We included 5 trials totaling 1981 patients; 83 patients started treatment<6 hours. For poor outcome, the adjusted risk ratios of magnesium treatment for start <6 hours were 1.44 (95% confidence interval, 0.83-2.51); for 6 to 12 hours 1.03 (0.65-1.63), for 12 to 24 hours 0.84 (0.65-1.09), and for >24 hours 1.06 (0.87-1.31), and for DCI, <6 hours 1.76 (0.68-4.58), for 6 to 12 hours 2.09 (0.99-4.39), for 12 to 24 hours 0.80 (0.56-1.16), and for >24 hours 1.08 (0.88-1.32). CONCLUSIONS: This meta-analysis suggests no beneficial effect of magnesium treatment on poor outcome or DCI when started early after SAH onset. Although the number of patients was small and a beneficial effect cannot be definitively excluded, we found no justification for a new trial with early magnesium treatment after SAH.

Factors affecting linkage to care and engagement in care for newly diagnosed HIV-positive adolescents within fifteen adolescent medicine clinics in the United States.

Early linkage to care and engagement in care are critical for initiation of medical interventions. However, over 50 % of newly diagnosed persons do not receive HIV-related care within 6 months of diagnosis. We evaluated a linkage to care and engagement in care initiative for HIV-positive adolescents in 15 U.S.-based clinics. Structural and client-level factors (e.g. demographic and behavioral characteristics, clinic staff and location) were evaluated as predictors of successful linkage and engagement. Within 32 months, 1,172/1,679 (69.8 %) of adolescents were linked to care of which 1,043/1,172 (89 %) were engaged in care. Only 62.1 % (1,043/1,679) of adolescents were linked and engaged in care. Linkage to care failure was attributed to adolescent, provider, and clinic-specific factors. Many adolescents provided incomplete data during the linkage process or failed to attend appointments, both associated with failure to linkage to care. Additional improvements in HIV care will require creative approaches to coordinated data sharing, as well as continued outreach services to support newly diagnosed adolescents.

"Youth friendly" clinics: considerations for linking and engaging HIV-infected adolescents into care.

Linkage and engagement in care are critical corollaries to the health of HIV-infected adolescents. The adolescent HIV epidemic and adolescents' unique barriers to care necessitates innovation in the provision of care, including the consideration of the clinical experience. Little research has addressed how "youth friendly" clinics may influence care retention for HIV-infected youth. We conducted 124 interviews with providers, outreach workers, and case managers, at 15 Adolescent Medicine Trials Network clinics. Photographs of each clinic documented the characteristics of the physical space. Constant comparison and content and visual narrative methods were utilized for data analysis. Three elements of youth friendliness were identified for clinics serving HIV-infected youth, including: (1) role of target population (e.g., pediatric, adolescent, HIV); (2) clinics' physical environment; and (3) clinics' social environment. Working to create 'youth friendly' clinics through changes in physical (e.g., space, entertainment, and educational materials) and social (e.g., staff training related to development, gender, sexual orientation) environments may help reduce HIV-infected adolescents' unique barriers to care engagement. The integration of clinic design and staff training within the organization of a clinical program is helpful in meeting the specialized needs of HIV-infected youth.

Patient Education and Decision Support for Long-Acting Injectable HIV Antiretroviral Therapy: Protocol for Tool Development and Pilot Testing with Ryan White HIV/AIDS Program Medical Case Management Programs in New York.

BACKGROUND: Long-acting injectable (LAI) HIV antiretroviral therapy (ART) presents a major opportunity to facilitate and sustain HIV viral suppression, thus improving health and survival among people living with HIV and reducing the risk of onward transmission. However, realizing the public health potential of LAI ART requires reaching patients who face barriers to daily oral ART adherence and thus can clinically benefit from alternative treatment modalities. Ryan White HIV/AIDS Program Part A medical case management (MCM) programs provide an array of services to address barriers to HIV care and treatment among economically and socially marginalized people living with HIV. These programs have demonstrated effectiveness in improving engagement along the continuum of care, but findings of limited program impact on durable viral suppression highlight the need to further innovate and hone strategies to support long-term ART adherence. OBJECTIVE: This study aims to adapt and expand Ryan White MCM service strategies to integrate LAI ART regimen options, with the larger goal of improving health outcomes in the populations that could most benefit from alternatives to daily oral ART regimens. METHODS: In 3 phases of work involving patient and provider participants, this study uses role-specific focus groups to elicit perceptions of LAI versus daily oral ART; discrete choice experiment (DCE) surveys to quantify preferences for different ART delivery options and related supports; and a nonrandomized trial to assess the implementation and utility of newly developed tools at 6 partnering Ryan White HIV/AIDS Program Part A MCM programs based in urban, suburban, and semirural areas of New York. Findings from the focus groups and DCEs, as well as feedback from advisory board meetings, informed the design and selection of the tools: a patient-facing, 2-page fact sheet, including frequently asked questions and a side-by-side comparison of LAI with daily oral ART; a patient-facing informational video available on YouTube (Google Inc); and a patient-provider decision aid. Implementation outcomes, measured through provider interviews, surveys, and service reporting, will guide further specification of strategies to integrate LAI ART options into MCM program workflows. RESULTS: The study was funded in late April 2021 and received approval from the institutional review board in May 2021 under protocol 20-096. Focus groups were conducted in late 2021 (n=21), DCEs ran from June 2022 to January 2023 (n=378), and tools for piloting were developed by May 2023. The trial (May 2023 through January 2024) has enrolled >200 patients. CONCLUSIONS: This study is designed to provide evidence regarding the acceptability, feasibility, appropriateness, and utility of a package of patient-oriented tools for comparing and deciding between LAI ART and daily oral ART options. Study strengths include formative work to guide tool development, a mixed methods approach, and the testing of tools in real-world safety-net service settings. TRIAL REGISTRATION: Clinicaltrials.gov NCT05833542; https://clinicaltrials.gov/study/NCT05833542. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56892.

The Community is the Cure: How African American Washington, DC Residents Informed Opioid Treatment Engagement.

BACKGROUND: Recent data indicate rising opioid overdose deaths among African American residents of Washington, DC. OBJECTIVES: We highlight a community-informed approach to assessing attitudes toward opioid use disorder treatment among DC residents (February 2019 to March 2020). METHODS: A listening tour with trusted community leaders led to the formation of a Community Advisory Board (CAB). When the COVID-19 pandemic commenced in March 2020, community dialogues became exclusively virtual. The CAB partnered with academic leaders to co-create project mission and values and center the community's concerns related to opioid use and its causes, treatment structure, and facilitators of effective engagement. RESULTS: Interview guides were created for the engagement of community members, using values highlighted by the CAB. The CAB underscored that in addition to opioid problems, effective engagement must address community experience, collective strengths/resilience, and the role of indigenous leadership. CONCLUSIONS: Engaging community prior to project implementation and maintaining alignment with community values facilitated opioid use disorder assessments. Community-informed assessments may be critical to building community trust.

Promise, perils and cautious optimism: the next frontier in long-acting modalities for the treatment and prevention of HIV.

PURPOSE OF REVIEW: This paper provides a critical review of recent therapeutic advances in long-acting (LA) modalities for human immunodeficiency virus (HIV) treatment and prevention. RECENT FINDINGS: LA injectable antiretroviral therapy (ART) has been approved in the United States, Canada and Europe; the United States also has approved LA injectable preexposure prophylaxis (PrEP) and the World Health Organization has recommended the vaginal PrEP ring. Current LA PrEP modalities in clinical trials include injections, films, rings, and implants; LA ART modalities in trials include subcutaneous injections and long-term oral pills. Although LA modalities hold incredible promise, global availability is inhibited by long-standing multilevel perils including declining multilateral funding, patent protections and lack of political will. Once available, access and uptake are limited by factors such as insurance coverage, clinic access, labor markets, stigma, and structural racism and sexism. These must be addressed to facilitate equitable access for all. SUMMARY: There have been tremendous recent advances in the efficacy of LA ART and PrEP modalities, providing renewed hope that 'ending the HIV epidemic' is within reach. However, pervasive socio-structural inequities limit the promise of LA modalities, highlighting the need for cautious optimism in light of the embedded inequities in the trajectory of research, development, and population-level implementation.