BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study.

Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.

Predisposing, Enabling, and Need Factors Associated with Psychotropic Medication and Mental Health Service Use among Children in Out-of-Home Care in the United States: A Scoping Review.

This scoping review aimed to identify predisposing, enabling, and need factors associated with the use of mental health services, including psychotropic medications, among children in out-of-home care in the United States. We searched the PsycInfo, SocINDEX, Medline, and Scopus databases, and 22 studies met inclusion criteria and were systematically analyzed. Among the included studies, 7 studies examined predictors associated with taking psychotropic medications, and 16 examined factors associated with using other mental health services. Significant predisposing, enabling, and need factors associated with greater use of mental health services, including psychotropic medications, were identified. The most frequently identified predisposing factors were child race/ethnicity, age, gender, and maltreatment. Important enabling factors were out-of-home placement type and length of care, and need factors included children's mental/behavioral problems. The results provide insight into maximizing factors facilitating children's use of mental health services to address mental health problems of children in out-of-home care. Further, the results imply the importance of the appropriate use of psychotropic medication (e.g., the type and dosage of medications) among children in out-of-home care. The identified factors can inform child welfare agencies and stakeholders on ways to improve access to mental health services and the appropriate use of psychotropic medications among children in out-of-home care in the United States.

Protocol for a systematic review of substance use and misuse prevalence and associated factors among transgender and non-binary youth living in the USA.

BACKGROUND: Transgender and gender non-binary (TNB) youth living in the USA report elevated levels of substance use compared with their cisgender counterparts, with previous literature pointing to minority stressors as some of the factors that could facilitate such elevated levels. Yet, substance use and misuse prevalence and associated modifiable factors among TNB youth are not fully known. The current paper details the protocol for a systematic review aimed at (1) identifying substance use and misuse prevalence among TNB youth (ages <25) and related demographic disparities (based on racial, ethnic and gender identity, and sexual orientation), (2) examining factors associated with substance use and misuse among TNB youth and (3) examining protective factors against substance use and misuse among TNB youth. METHODS AND ANALYSIS: Systematic searches will be conducted across four databases: PubMed, LGBTQ+ Source, CINAHL and PsycInfo to identify quantitative, qualitative and mixed-methods peer-reviewed research publications. An exhaustive list of keywords and corresponding MeSH (Medical Subject Headings) terms representing the concepts of 'TNB' (the population of interest) and 'substance use and misuse' (outcome) will be employed. Identified records will be initially screened via a review of titles and abstracts. Full text of the remaining records will be reviewed corresponding to the inclusion and exclusion criteria. Extracted data will be synthesised in table and narrative format. A meta-analysis will be considered contingent on the existence of sufficient data. Methodological quality and risk of bias of studies will be assessed. ETHICS AND DISSEMINATION: This review does not require approval from the Institutional Review Board as it involves no interactions with human subjects. We will disseminate our findings via peer-reviewed manuscripts and academic conference presentations. PROSPERO REGISTRATION NUMBER: CRD42023394985.

A systematic review of specialty dementia care units in long-term care settings.

BACKGROUND: Alzheimer's disease and related dementias (ADRD) are common among nursing home residents. Yet, conclusive evidence regarding best care practices among this population is lacking. Objectives of this systematic review were to explore features of dementia specialty care units (DSCUs) in long-term care settings and examine benefits for residents, staff, families, and facilities. METHODS: PubMed, CINAHL, and PsychINFO were searched to identify articles involving DSCUs in long-term care settings published in English with full text available between 01.01.2008 and 06.03.2022. Articles containing empirical data about ADRD special care in long-term care settings were included in the review. Articles focused on clinic-based or out-patient dementia care programs (e.g., adult day care) were excluded. Articles were categorized based on geography (U.S. vs. international) and study design: interventions, descriptive studies, or comparison studies (traditional vs. specialty ADRD care). RESULTS: Our review included 38 U.S. articles and 54 articles from 15 international countries. In the U.S., 12 intervention, 13 descriptive, and 13 comparison studies met the inclusion criteria. Articles from international countries included 22 intervention, 20 descriptive, and 12 comparison studies. Results were mixed in terms of the efficacy of DSCUs. Promising DSCU features include small-scale settings, dementia-educated staff, and multidisciplinary approaches to care. CONCLUSION: Overall, our review did not find conclusive evidence regarding the benefits of DSCUs in long-term care settings. No rigorous study designs were found examining 'special' features of DSCUs and associations with outcomes among residents, family, staff, and the facility. Randomized clinical trials are needed to disentangle the 'special' features of DSCUs.

Mobile integrated health-community paramedicine programs' effect on emergency department visits: An exploratory meta-analysis.

INTRODUCTION: Mobile Integrated Health Community Paramedicine (MIH-CP) programs are designed to increase access to care and reduce Emergency Department (ED) and Emergency Medical Services (EMS) usage. Previous MIH-CP systematic reviews reported varied interventions, effect sizes, and a high prevalence of biased methods. We aimed to perform a meta-analysis on MIH-CP effect on ED visits, and to evaluate study designs' effect on reported effect sizes. We hypothesized biased methods would produce larger reported effect sizes. METHODS: We searched Pubmed, Embase, CINAHL, and Scopus databases for peer-reviewed MIH-CP literature from January 1, 2000, to July 24, 2021. We included all full-text English studies whose program met the National Associations of Emergency Medical Technicians definition, reported ED visits, and had an MIH-CP related intervention and outcome. We established risk ratios for each included study through interpreting the reported data. We performed a random-effects and cumulative meta-analysis of ED visit data, tests of heterogeneity, and a moderator analysis to assess for factors influencing the magnitude of observed effect. RESULTS: We identified 16 studies that reported ED visit data and included 12 in our meta-analysis. All studies were observational; 3 used matched controls, 6 pre-post controls, and 3 without controls. 7 studies' intervention were diversion/triage while 5 studies intervened with health education/home primary care services. Pooled risk ratio for our data set was 0.56 (95% confidence interval 0.42-0.74). Cumulative meta-analysis revealed that as of 2018 MIH-CP programs began to show consistent reductions in ED visits. Significant heterogeneity was seen among studies, with I-squared >90%. Moderator analysis showed reduced heterogeneity for matched-control studies. CONCLUSION: Our data revealed MIH-CP programs were associated with a reduced risk of ED visits. Study design did not have a statistically significant influence on effect size, though it did influence heterogeneity. We would recommend future studies continue to use high levels of control to produce reliable data with lower heterogeneity.

A Systematic Review of Methodologies and Outcome Measures of Mobile Integrated Health-Community Paramedicine Programs.

INTRODUCTION: Mobile integrated health-community paramedicine (MIH-CP) uses patient-centered, mobile resources in the out-of-hospital environment to increase access to care and reduce unnecessary emergency department (ED) usage. The objective of this systematic review is to characterize the outcomes and methodologies used by MIH-CP programs around the world and assess the validity of the ways programs evaluate their effectiveness. METHODS: The PubMed, Embase, CINAHL, and Scopus databases were searched for peer-reviewed literature related to MIH-CP programs. We included all full-length studies whose programs met the National Association of Emergency Medical Technicians definition, had MIH-CP-related interventions, and measured outcomes. We excluded all non-English papers, abstract-only, and incomplete studies. RESULTS: Our initial literature review identified 6434 titles. We screened 178 full-text studies to assess for eligibility and identified 33 studies to include in this review. These 33 include four randomized controlled trials, 17 cohort studies, eight 8 case series, and four 4 cross-sectional studies. Of the 29 non-randomized trials, five used matched controls, 13 used pre-post, and 11 used no controls. Outcomes measured were hospital usage (24 studies), ED visits (15), EMS usage (23), patient satisfaction (8), health-related outcomes (8), and cost (9). Studies that evaluated hospital usage reported one of several outcome measures: hospital admissions (11), ED length of stay (3), and hospital readmission rate (2). EMS usage was measured by ambulance transports (12) and EMS calls (10). Cost outcomes observed were ambulance transport savings (7), ED visit savings (4), hospital admission savings (3), and cost per quality-adjusted life year (2). CONCLUSION: Most studies assessing MIH-CP programs reported success of their interventions. However, significant heterogeneity of outcome measures and varying quality of study methodologies exist among studies. Future studies designed with adequately matched controls and applying uniform core metrics for cost savings and health care usage are needed to better evaluate the effectiveness of MIH-CP programs.

A systematic review of research on augmentative and alternative communication brain-computer interface systems for individuals with disabilities.

Augmentative and alternative communication brain-computer interface (AAC-BCI) systems are intended to offer communication access to people with severe speech and physical impairment (SSPI) without requiring volitional movement. As the field moves toward clinical implementation of AAC-BCI systems, research involving participants with SSPI is essential. Research has demonstrated variability in AAC-BCI system performance across users, and mixed results for comparisons of performance for users with and without disabilities. The aims of this systematic review were to (1) describe study, system, and participant characteristics reported in BCI research, (2) summarize the communication task performance of participants with disabilities using AAC-BCI systems, and (3) explore any differences in performance for participants with and without disabilities. Electronic databases were searched in May, 2018, and March, 2021, identifying 6065 records, of which 73 met inclusion criteria. Non-experimental study designs were common and sample sizes were typically small, with approximately half of studies involving five or fewer participants with disabilities. There was considerable variability in participant characteristics, and in how those characteristics were reported. Over 60% of studies reported an average selection accuracy ≤70% for participants with disabilities in at least one tested condition. However, some studies excluded participants who did not reach a specific system performance criterion, and others did not state whether any participants were excluded based on performance. Twenty-nine studies included participants both with and without disabilities, but few reported statistical analyses comparing performance between the two groups. Results suggest that AAC-BCI systems show promise for supporting communication for people with SSPI, but they remain ineffective for some individuals. The lack of standards in reporting outcome measures makes it difficult to synthesize data across studies. Further research is needed to demonstrate efficacy of AAC-BCI systems for people who experience SSPI of varying etiologies and severity levels, and these individuals should be included in system design and testing. Consensus in terminology and consistent participant, protocol, and performance description will facilitate the exploration of user and system characteristics that positively or negatively affect AAC-BCI use, and support innovations that will make this technology more useful to a broader group of people. Clinical trial registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018095345, PROSPERO: CRD42018095345.

Parental experiences raising children with autism spectrum disorder in Eastern Europe: a scoping review.

Parents of children with autism spectrum disorder (ASD) are often at greater risk of experiencing stress and lower quality of life, in comparison to parents of typically developing (TD) children and other developmental disabilities. Despite vast literature on parental experiences in Western countries, little is known about this topic in Eastern Europe. Thus, we aimed to map studies that addressed parental experiences of children with ASD in Eastern Europe using the Double ABCX theoretical framework. The Double ABCX Model of family adaptation describes how families responds to stressors over time, based on the intercorrelation of available resources, coping mechanisms and appraisal of stressors. Following a scoping review methodological framework, we conducted a comprehensive search of three databases. We ultimately included 15 peer-reviewed studies in the review. Within each study, we examined Double ABCX Model factors. The studies were conducted in nine Eastern European countries and included parents of children and adults with ASD. Consistent with studies conducted in Western countries, parents of children with ASD expressed more personal and family challenges and greater maladaptation compared to parents of TD children. Moreover, families reported lower satisfaction with quality of life and more health problems. The small number of included papers from nine countries suggests that parental experiences of children with ASD in Eastern Europe are overlooked in the literature. Future research should explore findings from this review that differed from the Western literature, including contributing factors to parental adaption in families in Eastern Europe.

Adverse Childhood Experiences (ACEs), Alcohol Use in Adulthood, and Intimate Partner Violence (IPV) Perpetration by Black Men: A Systematic Review.

Intimate partner violence (IPV) is a serious social and public health problem in the United States. Adverse childhood experiences (ACEs) and alcohol use have been found to be associated with IPV perpetration; however, limited studies have examined the interrelationships of these variables among Black men. This is the first known study to systematically review and synthesize studies on the interrelationships of ACEs, alcohol use, and IPV perpetration among Black men. Comprehensive literature searches were conducted in PubMed and six EBSCOhost databases by a research librarian and two researchers. Twenty studies met inclusion criteria: empirical; available in English; included ACEs, alcohol use/substance abuse, and IPV perpetration variables in the analyses; and samples included Black/African American male IPV perpetrators aged ≥ 18 years. ACEs were found to be associated with IPV perpetration among Black men, but findings were mixed regarding the role of alcohol in relation to ACEs and IPV. Numerous ACE factors (1-6) were used across studies. However, findings regarding the co-occurrence of ACE factors are inconclusive because none of the studies examined the cumulative effects of exposure to more than one type of ACE on subsequent IPV perpetration. Implications for policy, practice, and research related to the interrelationships of ACEs, alcohol use, and IPV perpetration are provided. Future work is needed to better explicate the interrelationships among these constructs.

A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy.

Amidst the concurrent global crises of coronavirus disease 2019 (COVID-19), uprisings against Anti-Black racism and police brutality, as well as anti-Asian racism and violence, the field of medicine found itself simultaneously called upon to respond as essential workers in the public health devastation of COVID-19, and as representatives of healthcare institutions wrought with the impacts of systemic racism. Clinicians, researchers, and advocates in adolescent and young adult (AYA) oncology, must come together in authentic activism to begin the work of creating structural change to advance antiracist approaches to patient engagement in AYA oncology research and advocacy. Critical review of existing practices is needed to ensure that ethical and effective research methods are employed when engaging with racial and ethnic minority AYA patients with cancer, who may be particularly vulnerable and exploited in the current context.

Exploring pulmonary function and physical function in childhood cancer: A systematic review.

BACKGROUND: Children with cancer experience pulmonary and physical function side effects from the cancer itself and the medical interventions. This systematic review examines the known relationship between pulmonary function and physical function in childhood cancer and identifies gaps in the literature. METHODS: A search of Ovid Medline, CINAHL (EbscoHost) and Embase to identify literature from 2009 to March 2020. RESULTS: Fifty-seven studies met inclusion criteria. Thirty-seven studies reported impaired pulmonary function. Incidence of pulmonary dysfunction ranged from 45.5 % to 84.1 %. Eighteen studies reported impaired physical function. Three studies investigated the relationship between pulmonary function and physical function. No studies explored inspiratory muscle strength. CONCLUSION: Pulmonary function and physical function are related and frequently impaired in children during and after cancer treatment. A literature gap was found in diaphragm function and its relationship with physical function. Future studies should focus on interventions that target the pulmonary mechanisms impacting physical function.

A Comprehensive Review of Methods to Measure Oral Oncolytic Dose Intensity Using Retrospective Data.

BACKGROUND: Understanding the real-world use of oral oncolytics is essential to assess drug effectiveness. Retrospective analyses using medical and pharmacy claims data allow observation of drug use patterns and health outcomes. However, studies of medication adherence to oral oncolytics may not be sufficient in characterizing exposure because they typically measure refill frequency, not the administered dose or dose changes. Patients who appear fully adherent by traditional measures may be receiving different doses and experiencing differing effectiveness. Relative dose intensity (RDI) is a measure that has been used for intravenous drugs to capture the amount of a particular chemotherapeutic agent administered per unit of time (dose intensity), expressed as the fraction of the amount recommended in evidence-based guidelines. Such a measure would be useful for real-world studies of comparative effectiveness to characterize patient exposure to oral oncolytics. OBJECTIVE: To identify studies that used administrative claims data to measure real-world oral oncolytic dose intensity, RDI, or similar constructs. METHODS: Two health sciences librarians conducted a literature search (PubMed, January 1, 1809-February 6, 2018) including terms in each of the following concept areas: oncology drugs, dosage, and retrospective data sources. At least 2 reviewers scanned each title and abstract of publications retrieved from PubMed. Abstracts that indicated the study reported dose or related concepts and oral oncolytics using retrospective data sources were marked for full-text review. During full-text review, papers were excluded if they did not study oral oncolytics (i.e., only described intravenous chemotherapy); if they did not report drug dosage; or if the study was not retrospective. Resulting studies were included for full-text data extraction. RESULTS: Of the 1,640 publications returned from the search, 41 were marked for full-text review. Full-text review established that 17 studies addressed a concept related to dose of oral oncolytics using retrospective data. Twenty-four studies were excluded: 11 did not measure dose; 9 did not study oral oncolytics; and 4 were not retrospective studies. Among the 17 articles marked for extraction, 5 articles reported dose intensity or RDI using medical records or electronic health record (EHR) data. CONCLUSIONS: This study reveals not only the need for a claims-based measure of dose intensity for oral oncolytics, but also provides a basis for the development of such a measure based on previous EHR-based studies. While several claims data studies have characterized oral oncolytic dosing and duration, we found that no studies combined these dimensions into a single measure such as dose intensity. Methods using EHR data may be translatable to a claims data study. Future research is needed to develop and validate such measures. DISCLOSURES: Novartis Pharmaceuticals provided funding for this study and is a manufacturer of oral onalytics, which is under study in this article. Arcona and Zacker are employees of Novartis. Slejko reports grants from PhRMA, PhRMA Foundation, and Takeda Pharmaceuticals and consulting fees from Pfizer, outside the submitted work. Stuart reports consulting fees from the University of Maryland during the study. The other authors have nothing to disclose. The preliminary findings of this study were presented in a poster at AMCP Nexus 2018, October 22-25, 2018, in Orlando, FL.

Correction to: A Systematic Review of Community Health Workers' Role in Occupational Safety and Health Research.

The original version of this article unfortunately contained a mistake in the affiliation of co-author Ashley M. Bush.

A Systematic Review of Community Health Workers' Role in Occupational Safety and Health Research.

We systematically reviewed the literature to describe how community health workers (CHWs) are involved in occupational health and safety research and to identify areas for future research and research practice strategies. We searched five electronic databases from July 2015 through July 2016. Inclusion criteria were as follows: (1) study took place in the United States, (2) published as a full peer-review manuscript in English, (3) conducted occupational health and safety research, and (4) CHWs were involved in the research. The majority of 17 included studies took place in the agriculture industry (76%). CHWs were often involved in study implementation/design and research participant contact. Rationale for CHW involvement in research was due to local connections/acceptance, existing knowledge/skills, communication ability, and access to participants. Barriers to CHW involvement in research included competing demands on CHWs, recruitment and training difficulties, problems about research rigor and issues with proper data collection. Involving CHWs in occupational health and safety research has potential for improving inclusion of diverse, vulnerable and geographically isolated populations. Further research is needed to assess the challenges and opportunities of involving CHWs in this research and to develop evidence-based training strategies to teach CHWs to be lay-health researchers.

Occupational exposures and associated risk factors among U.S. casino workers: a narrative review.

We conducted a narrative literature review of U.S. casino occupational health and safety research based on the following inclusion criteria: 1) focused on workers, 2) provided information pertaining to exposures present in the occupational environment (e.g., hazards, stressors, etc.), and 3) pertained to casino, gaming, or gambling workers. Following a multi-step process, a total of 11 articles were identified that related to the occupational health and safety of U.S. casino workers. These articles primarily focused on environmental tobacco smoke (ETS) exposures (n = 7 articles), with the remaining articles related to casino worker risk behaviors (i.e., problem gambling and drinking) (n = 2), and psychosocial stressors (n = 2). Our results demonstrate that the overwhelming consensus in the literature is that ETS leads to high respirable particulate matter (PM2.5), tobacco toxin levels and exposures among gaming employees. Our results also suggest that harassment, low autonomy at work, and unsafe work conditions may be of concern, especially for female workers. We identified major gaps in the casino worker occupational safety literature including a lack of studies that evaluated noise exposure, injury data, ergonomics, psychosocial hazards, or long term respiratory health outcomes related to ETS exposure. Future research regarding the occupational safety and health of U.S. casino workers should address these gaps in the literature.