National Research Network Research Articles

Engaging people with lived experience in a national research network: Experience from the Canadian Consortium on Neurodegeneration in Aging

AbstractEngagement of People with Lived Experience of Dementia (EPLED) was a new cross‐cutting program introduced as part of the Canadian Consortium on Neurodegeneration in Aging (CCNA) for their second 5‐year phase (from 2019 to 2024). The initiative was supported by the Alzheimer Society of Canada as part of their commitment to the CCNA. EPLED had three objectives: (1) support persons with dementia and care partners to be actively involved in the CCNA research process; (2) work with CCNA research Teams, Cross‐cutting Programs and Partners to develop novel mechanisms and formats to further this collaboration; and, (3) advance the methods of patient engagement in research by embedding evaluation. One of the main activities of EPLED was to recruit and support an Advisory Group of people from across Canada with diverse lived experiences of dementia. Since 2020, EPLED Advisory Group members became involved in various CCNA central and research team activities as well as contributing as co‐presenters and co‐authors in academic and non‐academic venues and as co‐applicants and co‐investigators on research grants. Advisory Group members also took on roles advocating for more people living with dementia in research roles. Key factors described for the success of the Advisory Group were developing trusting relationships, providing education, offering support, being flexible and acknowledging tensions between research, practice and lived experience. Ongoing challenges often related to the gap between research and practice and balancing EPLED’s research objectives with aspirations for advocacy and system‐level change. Looking forward to the third phase of the CCNA, key challenges will include: developing capacity to meet increasing research funding expectations of engagement while also ensuring meaningful engagement, engaging new perspectives by recruiting new Advisory Group members while also retaining expertise from existing members, evaluating the impact of engagement and initiating EPLED‐driven research initiatives.

Management of penetrating splenic trauma; is it different to the management of blunt trauma?

We compare the treatment and outcomes of penetrating and blunt splenic trauma at Major Trauma Centres (MTC) within the UK. Data obtained from the national Trauma Audit Research Network database identified all eligible splenic injuries admitted to MTC within England between 01/01/17-31/12/21. Demographics, mechanism of injury, splenic injury classification, associated injuries, treatment, and outcomes were compared. Penetrating injuries accounted for 5.9 % (235/3958) of splenic injuries, compared to blunt at 94.1 % (3723/3958). Most penetrating injuries (91.5 %, 215/235) resulted from stabbing. There was a statistically significant difference in first treatment between penetrating and blunt splenic injuries (p < 0.001), but similar trends between GSW and stab injuries. Most penetrating injuries were managed conservatively (68.9 %,162/235), with 10.6 % (25/235) embolized compared to 13.2 % (491/3723) for blunt splenic injury. More penetrating injuries (20.4 %, 48/235) underwent splenectomy compared to blunt injuries (8.8 %, 326/3723). Those receiving embolization after penetrating trauma had an 8.0 % (2/25) 30-day mortality compared with blunt at 8.6 % (42/491) and compared with 2.1 % (1/48) and 12.3 % (40/326) of those who received splenectomy in the penetrating and blunt groups, respectively. 8 out of the 25 penetrating trauma patients who underwent embolisation (32.0 %) required splenectomy due to embolisation failure compared to 5.3 % (26/491) in the blunt trauma group. A trend is seen towards the use of operative management in penetrating splenic trauma. There is a high splenic embolisation failure rate (32.0 %) in penetrating trauma although mortality for those embolised was similar to the blunt injury group.

Starting early: Case study of mentoring for undergraduate training through the Veterans Health Administration and implications for promoting equity.

Undergraduate mentoring and research internships promote entry into graduate training, academic success, research productivity, and greater career satisfaction. Most pathway programs to enhance representation within academia and health care intervene at the graduate level, leaving a critical gap in undergraduate training. The Veterans Health Administration's (VHA's) national network of clinicians and researchers is uniquely suited to provide equitable access to quality mentorship and education for undergraduates interested in health care careers. We present a program evaluation case study of a VHA undergraduate training program incorporating empirically supported components that promote success and transition to graduate school, including tiered mentorship, a didactic-preceptor model, hands-on experience, and interdisciplinary work. We describe participant characteristics and consider the program elements that may contribute to trainees' success, highlighting the importance of undergraduate training within a health care system like VHA. We found that all program completers attained their bachelor's degree and nearly 70% advanced to graduate studies. Despite some differences based on participant characteristics, all program components were deemed useful preparation for professional success, with hands-on research experience and mentoring cited as the most helpful. The promising results of our case study demonstrate the feasibility of successfully implementing an undergraduate training program to provide a pathway to advanced careers in health care within the VHA. We posit that programs like ours can serve as a framework for creating pathway training programs that target undergraduates traditionally underrepresented, subsequently empowering them to pursue health care careers, and ultimately increasing diversity by training professionals who are better prepared to assist with diverse patient needs. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

19 How are paediatric tertiary care hospitals structured to respond to the needs of children with medical complexity during acute deteriorations? A landscape study in Canada

Abstract Background Children with medical complexity (CMC) are at risk of unplanned healthcare visits especially due to acute clinical deteriorations. Complex care (CC) programs help facilitate the needs of CMC. Objectives To identify the organizational and administrative resources available for the care of CMC in Canadian tertiary care paediatric hospitals and to assess how physicians believe these resources are adapted to the specific urgent needs of CMC. Design/Methods In this observational study, key informants representing complex care (CC) and paediatric emergency medicine (PEM) services from 15 paediatric tertiary care hospitals in Canada completed cross-sectional structured questionnaires. Participants were identified through national research networks (Pediatric Emergency Research Canada (PERC), Pediatric Inpatient Research Network (PIRN) and by snowball sampling. Utilizing the Lime Survey web application, two questionnaires (one for PEM, one for CC) were develop based on a literature review and following Burns methodology. Verbal questionnaires were administered via a secured teleconference application or completed digitally. Descriptive data were generated using Excel and SPSS v.29. Results From 09/2022 to 09/2023, 93% (28/30) key informants completed questionnaires (15 PEM, 13 CC, Table 1). Across the 15 sites, 12 had a CC program or clinic. Information about established CC programs was available for 10 sites (Table 2), from participating CC informants: 4/10 offered outpatient services; 6/10 offered inpatient and outpatient services; 8/10 offered last minute appointments for CMC. CC programs had variable staffing: mostly physicians (median 3 FTE, range: 0.2-6) and nurse practitioners (0.75 FTE, range: 0-9) or registered nurses (0.9 FTE, 0-8). CC informants reported offering an ED consultation service at 8/10 sites, while 6/12 PEM participants reported access to such a service. CC informants reported that their program rarely offered consultations during weekends (2/10) or nights (1/10). Across all sites, PEM informants reported good access to documents to help with continuity of care including emergency care plans (13/15), medical history (14/15), goals of care (13/15). Using an 11-point scale, CC informants rated their hospital’s median ability to meet the outpatient needs of CMC as 6.5 (range: 0-10), and their ED’s median ability to meet the needs of CMC as 7 (range 5-10). PEM informants reported their median ability to meet the needs of CMC as 8 (range 6-9). Informants made suggestions to improve the ED care of CMC (Table 3). Conclusion There exists wide variation in the structures caring for CMC and their availability in case of acute needs. National collaboration between CC and PEM teams may facilitate the design of programs to improve the acute outpatient care of CMC.

The Odyssey of HOMER: Comparative Effectiveness Research on Medication for Opioid Use Disorder During the COVID-19 Pandemic.

The usual challenges of conducting primary care research, including randomized trials, have been exacerbated, and new ones identified, during the COVID-19 pandemic. HOMER (Home versus Office for Medication Enhanced Recovery; subsequently, Comparing Home, Office, and Telehealth Induction for Medication Enhanced Recovery) is a pragmatic, comparative-effectiveness research trial that aims to answer a key question from patients and clinicians: What is the best setting in which to start treatment with buprenorphine for opioid use disorder for this patient at this time? In this article, we describe the difficult journey to find the answer. The HOMER study began as a randomized trial comparing treatment outcomes in patients starting treatment with buprenorphine via induction at home (unobserved) vs in the office (observed, synchronous). The study aimed to enroll 1,000 participants from 100 diverse primary care practices associated with the State Networks of Colorado Ambulatory Practices and Partners and the American Academy of Family Physicians National Research Network. The research team faced unexpected challenges related to the COVID-19 pandemic and dramatic changes in the opioid epidemic. These challenges required changes to the study design, protocol, recruitment intensity, and funding conversations, as well as patience. As this is a participatory research study, we sought, documented, and responded to practice and patient requests for adaptations. Changes included adding a third study arm using telehealth induction (observed via telephone or video, synchronous) and switching to a comprehensive cohort design to answer meaningful patient-centered research questions. Using a narrative approach based on the Greek myth of Homer, we describe here the challenges and adaptations that have provided the opportunity for HOMER to thrive and find the way home. These clinical trial strategies may apply to other studies faced with similar cultural and extreme circumstances.

Preventive Service Usage and New Chronic Disease Diagnoses: Using PCORnet Data to Identify Emerging Trends, United States, 2018-2022.

Data modernization efforts to strengthen surveillance capacity could help assess trends in use of preventive services and diagnoses of new chronic disease during the COVID-19 pandemic, which broadly disrupted health care access. This cross-sectional study examined electronic health record data from US adults aged 21 to 79 years in a large national research network (PCORnet), to describe use of 8 preventive health services (N = 30,783,825 patients) and new diagnoses of 9 chronic diseases (N = 31,588,222 patients) during 2018 through 2022. Joinpoint regression assessed significant trends, and health debt was calculated comparing 2020 through 2022 volume to prepandemic (2018 and 2019) levels. From 2018 to 2022, use of some preventive services increased (hemoglobin A1c and lung computed tomography, both P < .05), others remained consistent (lipid testing, wellness visits, mammograms, Papanicolaou tests or human papillomavirus tests, stool-based screening), and colonoscopies or sigmoidoscopies declined (P < .01). Annual new chronic disease diagnoses were mostly stable (6% hypertension; 4% to 5% cholesterol; 4% diabetes; 1% colonic adenoma; 0.1% colorectal cancer; among women, 0.5% breast cancer), although some declined (lung cancer, cervical intraepithelial neoplasia or carcinoma in situ, cervical cancer, all P < .05). The pandemic resulted in health debt, because use of most preventive services and new diagnoses of chronic disease were less than expected during 2020; these partially rebounded in subsequent years. Colorectal screening and colonic adenoma detection by age group aligned with screening recommendation age changes during this period. Among over 30 million patients receiving care during 2018 through 2022, use of preventive services and new diagnoses of chronic disease declined in 2020 and then rebounded, with some remaining health debt. These data highlight opportunities to augment traditional surveillance with EHR-based data.

Approaches to engaging participants in a national cancer genomics research network.

11022 Background: Although patient engagement is thought to improve the relevance and acceptability of research across diverse patient populations, a paucity of studies actively evaluate engagement activities to assess their impact. The NCI’s Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network was established to advance cancer genomics for understudied cancers and among underserved populations by engaging patients and survivors as participants in research. We sought to characterize strategies for engaging and evaluating engagement among research centers within PE-CGS, and to describe factors impacting each center’s unique engagement strategies and evaluation methods. Methods: We used a multi-method approach to document centers’ engagement strategies and methods to evaluate engagement.We first completed a document review of centers’ study materials including protocols, specific aims, and publicly available information. We then conducted semi-structured key informant interviews with research center members to validate findings from the document review and to identify factors that influenced engagement strategies. The semi-structured interview guide was developed using the Health Equity Implementation Framework to ensure that we accounted for multi-level factors (societal, contextual, and clinical factors) relevant to engagement. Engagement strategies and evaluation methods were collated and analyzed descriptively. Information about factors that influenced their engagement strategies were analyzed using deductive thematic analysis. Results: Across the five PE-CGS research centers, we identified 9 engagement strategies including: convening at network meetings (n=5), use of advisory boards (n=5), brochures (n=3), newsletters (n=2), community outreach through advocacy organizations (n=1) and in-person events (n=2), and use of branded websites (n=4), social media (n=3), and health technology apps (n=1). Methods used for evaluating engagement included: surveys (n=4), interviews/focus groups (n=4), informal feedback from participants (n=2), randomized experiments (n=1), and N-of-1 studies (n=1). Multi-level factors that influenced engagement included those related to the language and culture of the patient population, availability of validated measures, timing of interactions with participants within their health journey, and patient burden imposed by the experienced cancer. Conclusions: Across a national research network with a priority to advance participant engagement in cancer genomics research, we observed a range of unique engagement strategies and evaluation methods. Notably evaluation approaches were not typically tied to specific engagement strategies, but rather sought to evaluate broader aspects of engagement in the respective research studies, such as their ability to engender inclusivity, collaboration, and trust among participants.

Describing primary care patterns before and during the COVID-19 pandemic across Canada: a quasi-experimental pre–post design cohort study using national practice-based research network data

ObjectiveThe objective was to analyse how the pandemic affected primary care access and comprehensiveness in chronic disease management by comparing primary care patterns before and during the early COVID-19 pandemic.DesignWe...

Using interRAI Assessment for Research: Developing a National Research Agenda in Aotearoa New Zealand

interRAI provides a suite of standardized, validated instruments used to assess health and psychosocial well-being, and to inform person-centered care planning. Data obtained from these standardized tools can also be used at a population level for research and to inform policy, and interRAI is currently used in more than 40 countries globally. We present a brief overview of the use of interRAI internationally within research and policy settings, and then introduce how interRAI is used within the universal public health system in Aotearoa New Zealand (NZ), including considerations relating to Māori, the Indigenous people of NZ. In NZ, improvement in interRAI data utilization for research purposes was called for from aged care, health providers, and researchers, to better use these data for quality improvement and health advancement for New Zealanders. A national research network has been established, providing a medium for researchers to form relationships and collaborate on interRAI research with a goal of translating routinely collected interRAI data to improve clinical care, patient experience, service development, and quality improvement. In 2023, the network members met (hybrid: in-person and online) and identified research priorities. These were collated and developed into a national interRAI research agenda by the NZ interRAI Research Network Working Group. Research priorities included reviewing the interRAI assessment processes, improving methods for data linkage to national data sets, exploring how Indigenous Data Sovereignty can be upheld, as well as a variety of clinically focused research topics. Implications for Practice, Policy, and Research: This appears to be the first time national interRAI research priorities have been formally identified. Priorities identified have the potential to inform quality and clinical improvement activities and are likely of international relevance. The methodology described to cocreate the research priorities will also be of wider significance for those looking to do so in other countries.

How do Australian osteopaths manage migraines? Outcomes from a national practice-based research network

BackgroundIndividuals who experience migraines often seek out a variety of treatment options including manual or physical therapy. Evidence suggests that manual therapy, including osteopathy, can play a role in the management of migraines. Whilst there is some literature on the role osteopathy therapy plays in migraine management, none describes the treatment approaches used by practitioners. ObjectivesTo explore the demographic, practice and clinical management characteristics of Australian osteopaths who report treating migraine ‘often’ in clinical practice. MethodsSecondary analysis of a cross-sectional survey of 988 osteopaths from the Osteopathy Research and Innovation Network (ORION), an Australian practice-based research network. Regression analysis was used to identify demographic, practice and clinical management characteristics of Australian osteopaths who reported ‘often’ treating migraine patients. ResultsOver 40% of respondents (n = 400) indicated treating patients with migraines ‘often’. These osteopaths were less likely to be involved in research and be co-located with a dietician compared to osteopaths who do ‘not often’ treat migraine. Osteopaths who reported ‘often’ treating migraine were: five times as likely to treat non-English speaking ethnic groups; 2.5 times as likely to treat chronic pain, temporomandibular joint disorders and hand musculoskeletal complaints; compared to those that do not treat migraines ‘often’. ConclusionAustralian osteopaths who treat migraine are five times more likely to treat non-English speaking ethnic groups; twice as likely to treat chronic pain; temporomandibular joint disorders, and hand musculoskeletal complaints. More research is needed to identify the practices and patient outcomes associated with osteopathy care for those experiencing migraines.

Coherent Raman spectroscopy: Quo vadis?

Although the potential of Coherent Raman Spectroscopy (CRS) in the area of biomedicine, life sciences and material sciences has been well demonstrated, its wide-spread practical application is still rather limited. The two main CRS techniques are Coherent Anti-Stokes Raman Scattering (CARS) and Stimulated Raman Scattering (SRS) spectroscopy or microscopy. Here we present the current state of the art and challenges facing CRS. Although many technological challenges have been addressed to date, showing how to improve resolution, sensitivity and selectivity of CRS, significant efforts are still needed to increase the awareness of these techniques in the academic community, develop reliable protocols, and extend them to practical applications. For this purpose it is also necessary to initiate national and international research networks that can significantly contribute to the development of CRS approaches in areas that have so far made little use of CRS alongside other Raman spectroscopic methods. The purpose of this perspective paper is to present the current state-of-the-art of CRS with a historical background, assess the challenges and present some future development visions.

Risdiplam in Spinal Muscular Atrophy: Safety Profile and Use Through The Early Access to Medicine Scheme for the Paediatric Cohort in Great Britain.

Spinal muscular atrophy (SMA) is a progressive neuromuscular disease caused by mutations in Survival motor neuron 1 (SMN1) gene, leading to reduction in survival motor neuron protein (SMN), key for motor neuron survival and function in the brainstem and spinal cord. Risdiplam is an orally administered SMN2-splicing modifier which increases production of functional SMN protein. Risdiplam was offered in the UK under early access to medicines scheme (EAMS) to SMA type 1 and 2 patients aged 2 months and older, not suitable for authorised treatments from September 2020 to December 2021. To describe the largest paediatric European real-world set of data on patients' characteristics and short-term safety for risdiplam in Great Britain through EAMS. We collated data from SMA REACH UK a national clinical and research network for all patients enrolled onto EAMS and assessed all submitted adverse events. Of the 92 patients; 78% were Type 2 SMA, mean age 10.9 years, range 0-17 years. 56 were treatment naïve, 33 previously treated; of these 25 had received nusinersen, 3 previous treatment unknown. Sixty adverse events (AEs) were reported occurring in 34 patients. The commonest were respiratory tract infections and gastrointestinal disturbance. Four life-threatening events were reported with 2 deaths and permanent cessation of risdiplam in 3 patients.Overall, 38/60 AEs were considered unrelated to risdiplam, 10/60 related to risdiplam and for 12/60 causality not specified. This study found a safety profile similar to clinical trials with no new safety concerns identified. With the restricted eligibility of onasemnogene abeparvovec and complications of nusinersen administration, EAMS allowed access or continued treatment to naïve patients or patients no longer suitable for approved medications. Collection of longitudinal data for this complex population is needed, to provide greater insights into risdiplam's role in addressing patients' needs into the future.

Perinatal outcomes following abdominoplasty: a retrospective study and review of current literature

BackgroundAbdominoplasty surgery is a common body contouring surgery to remove excess fat and skin and restore weakened or separated abdominal muscles caused by aging, pregnancy, or weight fluctuations. There is scant literature regarding patient and pregnancy outcomes following abdominoplasty. We sought to determine if there was a correlation between adverse pregnancy outcomes and a history of abdominoplasty. MethodsWe used a large federated de-identified national health research network with data sourced from 68 health care organizations within the United States (TriNetX, data accessed August 19, 2022). All patients with a record of pregnancy were identified using ICD-10/9 codes and were grouped into those with a history of abdominoplasty and those without. We evaluated the perinatal outcomes of fetal growth restriction, abnormal umbilical artery dopplers, gestational hypertension, pre-eclampsia, preterm delivery, preterm prelabor rupture of membranes, gestational diabetes, macrosomia, stillbirth, abnormal placentation, and wound disruption/infection occurring during a patient's pregnancy following abdominoplasty. Propensity matching was performed to account for potential confounders. An alpha level of < 0.05 was considered statistically significant. ResultsOf the 44,737 patients meeting our criteria, 304 had a history of abdominoplasty while 44,433 did not (Control). We found that patients with a history of abdominoplasty had significantly higher gravidity, were largely located in the Southern and Midwest region, and had higher counts of vaginal deliveries and cesarean sections, when compared to the Control cohort (Table 1). After propensity score matching, we found lower risk of pre-eclampsia and PPROM in patients with abdominoplasty (OR [95%CI] = 0.46 [0.32, 0.67], p < 0.0001, Table 2). Furthermore, abdominoplasty was associated with increased risk of preterm delivery (OR [95%CI] = 2.15 [1.48, 3.13], p = 0.0002, Table 2). We did not find significant differences in the other perinatal outcomes (Table 2). DiscussionOur data suggest that abdominoplasty may be associated with a relative increase in rates of preterm delivery and cesarean delivery, but other perinatal outcomes are not increased. This provides evidence that future desire for pregnancy need not be a relative contraindication to abdominoplasty.

Developing the future research agenda for the health and social care workforce in the United Kingdom: Findings from a national forum for policymakers and researchers.

There is a gap between healthcare workforce research and decision-making in policy and practice. This matters more than ever given the urgent staffing crisis. As a national research network, we held the first ever United Kingdom (UK) forum on healthcare workforce evidence in March 2023. This paper summarises outputs of the event including an emerging UK healthcare workforce agenda and actions to build research capacity and bridge the gap between academics and decisionmakers. The forum brought together over 80 clinical and system leaders, policymakers and regulators with workforce researchers. Fifteen sessions convened by leading experts combined knowledge exchange with deliberative dialogue over 2days. Topics ranged from workforce analytics, forecasting, international migration to interprofessional working. In the small groups that were convened, important gaps were identified in both the existing research body and uptake of evidence already available. There had not been enough high quality evaluations of recent workforce initiatives implemented at pace, from virtual wards to e-rostering. The pandemic had accelerated many changes in skillmix and professional roles with little learning from other countries and systems. Existing research was often small-scale or focused on individual, rather than organisational solutions in areas such as staff wellbeing. In terms of existing research, managers were often unaware of accepted high quality evidence in areas like the relationship between registered nurse staffing levels and patient outcomes. More work is needed to engage new disciplines from labour economics and occupational health to academic human resources and to strengthen the emerging diverse community of healthcare workforce researchers.

Sepsis Canada: Building a national research network for sepsis awareness

Sepsis Canada: Building a national research network for sepsis awareness Sepsis is a life-threatening condition estimated to affect 49 million people annually worldwide; yet it is not widely understood. In this article, we hear how Sepsis Canada is working to promote sepsis awareness through supporting research, public education, and cross-disciplinary training. In 2017 the World Health Assembly declared sepsis, defined as the life-threatening organ dysfunction due to infection, a global health priority. They emphasized the critical need for advancements in prevention, diagnosis, and clinical management. With a staggering cost exceeding $2.6 billion annually and a mortality rate ranging from 20-35% for those requiring ICU care, the impact of sepsis on the Canadian healthcare system has been immense. (1)

(Resonance) Raman optical activity among chiroptical spectroscopies: Quo vadis?

AbstractAlthough the potential of Raman Optical Activity (ROA) spectroscopy in the field of organic and inorganic materials research has been well demonstrated, its practical application is still limited. This work shows historical background, current state of the art and challenges of ROA spectroscopy facing scientists today. Expectations and development prospects for the coming years are also discussed. Efforts have already been made to improve but also to properly interpret the ROA signal when the ROA technique is combined with other spectroscopies (i.e., ROA/Electronic Circular Dichroism and ROA/Circularly Polarized Luminescence). The paper shows how to intensify the ROA effect to shorten the spectrum accumulation time, control possible artefacts and support the analysis of ROA spectra with actual and new theoretical approaches. However, the challenge is to increase the interest in this technique among the academic community, develop reliable protocols and adapt them for practical use. National and international research networks can significantly contribute to the growth of methodologies and standardization in areas in which the ROA has so far been little used. This paper presents a perspective vision for the future progress of ROA alongside other chiroptical methods.

Differences in Primary Care Management of Patients With Adult Attention Deficit Hyperactivity Disorder (ADHD) Based on Race and Ethnicity

Objective: Examine differences in care patterns around adult ADHD between race (White/Non-White) and ethnic (Hispanic/Non-Hispanic) groups utilizing existing quality measures (QMs), concerning diagnosis, treatment, and medication prescribing. Methods: The AAFP National Research Network in partnership with SUNY Upstate Medical used an EHR dataset to evaluate achievement of 10 ADHD QMs. The dataset was obtained from DARTNet Institute and includes 4 million patients of 873 behavioral and primary care practices with at least 100 patients from 2010 to 2020. Patients 18-years or older with adult ADHD were included in this analysis. Results: White patients and Non-Hispanic/Latinx patients were more likely to achieve these QMs than Non-White patients and Hispanic/Latinx patients, respectively. Differences between groups concerning medication and monitoring demonstrate a disparity for Non-White and Hispanic/Latinx populations. Conclusions: Using QMs in EHR data can help identify gaps in ADHD research. There is a need to continue investigating disparities of quality adult ADHD care.

Addressing adverse social determinants of health in pediatric primary care: Study protocol for a hybrid type 2 effectiveness-implementation randomized controlled trial in two national pediatric practice-based research networks

BackgroundGrowing evidence linking social determinants of health (SDOH) to child health outcomes has prompted widespread recommendations for pediatricians to screen and refer for adverse SDOH at primary care visits. Yet there is little evidence to date demonstrating the effectiveness of practice-based SDOH screening and referral interventions on increasing family engagement with resources. This hybrid type 2 effectiveness-implementation trial aims to demonstrate the non-inferiority of a low-touch implementation strategy in order to facilitate dissemination of an existing SDOH screening and referral system (WE CARE) and demonstrate its effectiveness and sustainability in various pediatric practices. MethodsWe recruited eighteen pediatric practices in fourteen US states through two pediatric practice-based research networks. For this stepped wedge cluster RCT, practices serve as their own controls during the Usual Care phase and implement WE CARE during the intervention phase via one of two randomized implementation strategies: self-directed, pre-recorded webinar vs. study team-facilitated, live webinar. We collect data at practice, clinician/staff, and parent levels to assess outcomes grounded in the Proctor Conceptual Model of Implementation Research. We use generalized mixed effects models and differences in proportions to compare rates of resource referrals by implementation strategy, and intention-to-treat analysis to compare odds of engagement with new resources among families enrolled in the Usual Care vs. WE CARE phases. DiscussionFindings from this trial may inform decisions about broader dissemination of SDOH screening systems into a diverse spectrum of pediatric practices across the US and potentially minimize the impact of adverse SDOH on children and families.

Examining the role of post-traumatic stress disorder, chronic pain and opioid use in burn patients: A multi-cohort analysis.

Burns are associated with a high risk of developing comorbidities, including psychiatric disorders such as Post-Traumatic Stress Disorder (PTSD). This study aimed to evaluate the association between PTSD and opioid use, chronic pain syndrome, and other outcomes following burn injuries. A retrospective case-control analysis was conducted using the TriNetX database, a federated, de-identified national health research network with 92 healthcare organizations across the United States. Burn patients with and without PTSD were identified and matched based on demographics and injury severity. The likelihood of opioid use and other outcomes, including chronic pain, depression, anxiety, and emergency department visits, were compared between cohorts. Our study examined eight cohorts based on the percentage of total body surface area burned (TBSA%) and the presence or absence of PTSD. These cohorts were stratified as follows: patients with or without PTSD with TBSA, 1-19%, 20-39%, 40-59%, and 60+%. This stratification enabled a detailed comparison of outcomes across different levels of burn severity and the presence of PTSD, providing a comprehensive context for the results. The mean age of patients with PTSD was slightly higher (46 ± 16 years) than that of those without PTSD (43 ± 23 years). Incidence of PTSD ranged from 4.96 to 12.26%, differing by percentage of total body surface area burned (TBSA%). Significant differences in various complications and comorbidities were observed between patients with and without PTSD within each burn severity cohort. Compared to the patients without PTSD, patients with PTSD had a significantly higher risk of opioid use in all cohorts: TBSA 1-19%, 20-39%, 40-59%, and 60+%. PTSD is associated with a significant increased likelihood of adverse outcomes following severe burns, particularly opioid use, chronic pain, psychological disorders, and higher healthcare utilization. These findings underscore the importance of identifying PTSD in burn patient management and highlight the need for further research into postoperative pain management strategies for this vulnerable population. Psychological assessments and cognitive behavioral therapy may be particularly useful. Burn injuries can cause serious problems like infections and organ failure, and they sometimes lead to death. Severe burns affect about 4.4% of all burn cases and can be deadly in nearly 18% of those cases. They cause inflammation that can lead to long-term heart, metabolism, and thinking problems. These injuries can also cause mental health issues like PTSD (Post-Traumatic Stress Disorder).PTSD means people might relive their trauma through bad memories or nightmares, avoid thinking about it, and feel different emotions for at least a month after it happens. People who survive burns often get PTSD because the injury is so traumatic and takes a long time to heal. Between 2% and 30% of burn survivors might feel very stressed soon after, and up to 40% could have PTSD within six months.People with PTSD from burns often also have depression and anxiety because recovering and going back to normal life is tough. Doctors often give strong painkillers called opioids to burn patients, but they can be very addictive. People with PTSD and opioid problems often also have other mental health issues. A study in 2023 found that 80% of burn patients with opioid problems also had other mental health problems. This shows how important it is to treat pain and mental health carefully in burn survivors.This study looks at how PTSD affects opioid use in people with burns. It uses data from many hospitals to see if PTSD makes pain worse and makes people use more opioids after surgery. Learning about this can help doctors find better treatments and stop people from using opioids too much if they have PTSD from a burn.

Evaluation and lessons learned from the dissemination and implementation science scholars program in the national cancer prevention and control research network.

The Centers for Disease Control and Prevention (CDC)-funded Cancer Prevention and Control Research Network (CPCRN) has been a leader in cancer-related dissemination & implementation (D&I) science. Given increased demand for D&I research, the CPCRN Scholars Program launched in 2021 to expand the number of practitioners, researchers, and trainees proficient in cancer D&I science methods. The evaluation was informed by a logic model and data collected through electronic surveys. Through an application process (baseline survey), we assessed scholars' competencies in D&I science domains/subdomains, collected demographic data, and asked scholars to share proposed project ideas. We distributed an exit survey one month after program completion to assess scholars' experience and engagement with the program and changes in D&I competencies. A follow-up survey was administered to alumni nine months post-program to measure their continued network engagement, accomplishments, and skills. Three cohorts completed the program, consisting of 20, 17, and 25 scholars in Years 1-3, respectively. There was a significant increase in the total D&I competency scores for all three cohorts for 4 overarching domains and 43 subdomains (MPre = 1.38 MPost = 1.89). Differences were greatest for the domain of Practice-Based Considerations (0.50 mean difference) and Theory & Analysis (0.47 mean difference). Alumni surveys revealed that scholars appreciated access to D&I-focused webinars, toolkits, and training resources. 80% remain engaged with CPCRN workgroups and investigators. Program evaluation with scholars and alumni helped with ongoing quality assurance, introspection, and iterative program adaptation to meet scholars' needs. This approach is recommended for large-scale capacity-building training programs.