Feasibility of BrainSTORM, a Traumatic Brain Injury Transitional Care Intervention.

OBJECTIVE: To investigate the feasibility, acceptability, and clinical outcome measures of a transitional care intervention for patients with traumatic brain injury (TBI) and their family caregivers. SETTING: Inpatient and outpatient rehabilitation at a level I trauma center in the Southeastern United States. PARTICIPANTS: Patients (ages 18-75) diagnosed with moderate to severe TBI, receiving rehabilitation, and their family caregivers. DESIGN: Quasi-experimental, single-arm, single-center feasibility study with pre- and post-test design. Participants completed a 4-month transitional care program involving monthly education and social support. MAIN MEASURES: Feasibility of enrollment, data collection, intervention completion rates, and intervention acceptability. Clinical outcome measures included patient quality of life (QOL) (12-Item Short Form Health Survey (SF-12), primary outcome) and patient and caregiver self-efficacy (Self-Efficacy for Management of Chronic Conditions Scale). RESULTS: Eleven dyads and 1 monad enrolled (N = 23, 12 patients, 11 caregivers). All completed baseline data; 91.3% (n = 21, 11 patients, 10 caregivers) completed 2-month (intervention midpoint) data; and 86% (n = 20, 11 patients, 9 caregivers) completed 4-month (intervention endpoint) data. The intervention completion rate was 91.67%. Participants engaged in a mean of 2.17 (SD = 1.34) monthly educational webinars and 2.42 (SD = 1.51) social support groups during the intervention period. Approximately 70% of participants (n = 16, 9 patients, 7 caregivers) completed acceptability data, indicating positive intervention experiences (patients: mean 9.44/10 [SD = 1.01]; caregivers: mean 9.57/10 [SD = 0.79]). Patient QOL scores did not statistically improve over time; however, patient self-efficacy scores did statistically significantly improve from baseline (mean = 7.03, SD = 1.53; P = .0197) to intervention end point (4 months) (mean = 8.35, SD = 1.71). CONCLUSION: Brain Injury Support To Optimize Recovering Minds (BrainSTORM) is a promising new TBI transitional care intervention that has potential to enhance care standards for patients with TBI and their family caregivers. Further research is needed to determine its efficacy.

The BETTER Traumatic Brain Injury Transitional Care Intervention: A Feasibility Study.

This study aimed to investigate the feasibility, acceptability, and clinical outcome measures of BETTER (Brain Injury Education, Training, and Therapy to Enhance Recovery), a culturally tailored traumatic brain injury (TBI) transitional care intervention, among diverse younger adult patients with TBI (age 18-64) and their caregivers. Trained clinical interventionists addressed patient/family needs; established goals; coordinated post-hospital care and resources; and provided patient/family training on self- and family-management coping skills. Fifteen dyads enrolled (N = 31, 15 patients, 16 caregivers). All completed baseline data; 74.2% (n = 23; 10 patients, 13 caregivers) completed 8-week data; 83.8% (n = 26; 13 each) completed 16-week data. Approximately 38% (n = 12, 3 patients, 9 caregivers) completed acceptability data, showing positive experiences (mean = 9.25, range 0-10; SD = 2.01). Overall and mental quality of life (QOL) scores did not differ over time but physical QOL scores did improve over time (baseline: 30.3, 8 weeks: 46.5, 16 weeks: 61.6; p = 0.0056), which was considered to be a suitable outcome measure for a future trial. BETTER is a promising intervention with implications to improve TBI care standards. Research is needed to determine efficacy in a randomized trial.

"If you respect me, you are respecting my culture": methods and recommendations for personalizing a TBI transitional care intervention.

OBJECTIVE: Despite research, national legislation, and clinical guidelines supporting transitional care, there is minimal benefit from existing transitional care interventions for racial/ethnic minorities with traumatic brain injury (TBI) discharged home from acute hospital care. Existing TBI transitional care interventions are not tailored to address the needs/preferences of patients from various racial/ethnic minority groups. The purpose of this study was to describe use of personalization to tailor a TBI transitional care intervention for various racial/ethnic groups. DESIGN: Following preliminary intervention manual development, a qualitative descriptive study was conducted using eight focus groups with 40 English-and Spanish-speaking participants (12 patients, 12 caregivers, and 16 providers). RESULTS: Three personalization-related themes emerged: 1) what is important to me, 2) finding someone to deliver the intervention who can adapt to my needs, and 3) respect over culture. Findings informed personalization strategies within our final manual. CONCLUSIONS: We recommend researchers who wish to use personalization to tailor interventions to consider: 1) allowing stakeholders to dictate what is most important and 2) implementing an iterative intervention development process with input from diverse stakeholders. Findings have implications for informing the development of transitional care interventions to increase the likelihood that interventions are inclusive of needs and preferences of various races/ethnicities.

Estimated Global Proportions of Individuals With Persistent Fatigue, Cognitive, and Respiratory Symptom Clusters Following Symptomatic COVID-19 in 2020 and 2021.

Importance: Some individuals experience persistent symptoms after initial symptomatic SARS-CoV-2 infection (often referred to as Long COVID). Objective: To estimate the proportion of males and females with COVID-19, younger or older than 20 years of age, who had Long COVID symptoms in 2020 and 2021 and their Long COVID symptom duration. Design, Setting, and Participants: Bayesian meta-regression and pooling of 54 studies and 2 medical record databases with data for 1.2 million individuals (from 22 countries) who had symptomatic SARS-CoV-2 infection. Of the 54 studies, 44 were published and 10 were collaborating cohorts (conducted in Austria, the Faroe Islands, Germany, Iran, Italy, the Netherlands, Russia, Sweden, Switzerland, and the US). The participant data were derived from the 44 published studies (10 501 hospitalized individuals and 42 891 nonhospitalized individuals), the 10 collaborating cohort studies (10 526 and 1906), and the 2 US electronic medical record databases (250 928 and 846 046). Data collection spanned March 2020 to January 2022. Exposures: Symptomatic SARS-CoV-2 infection. Main Outcomes and Measures: Proportion of individuals with at least 1 of the 3 self-reported Long COVID symptom clusters (persistent fatigue with bodily pain or mood swings; cognitive problems; or ongoing respiratory problems) 3 months after SARS-CoV-2 infection in 2020 and 2021, estimated separately for hospitalized and nonhospitalized individuals aged 20 years or older by sex and for both sexes of nonhospitalized individuals younger than 20 years of age. Results: A total of 1.2 million individuals who had symptomatic SARS-CoV-2 infection were included (mean age, 4-66 years; males, 26%-88%). In the modeled estimates, 6.2% (95% uncertainty interval [UI], 2.4%-13.3%) of individuals who had symptomatic SARS-CoV-2 infection experienced at least 1 of the 3 Long COVID symptom clusters in 2020 and 2021, including 3.2% (95% UI, 0.6%-10.0%) for persistent fatigue with bodily pain or mood swings, 3.7% (95% UI, 0.9%-9.6%) for ongoing respiratory problems, and 2.2% (95% UI, 0.3%-7.6%) for cognitive problems after adjusting for health status before COVID-19, comprising an estimated 51.0% (95% UI, 16.9%-92.4%), 60.4% (95% UI, 18.9%-89.1%), and 35.4% (95% UI, 9.4%-75.1%), respectively, of Long COVID cases. The Long COVID symptom clusters were more common in women aged 20 years or older (10.6% [95% UI, 4.3%-22.2%]) 3 months after symptomatic SARS-CoV-2 infection than in men aged 20 years or older (5.4% [95% UI, 2.2%-11.7%]). Both sexes younger than 20 years of age were estimated to be affected in 2.8% (95% UI, 0.9%-7.0%) of symptomatic SARS-CoV-2 infections. The estimated mean Long COVID symptom cluster duration was 9.0 months (95% UI, 7.0-12.0 months) among hospitalized individuals and 4.0 months (95% UI, 3.6-4.6 months) among nonhospitalized individuals. Among individuals with Long COVID symptoms 3 months after symptomatic SARS-CoV-2 infection, an estimated 15.1% (95% UI, 10.3%-21.1%) continued to experience symptoms at 12 months. Conclusions and Relevance: This study presents modeled estimates of the proportion of individuals with at least 1 of 3 self-reported Long COVID symptom clusters (persistent fatigue with bodily pain or mood swings; cognitive problems; or ongoing respiratory problems) 3 months after symptomatic SARS-CoV-2 infection.

A global systematic analysis of the occurrence, severity, and recovery pattern of long COVID in 2020 and 2021.

Importance: While much of the attention on the COVID-19 pandemic was directed at the daily counts of cases and those with serious disease overwhelming health services, increasingly, reports have appeared of people who experience debilitating symptoms after the initial infection. This is popularly known as long COVID. Objective: To estimate by country and territory of the number of patients affected by long COVID in 2020 and 2021, the severity of their symptoms and expected pattern of recovery. Design: We jointly analyzed ten ongoing cohort studies in ten countries for the occurrence of three major symptom clusters of long COVID among representative COVID cases. The defining symptoms of the three clusters (fatigue, cognitive problems, and shortness of breath) are explicitly mentioned in the WHO clinical case definition. For incidence of long COVID, we adopted the minimum duration after infection of three months from the WHO case definition. We pooled data from the contributing studies, two large medical record databases in the United States, and findings from 44 published studies using a Bayesian meta-regression tool. We separately estimated occurrence and pattern of recovery in patients with milder acute infections and those hospitalized. We estimated the incidence and prevalence of long COVID globally and by country in 2020 and 2021 as well as the severity-weighted prevalence using disability weights from the Global Burden of Disease study. Results: Analyses are based on detailed information for 1906 community infections and 10526 hospitalized patients from the ten collaborating cohorts, three of which included children. We added published data on 37262 community infections and 9540 hospitalized patients as well as ICD-coded medical record data concerning 1.3 million infections. Globally, in 2020 and 2021, 144.7 million (95% uncertainty interval [UI] 54.8-312.9) people suffered from any of the three symptom clusters of long COVID. This corresponds to 3.69% (1.38-7.96) of all infections. The fatigue, respiratory, and cognitive clusters occurred in 51.0% (16.9-92.4), 60.4% (18.9-89.1), and 35.4% (9.4-75.1) of long COVID cases, respectively. Those with milder acute COVID-19 cases had a quicker estimated recovery (median duration 3.99 months [IQR 3.84-4.20]) than those admitted for the acute infection (median duration 8.84 months [IQR 8.10-9.78]). At twelve months, 15.1% (10.3-21.1) continued to experience long COVID symptoms. Conclusions and relevance: The occurrence of debilitating ongoing symptoms of COVID-19 is common. Knowing how many people are affected, and for how long, is important to plan for rehabilitative services and support to return to social activities, places of learning, and the workplace when symptoms start to wane. Key Points: Question: What are the extent and nature of the most common long COVID symptoms by country in 2020 and 2021?Findings: Globally, 144.7 million people experienced one or more of three symptom clusters (fatigue; cognitive problems; and ongoing respiratory problems) of long COVID three months after infection, in 2020 and 2021. Most cases arose from milder infections. At 12 months after infection, 15.1% of these cases had not yet recovered.Meaning: The substantial number of people with long COVID are in need of rehabilitative care and support to transition back into the workplace or education when symptoms start to wane.

Design, methods, and baseline characteristics of the Brain Injury Education, Training, and Therapy to Enhance Recovery (BETTER) feasibility study: a transitional care intervention for younger adult patients with traumatic brain injury and caregivers.

OBJECTIVES: We developed a patient- and family-centered traumatic brain injury (TBI) transitional care intervention, called BETTER (Brain Injury Education, Training, and Therapy to Enhance Recovery), to improve quality of life (via SF-36) of younger TBI patients of different racial groups discharged home from acute hospital care and caregivers. We describe our design, methods, and baseline characteristics for our feasibility study. METHODS: We co-developed BETTER with input from key stakeholders (TBI patients and caregivers, healthcare providers, and interdisciplinary research team members). BETTER is guided by the Individual and Family Self-Management Theory, our team's prior research, as well as literature used to support, educate, and train patients and families recovering from TBI and other conditions. The intervention is delivered by trained clinical interventionists (transitional care managers), beginning 24-72 h pre-discharge to 16 weeks post-discharge. BETTER offers tailored transitional care support to patient/family dyads, including assessing needs; establishing goals; coordinating post-hospital care, services, and resources; and providing patient/family education and training on brain injury coping skills. The majority of the intervention is delivered remotely via phone and remote video conferencing platform (Clinicaltrials.gov: NCT04584554). RESULTS: We enrolled 15 dyads (N = 31, 15 patients, 16 caregivers) in this single arm, single center feasibility study. Most patients were men (n = 11, 73.33%), had a mean age of 39.07 (SD: 15.15), and were Black (n = 9, 60%), White (n = 5, 33.3%), or American Indian (n = 1, 0.66%). Injury severities were mild (n = 6, 40%), moderate (n = 4, 26.6%) or severe (n = 5, 33.33%). Most patients were insured (n = 10; 66.7%), had a high school education (n = 6; 40%); and earned $30,000 or less per year (n = 11; 73.3%). Most caregivers were married (n = 9, 56.25%) women (n = 14, 87.5%) with a mean age of 43.38 (SD: 10.45) and were Black (n = 8, 50%), White (n = 7, 43.75%), or American Indian (n = 1, 0.62%). Most caregivers identified as the spouse (n = 7; 43.75%) or parent (n = 6; 37.5%) of the patient. CONCLUSIONS: BETTER is among the first TBI transitional care intervention to address needs/preferences for younger TBI patients of different racial groups after discharge home from acute hospital care and families. Findings can be used to inform future work.

A Mixed-Methods Examination of Referral Processes to Clinic-Community Partnership Programs for the Treatment of Childhood Obesity.

Background: Partnerships with community programs have been used to improve access to obesity care and address clinical barriers to childhood obesity management; however, little is known about the program referral process. The objective of this study was to identify factors that affect the referral from clinics to community-based programs. Methods: Active Recreation through Community-Healthcare Engagement Study (ARCHES) is a mixed-method, implementation study designed to test the feasibility of establishing clinic-community partnerships to treat childhood obesity. We collected clinical referral and program attendance data from the six ARCHES clinic-community partnerships and conducted semistructured interviews (n = 19) with key stakeholders. Logistic regression models were used to identify referral characteristics associated with ever attending a community program. We used deductive thematic analysis to examine contextual factors affecting the clinical referral and subsequent attendance at the community programs. Results: Patients referred from individual providers [odds ratio (OR): 3.20, 95% confidence interval (CI): 1.08-9.48], specialty clinics (OR: 2.73, 95% CI: 1.48-5.05), and community wellness clinics (OR: 3.42, 95% CI: 1.05-11.13), had greater odds of ever attending the programs compared with patients from primary care clinics. Patients referred to cohort-based programs compared with open enrollment programs had greater odds of ever attending the programs. Stakeholders emphasized the value of communication within the partnership and with patients in clinical settings. Effective provider communication with patients involved engaging and program endorsing conversations to explain the value of the program. Conclusions: We identified factors that may improve the referral process in clinic-community partnerships to provide resources to primary care providers looking to address childhood obesity. Clinical Trial Registration number: NCT03246763.

Transitions of care interventions to improve quality of life among patients hospitalized with acute conditions: a systematic literature review.

BACKGROUND: Although transitional care interventions can improve health among patients hospitalized with acute conditions, few interventions use patient quality of life (QOL) as the primary outcome. Existing interventions use a variety of intervention components, are not effective for patients of all races and ethnicities, do not address age-related patient needs, and do not incorporate the needs of families. The purpose of this study was to systematically review characteristics of transitional care intervention studies that aimed to improve QOL for younger adult patients of all race and ethnicities who were hospitalized with acute conditions. METHODS: A systematic review was conducted of empirical literature available in PubMed, Embase, CINAHL, and PsycINFO by November 19, 2019 to identify studies of hospital to home care transitions with QOL as the primary outcome. Data extraction on study design and intervention components was limited to studies of patients aged 18-64. RESULTS: Nineteen articles comprising 17 studies met inclusion criteria. There were a total of 3,122 patients across all studies (range: 28-536). Populations of focus included cardiovascular disease, chronic obstructive pulmonary disease, stroke, breast cancer, and kidney disease. Seven QOL instruments were identified. All interventions were multi-component with a total of 31 different strategies used. Most interventions were facilitated by a registered nurse. Seven studies discussed intervention facilitator training and eight discussed intervention materials utilized. No studies specified cultural tailoring of interventions or analyzed findings by racial/ethnic subgroup. CONCLUSIONS: Future research is needed to determine which intervention components, either in isolation or in combination, are effective in improving QOL. Future studies should also elaborate on the background and training of intervention facilitators and on materials utilized and may also consider incorporating differences in culture, race and ethnicity into all phases of the research process in an effort to address and reduce any health disparities.

"Just tell me in a simple way": A qualitative study on opportunities to improve the transition from acute hospital care to home from the perspectives of patients with traumatic brain injury, families, and providers.

OBJECTIVE: The purpose of this study was to identify areas to improve the transition from acute hospital care to home for patients with traumatic brain injury and their families. DESIGN: Qualitative, descriptive. SETTING: Level I trauma centered located in the Southeastern United States. SUBJECTS: A total of 36 participants (12 patients with traumatic brain injury, 8 family caregivers, 16 providers). MAIN MEASURES: We conducted 55 semi-structured interviews with participants and used conventional content analysis to analyze the data. RESULTS: Findings showed patients, families, and providers recommend three areas for improvement in the transition home from acute hospital care, described in three themes. Theme 1 was "improving patient and family education," with the following sub-themes: (a) TBI-related information and (b) discharge preparation. Theme 2 was "additional provider guidance," with the following sub-themes: (a) communication about patient's recovery timeline and (b) recovery roadmap development. Theme 3 was "increasing systems-level support," with the following sub-themes: (a) scheduling follow-up appointments, (b) using a patient navigator, (c) creating a provider follow-up structure, (d) linking pre-discharge care with post-discharge resources, and (e) addressing social issues. CONCLUSIONS: These findings delineate multiple areas where patients and families need additional support and education during the transition from acute hospital care to home in ways that are currently not being addressed. Findings may be used to improve education and support from providers and health systems given to patients with traumatic brain injury and families and to inform development and testing of transitional care interventions from acute hospital care to home.