Identifying Common Data Elements to Achieve Injury-related Health Equity Across the Lifespan: A Consensus-Driven Approach.

Background: Limited availability and poor quality of data in medical records and trauma registries impede progress to achieve injury-related health equity across the lifespan. Methods: We used a Nominal Group Technique (NGT) in-person workgroup and a national web-based Delphi process to identify common data elements (CDE) that should be collected. Results: The 12 participants in the NGT workgroup and 23 participants in the national Delphi process identified 10 equity-related CDE and guiding lessons for research on collection of these data. Conclusions: These high-priority CDE define a detailed, equity-oriented approach to guide research to achieve injury-related health equity across the lifespan.

Experiences of Alaska Native people living with burn injury and opportunities for health system strengthening.

BACKGROUND: Injuries are a leading cause of death and disability for Alaska Native (AN) people. Alaska Native Tribal Health Consortium (ANTHC) is supporting the development of a burn care system that includes a partnership between Alaska Native Medical Center (ANMC) in Anchorage, AK and UW Medicine Regional Burn Center at Harborview Medical Center (HMC) in Seattle, WA. We aimed to better understand the experiences of AN people with burn injuries across the care continuum to aid development of culturally appropriate care regionalization. METHODS: We performed focus groups with twelve AN people with burn injury and their caregivers. A multidisciplinary team of burn care providers, qualitative research experts, AN care coordinator, and AN cultural liaison led focus groups to elicit experiences across the burn care continuum. Transcripts were analyzed using a phenomenological approach and inductive coding to understand how AN people and families navigated the medical and community systems for burn care and areas for improvement. RESULTS: Three themes were identified: 1-Challenges with local burn care in remote communities including limited first aid, triage, pain management, and wound care, as well as long-distance transport to definitive care; 2-Divergence between cultural values and medical practices that generated mistrust in the medical system, isolation from their support systems, and recovery goals that were not aligned with their needs; 3-Difficulty accessing emotional health support and a survivor community that could empower their resilience. CONCLUSION: Participants reported modifiable barriers to culturally competent treatment for burn injuries among AN people. The findings can inform initiatives that leverage existing resources, including expansion of the Extension for Community Healthcare Outcomes (ECHO) telementoring program, promulgation of the Phoenix Society Survivors Offering Assistance in Recovery (SOAR) to AK, coordination of regionalized care to reduce time away from AK and provide more comfortable community reintegration, and define rehabilitation goals in terms that align with personal goals and subsistence lifestyle skills. Long-distance transport times are non-modifiable, but better pre-hospital care could be achieved by harnessing existing telehealth services and adapting principles of prolonged field care to allow for triage, initial care, and resuscitation in remote environments.

Bilingual randomized controlled trial design, of a telephone-based intervention to promote rehabilitation adherence; A study focus on recruitment of Hispanic children with traumatic brain injury.

BACKGROUND: While Hispanic children experience large long-term disparities in disability after traumatic Brain Injury (TBI), there is a gap in evidenced-based interventions to improve outcomes among this rapidly growing and at high-risk population. We developed and pilot tested a bilingual/bicultural intervention informed by Hispanic families consisting of Brain Injury Education and outpatient Navigation (1st BIEN). It integrates bilingual in-person education enriched by video content delivered through mobile phone devices, with outpatient navigation by bilingual and bicultural navigators during transitions of care and school return. METHODS: Randomized controlled trial to test the efficacy of 1st BIEN to maintain long-term adherence to rehabilitation and determine its effect on children's functional outcomes. The primary outcome is treatment adherence at 6 months post-discharge at centralized acute facilities and community providers. Secondary outcomes are functional status of the child using PROMIS parental report measures and parental health literacy, self-efficacy, and mental health; measured at baseline (pre-injury and discharge) 3-,6- and 12- months post discharge. Children's academic performance is assessed using school records the year before and the year after injury. DISCUSSION: Our study evaluates a novel, flexible and scalable approach using mobile phone devices to aid transitions of care, increase treatment adherence and improve TBI outcomes. It addresses the needs of an understudied population and builds upon their strengths. It is implemented by a bilingual and bicultural team with a deep understanding of the study population. It can serve as a model for TBI family centered interventions for at risk groups. TRIAL REGISTRATION: ClinicalTrials.govNCT05261477. Registered on March 2, 2022.

The role of social determinants of health in the receipt of school services after traumatic brain injury: A focus review on underserved pediatric populations.

BACKGROUND: Return to school is key for community re-integration after a traumatic brain injury (TBI). School support facilitates and ensure a successful transition back to school. However, access to school services is not uniform among U.S. children. OBJECTIVE: To describe school services for children with TBI from minoritized backgrounds and highlight population-specific risk factors and facilitators for accessing services. METHODS: Narrative review of the literature including studies on return to school after a mild-complicated, moderate, or severe TBI, among children enrolled in the U.S. school system. We describe receipt of services, enabling and risk factors, and outcomes, for minority children. RESULTS: There is a gap in knowledge regarding return to school among minoritized children with TBIs. Studies have few participants from racial and ethnic minority backgrounds, or low income or rural communities. Transgender and non-binary youth are not represented in present research efforts. Studies highlight larger barriers to receipt of school services among minority children and additional barriers associated with their minority status. CONCLUSION: Diversity in the U.S pediatric population is increasing. Minoritized populations are at increased risk for TBI and poor outcomes. Research focused on the needs of these populations is required to optimize school return after TBI hospitalization and overall post-discharge care.

Using Billing Codes to Create a Pediatric Functional Status e-Score for Children Receiving Inpatient Rehabilitation.

OBJECTIVE: Provide proof-of-concept for development of a Pediatric Functional Status eScore (PFSeS). Demonstrate that expert clinicians rank billing codes as relevant to patient functional status and identify the domains that codes inform in a way that reliably matches analytical modeling. DESIGN: Retrospective chart review, modified Delphi, and nominal group techniques. SETTING: Large, urban, quaternary care children's hospital in the Midwestern United States. PARTICIPANTS: Data from 1955 unique patients and 2029 hospital admissions (2000-2020); 12 expert consultants representing the continuum of rehabilitation care reviewed 2893 codes (procedural, diagnostic, pharmaceutical, durable medical equipment). MAIN OUTCOME MEASURES: Consensus voting to determine whether codes were associated with functional status at discharge and, if so, what domains they informed (self-care, mobility, cognition/ communication). RESULTS: The top 250 and 500 codes identified by statistical modeling were mostly composed of codes selected by the consultant panel (78%-80% of the top 250 and 71%-78% of the top 500). The results provide evidence that clinical experts' selection of functionally meaningful codes corresponds with codes selected by statistical modeling as most strongly associated with WeeFIM domain scores. The top 5 codes most strongly related to functional independence ratings from a domain-specific assessment indicate clinically sensible relationships, further supporting the use of billing data in modeling to create a PFSeS. CONCLUSIONS: Development of a PFSeS that is predicated on billing data would improve researchers' ability to assess the functional status of children who receive inpatient rehabilitation care for a neurologic injury or illness. An expert clinician panel, representing the spectrum of medical and rehabilitative care, indicated that proposed statistical modeling identifies relevant codes mapped to 3 important domains: self-care, mobility, and cognition/communication.

Trends and Disparities in Inpatient Rehabilitation of Adolescents: The Effect of Demographics, Injury Characteristics, and Facility Type.

BACKGROUND: Intensive rehabilitation of adolescents occurs in general and pediatric inpatient rehabilitation facilities (IRFs), but differences in admission and outcomes by facility type have not been thoroughly investigated, particularly among persons with spinal cord injury (SCI). OBJECTIVES: To investigate factors related to admission to pediatric or adult IRFs among adolescents and compare the rehabilitation outcomes between facility types. METHODS: Using a single-center retrospective cohort study design, demographic information, medical data, and rehabilitation outcomes were obtained by chart review of patients aged 15 to 18 years who received a rehabilitation medicine consultation at an urban level 1 trauma center between 2017 and 2019 (N = 96). Analysis was performed using R statistical software. RESULTS: SCI was the second most common diagnosis (21% of patients) and accounted for 36% of inpatient rehabilitation admissions. SCI patients were more likely to undergo rehabilitation at the level 1 trauma versus pediatric facility (relative risk [RR] = 2.43; 95% confidence interval [CI] = 1.08-5.44) compared to traumatic brain injury patients. Admission to trauma versus pediatric IRF was also associated with Black compared to White race (RR = 2.5; CI = 1.12-5.56), violence compared to other etiologies of injury (RR = 2.0; CI = 1.10-3.77), and Medicaid compared to private insurance (RR = 2.15; CI = 1.01-4.59). Admission to pediatric IRF was associated with longer length of stay than admission to adult IRF when adjusted for diagnosis (30.86 ± 21.82 vs. 24.33 ± 18.17 days; p = .046), but Functional Independence Measures did not differ. CONCLUSION: Adolescents with SCI and those experiencing systemic disadvantages, including racism and poverty, were more likely to be admitted to trauma compared to pediatric IRF.

Caregiver and provider experiences of physical, occupational, and speech therapy for children with medical complexity.

PURPOSE: Children with medical complexity (CMC) often use rehabilitative services ("therapy") to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC. METHODS: Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy. Interviews were recorded, transcribed and coded to identify caregiver and provider reported themes. Applied thematic analysis was used to characterize themes related to study objectives. RESULTS: Participants endorsed challenges setting therapy goals amongst competing patient and family priorities. They also identified logistical challenges to obtaining therapy, including transition from early intervention services to school-based years. Participants raised concerns about variability in obtaining school-based therapy and insurance coverage of community-based therapy. Overall, funding, salary, credentialing requirements, and training impacts the pediatric therapy workforce's ability to meet the need of CMC. CONCLUSION: Setting the ideal "dose" of therapy within the individual and family context can be challenging for CMC. Sufficient government programming, insurance coverage, and workforce availability were barriers to obtaining services. This study adds a more detailed understanding of therapy for CMC that can be used to inform future research and policy work.

Caring for American Indian and Alaska Native Children and Adolescents.

American Indian and Alaska Native (AI/AN) populations have substantial health inequities, and most of their disease entities begin in childhood. In addition, AI/AN children and adolescents have excessive disease rates compared with the general pediatric population. Because of this, providers of pediatric care are in a unique position not only to attenuate disease incidence during childhood but also to improve the health status of this special population as a whole. This policy statement examines the inequitable disease burden observed in AI/AN youth, with a focus on toxic stress, mental health, and issues related to suicide and substance use disorder, risk of and exposure to injury and violence in childhood, obesity and obesity-related cardiovascular risk factors and disease, foster care, and the intersection of lesbian, gay, bisexual, transgender, queer, and Two-Spirit and AI/AN youth. Opportunities for advocacy in policy making also are presented.

Feasibility and Acceptability of a Telephone-Based Intervention for Hispanic Children to Promote Treatment Adherence After Traumatic Brain Injury: A Pilot Study.

OBJECTIVE: To assess the feasibility and acceptability of a telephone-based education and navigation program for Hispanic parents of children hospitalized with traumatic brain injury (TBI). SETTING: Level I trauma hospital and pediatric inpatient rehabilitation unit in the Northwestern United States. PARTICIPANTS: Fourteen Hispanic parent-child dyads. Parents were 85% female, with a mean age of 35 years. Children were 58% male, with a mean age of 9.7 years, and had been hospitalized for complicated mild/moderate (n = 5) or severe (n = 9) TBI. DESIGN: Pilot prospective cohort design. MAIN MEASURES: Feasibility measures include recruitment, retention, and intervention adherence rates. Acceptability of intervention was measured by parents' use of educational materials and satisfaction with navigation program. We also evaluated study processes, including completion of baseline, 3, 6, and 12 months functional assessments of the child; assessment of parental health literacy and self-efficacy; and adherence to follow-up rehabilitation appointments. RESULTS: Eighty-two percent of approached potential participants were recruited into the study. One hundred percent of participants completed the intervention, and 85% had 1-year follow-up. Intervention acceptability was high: 90% reported satisfaction with navigator, and 92% used the educational manual. Assessments demonstrated significant improvement in parents' TBI caregiving and community self-efficacy; 92% attendance to follow-up rehabilitation appointments; and improvement in the child's functional measures, except communication skills. CONCLUSIONS: Findings support feasibility and acceptability of a culturally relevant program to facilitate transitions of care for Hispanic children with TBI. A future randomized trial is warranted to determine the efficacy of the intervention on long-term treatment adherence and the child's post-TBI function.

Transitions to Outpatient Care After Traumatic Brain Injury for Hispanic Children.

BACKGROUND AND OBJECTIVES: Rehabilitation after a child's traumatic brain injury (TBI) occurs in hospital, community, and school settings, requiring coordination of care and advocacy by parents. Our objective was to explore Hispanic parents' experiences during child's transitions of care after TBI. METHODS: We conducted this qualitative study using semistructured interviews. We used a convenient sample of Hispanic parents of children hospitalized for a TBI in a single level I trauma center. Thematic content analysis using iterative deductive coding and triangulation with clinical data was conducted to identify barriers and facilitators for transitions of care. RESULTS: Fifteen mothers, mostly from rural areas and with limited English proficiency, participated in the study. Obtaining outpatient rehabilitation was difficult. Barriers included lack of therapists and clinical providers close to home, worsened by insufficient transportation and other support resources; poor understanding of child's illness and treatments; and suboptimal communication with clinicians and school administrators. Facilitators included interpreter use, availability of Spanish written information, and receipt of inpatient rehabilitation. Parents of patients discharged to inpatient rehabilitation reported that observing therapies, receiving school discharge plans by hospital-teachers, and coordination of care were facilitators to access outpatient treatments and to support school return. Parents of children discharged from the hospital from acute care reported need of legal services to obtain school services. CONCLUSIONS: Hispanic parents, especially those with limited English proficiency, can face significant challenges accessing TBI outpatient rehabilitation and school resources for their children. Although barriers are multifactorial, efforts to improve communication, parent's TBI education, and care coordination during transitions of care may facilitate a child's reintegration to the community and school.

Caregiver and Provider Experiences of Home Healthcare Quality for Children With Medical Complexity.

Despite a growing population of children with medical complexity, little is known about the current quality of pediatric home healthcare. The objective of this study was to characterize the quality of pediatric home healthcare experienced by primary family caregivers (parents) and healthcare providers of children with medical complexity. Semistructured, in-depth key informant interviews of 20 caregivers and 20 providers were conducted and analyzed for factors affecting home healthcare quality using the Institute of Medicine's quality framework (effective, safe, patient-centered, timely, equitable, and efficient). System complexity, insurance denials, and workforce shortages affected patients' ability to establish and maintain access to home healthcare leading to hospital discharge delays and negative family impacts. When home healthcare was accessible, respondents experienced it as effective in improving patient and family daily life and minimizing use of emergency and hospital services. However, respondents identified a need for more pediatric-specific home healthcare training and increased efficiencies in care plan communication. Overall, home healthcare was not perceived as timely or equitable due to access barriers. This study provides a new conceptual framework representing the relationship between home healthcare quality and outcomes for children with medical complexity for future evaluations of quality improvement, research, and policy initiatives.

Research on Injury Disparities: A Scoping Review.

Background: Research on disparities in traumatic injury has not been well characterized, limiting understanding of gaps in research and development of successful interventions. We conducted a scoping review to identify and synthesize research on disparities in intentional and unintentional traumatic injuries. Methods: The review was guided by PRISMA Extension for Scoping Reviews. PubMed, PsycINFO, Web of Science, and CINAHL and systematic reviews from 2007 to 2017 were searched. Eligible articles were peer reviewed; conducted in the United States; and reported on clearly defined physical trauma and disparity, defined by Cochrane PROGRESS-Plus criteria. One reviewer assessed article titles and a second reviewer validated the inclusion with a random sample. Abstract and full-text review by two reviewers determined final inclusion. Results: Of 7382 unique articles screened, 653 articles were included; inter-rater agreement was high (K=0.995). Studies reported on disparities in the acute hospital setting (104) or postacute/rehabilitation (86), with fewer focused on prevention (57) and policy development (6). Research methods used were quantitative (593) with 25 intervention studies, qualitative (45), qualitative/quantitative (7), and community-based participatory research (8). Age ranges of included studies were all ages (124), adults (318), pediatric/youth/adolescents (172), and older adults (40). Racial disparities were most commonly measured (439 studies); 38 created a white/nonwhite binary. Other commonly measured disparities were place of residence (122), insurance (111 studies), gender (89), age (75), and socioeconomic status measures (61). Disparities were noted in all of the categories. Studies commonly aggregated all types of traumatic injuries (129) or all types of violence (105). Conclusions: The extant injury literature lacks research on prevention and policy to address disparities. Many studies aggregated types of trauma and patient groups, preventing an understanding of distinctions between groups and potential interventions. Intervention and community-based research strategies were limited. Future research can better specify measurement of understudied equity categories, trauma types and intent, and racial groups.

Rural-urban disparities in health care costs and health service utilization following pediatric mild traumatic brain injury.

OBJECTIVES: To compare health care costs and service utilization associated with mild traumatic brain injury (mTBI) in rural and urban commercially insured children. DATA SOURCE: MarketScan Commercial Claims and Encounters Data, 2007-2011. STUDY DESIGN: We compared health care costs and outpatient encounters for physical/occupational therapy, speech therapy, and psychiatry/psychology encounters 180 days after mTBI among rural versus urban children (<18 years). PRINCIPAL FINDINGS: A total of 387 846 children had mTBI, with 13 percent residing in rural areas. Adjusted mean total health care costs in the 180 days after mTBI were $2778 (95% CI: 2660-2897) among rural children, compared to $2499 (95% CI: 2471-2528) among urban children (adjusted cost ratio 1.11, 95% CI 1.06-1.16). Rural-urban differences in utilization for specific services were also found. CONCLUSIONS: Total health care costs were higher for rural compared to urban children despite lower utilization of certain services. Differences in health service utilization may exacerbate geographic disparities in adverse outcomes associated with mTBI.

Differences in Injury Characteristics and Outcomes for American Indian/Alaska Native People Hospitalized with Traumatic Injuries: an Analysis of the National Trauma Data Bank.

OBJECTIVE: This study compares characteristics of American Indian/Alaska Natives (AI/AN) and non-Hispanic Whites (NHW) hospitalized for traumatic injury and examines the effect of race on hospital disposition. METHODS: Using 2007-2014 National Trauma Data Bank data, we described differences in demographic and injury characteristics between AI/AN (n = 39,656) and NHWs (n = 3,309,484) hospitalized with traumatic injuries. Multivariable regressions, adjusted for demographic and injury characteristics, compared in-hospital mortality and the risk of discharge to different dispositions (inpatient rehabilitation/long-term care facility, skilled nursing facility, home with home health services) rather than home between AI/AN and NHW patients. RESULTS: Compared to NHWs, a higher proportion of AI/ANs were age 19-44 (49% versus 27%) years and hospitalized with assault-related injuries (25% versus 5%). AI/ANs had lower odds of dying than NHWs during hospitalization (adjusted odds ratio (aOR) 0.72, 95% CI 0.63-0.84). However, AI/ANs also had lower odds than NHWs to discharge to locations with additional health services even after controlling for injury severity (inpatient rehabilitation/long-term care facilities aOR 0.79, 95% CI 0.67-0.93; skilled nursing facility aOR 0.70, 95% CI 0.49-0.98; home with home health services aOR 0.62, 95% CI 0.49-0.79). CONCLUSIONS: Injury patterns and acute hospitalization outcomes were significantly different for AI/ANs compared to NHWs. Injury prevention strategies targeting AI/ANs should reflect these differential injury patterns. Outcomes such as disability and access to rehabilitation services should be included when considering the burden of injury among AI/AN communities.

Culture, Health, Function, and Participation Among American Indian and Alaska Native Children and Youth With Disabilities: An Exploratory Qualitative Analysis.

OBJECTIVE: To investigate the influence of traditional culture on health, disability, and health care services among American Indian and Alaska Native (AI/AN) children and youth with disabilities. DESIGN: Exploratory descriptive qualitative analysis. SETTING: Tertiary children's hospital. PARTICIPANTS: A purposively sampled group (N=17) of AI/AN youth (n=4) with disability lasting at least 6 months age 8-24 years old and parents (n=13) of AI/AN children with disability lasting at least 6 months age 6 months to 17 years old. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participant responses to semistructured interview questions regarding health beliefs, daily activities, participation in cultural activities, and experiences receiving or having their child receive health care and rehabilitation services. RESULTS: Three themes were identified: (1) participation in cultural activities is important for health as an AI/AN person; (2) experiences participating in cultural activities with functional differences; and (3) lack of recognition of the culturally related functional needs of AI/AN children with disabilities by rehabilitation providers. Children participated in cultural activities primarily through attendance at community-wide events. Barriers to participation in cultural activities included environmental barriers and adaptive mobility devices ill-suited to rough terrain. Participants perceived addressing functional needs related to culture, and cultural activities was not an expected part of rehabilitation services. CONCLUSIONS: AI/AN children with disabilities experience barriers to participation in cultural activities, making it hard for them to achieve their definition of ideal health. Rehabilitation services have not identified or addressed these unmet culturally related functional needs.