Balance Impairment in the Burn Population: A Burn Model System National Database Study.

Balance is an important component of daily function and impairments can lead to injury and quality-of-life limitations. Balance is not well studied in the burn population. This study examines the frequency of long-term balance impairments and associated factors after a burn injury.

Measuring the Social Impact of Burn injuries in Australia: An Adaptation of the Life Impact Burn Recovery Evaluation - The Aus-LIBRE Profile.

Burn survivors can experience social participation challenges throughout their recovery. The aim of this study was to develop a novel Australian English translation of the Life Impact Burn Recovery Evaluation (LIBRE) Profile, the Aus-LIBRE Profile. This study consisted of three stages: 1) translation of the LIBRE Profile from American to Australian English by Australian researchers/burns clinicians; 2) piloting and cognitive evaluation of the Aus-LIBRE Profile with burn survivors to assess the clarity and consistency of the interpretation of each individual item, and 3) review of the Aus-LIBRE Profile by colleagues who identify as Aboriginal Australians for cross-cultural validation.

Moderation Effects of Daily Behavior on Associations Between Symptoms and Social Participation Outcomes After Burn Injury: A 6-Month Digital Phenotyping Study.

Objective: To examine the moderation effects of daily behavior on the associations between symptoms and social participation outcomes after burn injury.

Design: A 6-month prospective cohort study.

Setting: Community.

Beyond surviving: A scoping review of collaborative care models to inform the future of postdischarge trauma care.

Trauma centers demonstrate an impressive ability to save lives, as reflected by inpatient survival rates of more than 95% in the United States. Nevertheless, we fail to allocate sufficient effort and resources to ensure that survivors and their families receive the necessary care and support after leaving the trauma center. The objective of this scoping review is to systematically map the research on collaborative care models that have been put forward to improve trauma survivorship.

Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis.

Introduction: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000-2.5 million individuals in the United States. Persons with ME/CFS have a substantial reduction in their ability to engage in pre-illness levels of activity.

Predictors at 6 and 12 Months for Social Participation Outcome at 24 Months in the Adult Burn Injury Population: A Burn Model System National Database Study.

Objective: To identify clinical factors (physical and psychological symptoms and post-traumatic growth) that predict social participation outcome at 24-month after burn injury.

Design: A prospective cohort study based on Burn Model System National Database.

Setting: Burn Model System centers.

Digital Interventions for Social Participation in Adults with Long-term Physical Conditions: A Systematic Review.

This review aims to identify and evaluate digital interventions for social participation in the growing population of adults with long-term physical conditions. Articles were sourced from MEDLINE, EMBASE, CINAHL and PsycINFO databases using subject headings and keywords related to "social participation" and "digital technology". Studies that adopted digital technology interventions to improve social participation in adults with long-term physical conditions were included.

Conceptualization of Participation: A Qualitative Synthesis of Brain Injury Stakeholder Perspectives.

Background: The return to participation in meaningful life roles for persons with acquired brain injury (pwABI) is a goal shared by pwABI, their families, clinicians, and researchers. Synthesizing how pwABI define participation will help to identify the aspects of participation important to pwABI and can inform a person-centered approach to participation outcome assessment. To-date, the qualitative synthesis approach has been used to explore facilitators and barriers of participation post-stroke, and views about participation among individuals with stroke in the UK.

Trajectory Curves for Purposes of Benchmarking and Predicting Clinical Outcomes: A Scoping Review.

Trajectory curves are valuable tools to benchmark patient health status and predict future outcomes. A longitudinal study is underway to examine social participation after burn injury using the Life Impact Burn Recovery Evaluation (LIBRE) Profile with the goal of developing trajectory curves for specific domains that focus on social reintegration. We conducted a scoping review to inform and understand trajectory curves applied in clinical settings to compare outcomes for an individual to a matched cohort of comparable patients or predicted expected outcomes over time.

Item Pool Development for the School-Aged Life Impact Burn Recovery Evaluation Profile Computerized Adaptive Test: An Observer-Reported Outcome Assessment Measuring the Impact of Burn Injuries in School-Aged Children.

The transition from early childhood to teen years (5-12) is a critical time of development, which can be made particularly challenging by a burn injury. Assessing postburn recovery during these years is important for improving pediatric survivors' development and health outcomes. Few validated burn-specific measures exist for this age group.

Spinal Cord Injury-Functional Index/Capacity: Responsiveness to Change Over Time.

Objective: To establish responsiveness of 3 Spinal Cord Injury-Functional Index/Capacity (SCI-FI/C) item banks in the first year after spinal cord injury (SCI).

Design: Longitudinal patient-reported outcomes assessment replicated through secondary analysis of an independent data set.

Setting: A total of 8 SCI Model Systems rehabilitation hospitals in the United States.

A Concordance Table to Convert FIM Basic Mobility and Self-Care Scale Scores to SCI-FI/AT Scores.

Objective: To estimate Spinal Cord Injury Functional Index Assistive Technology (SCI-FI/AT) scores from FIM motor items.

Design: Secondary data analysis.

Setting: Fourteen Spinal Cord Injury Model Systems (SCIMS) programs.

Development and initial validation of ability levels to interpret pediatric spinal cord injury activity measure and pediatric measure of participation scores.

Purpose: To develop ability levels and descriptions to interpret Pediatric Spinal Cord Injury Activity Measure (PEDI-SCI AM) and Pediatric Measure of Participation (PMoP) scores.

Methods: Mixed-methods approach to 1.) create item maps using PEDI-SCI AM and PMoP calibration data; 2.

Pediatric measure of participation short forms version 2.0: development and evaluation.

Design: Mixed methods cohort study.

Objectives: To develop and assess psychometric properties of the pediatric measure of participation (PMoP) short forms (SF) version 2.0.

Measuring the impact of burn injury on the parent-reported health outcomes of children 1-to-5 years: Item pool development for the Preschool Life Impact Burn Recovery Evaluation (LIBRE) Profile.

Modern, reliable, and valid outcome measures are essential to understanding the health needs of young children with burn injuries. Burn-specific and age-appropriate legacy assessment tools exist for this population but are hindered by the limitations of existing paper-based instruments. The purpose of this study was to develop item pools comprised of questions appropriate for children aged 1-5 with burn injuries.

Validation of the Spinal Cord Injury-Functional Index for Use in Community-Dwelling Individuals With SCI.

Objective: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index (SCI-FI) instruments in a community-dwelling sample.

Design: Cross-sectional study.

Setting: Community setting.

Sexual activity and romantic relationships after burn injury: A Life Impact Burn Recovery Evaluation (LIBRE) study.

Background: Engaging in healthy sexual activity and romantic relationships are important but often neglected areas of post-burn rehabilitation. The degree to which persons with burn injuries engage in sexual activity and romantic relationships is not well understood. This study examined demographic and clinical characteristics predicting engagement in sexual activity and romantic relationships in a sample of adult burn survivors compared to a general United States sample.

Interpreting Life Impact Burn Recovery Evaluation Profile Scores for Use by Clinicians, Burn Survivors, and Researchers.

The Life Impact Burn Recovery Evaluation (LIBRE) Profile is a patient-reported outcome measure developed to assess social participation in adult burn survivors. This study identified numeric score cut-points that define different levels of social participation ability and described each level. An expert panel identified numeric score cut-points that distinguish different levels of social participation for the six LIBRE Profile domains.

Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures.

Barriers in the built environment, enduring stereotypes and biases, and limited disability competency of health care providers compromise access to and quality of reproductive health care for women with physical disabilities. One way to improve our understanding of critical factors that drive reproductive health inequity and its impact on access to care is to use patient-reported outcome measures (PROMs) that capture relevant and meaningful information about experience. In this study, we developed a conceptual framework as the foundation for relevant and clinically meaningful patient-reported outcome measures targeting the interface of disability and reproductive health.

Measuring the Impact of Burn Injury on the Parent-Reported Health Outcomes of Children 1 to 5 Years: A Conceptual Framework for Development of the Preschool Life Impact Burn Recovery Evaluation Profile CAT.

Due to the rapid developmental growth in preschool-aged children, more precise measurement of the effects of burns on child health outcomes is needed. Expanding upon the Shriners Hospitals for Children/American Burn Association Burn Outcome Questionnaire 0 to 5 (BOQ0-5), we developed a conceptual framework describing domains important in assessing recovery from burn injury among preschool-aged children (1-5 years). We developed a working conceptual framework based on the BOQ0-5, the National Research Council and Institute of Medicine's Model of Child Health, and the World Health Organization's International Classification of Functioning, Disability, and Health for Children and Youth.

Tracking Spinal Cord Injury Functional Outcomes Across the Lifespan: Validation of Linking Coefficients.

Objective: Validation of linking coefficients to transform Pediatric Spinal Cord Injury Activity Measure (PEDI-SCI/AM) scores to adult Spinal Cord Injury-Functional Index (SCI-FI) scores.

Design: This cross-sectional study administered PEDI-SCI/AM and SCI-FI computerized adaptive tests (CATs) and short forms (SFs) to children with SCI and parents or caregivers.

Setting: Hospitals, university, and rehabilitation institute.