Showing papers by "Nicole S. Gibran published in 2021"

Validation of PROMIS-29 domain scores among adult burn survivors: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

Abstract: BACKGROUND Patient-reported outcomes are important for understanding recovery after burn injury, benchmarking service delivery and measuring the impact of interventions. PROMIS-29 domains have been validated for use among diverse populations though not among burn survivors. The purpose of this study was to examine validity and reliability of PROMIS-29 scores in this population. METHODS PROMIS-29 scores of physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles, and pain interference were evaluated for validity and reliability in adult burn survivors. Unidimensionality, floor and ceiling effects, internal consistency, and reliability were examined. Differential item functioning (DIF) was used to examine bias with respect to demographic and injury characteristics. Correlations with measures of related constructs (Community Integration Questionnaire, Satisfaction with Life Scale, Post-Traumatic Stress Checklist-Civilian, and Veteran's Rand-12) and known-group differences were examined. RESULTS 876 burn survivors with moderate to severe injury from 6 months-20 years post burn provided responses on PROMIS-29 domains. Participant ages ranged from 18-93 years at time of assessment; mean years since injury was 3.4. All PROMIS domain scores showed high internal consistency (Cronbach's α = 0.87-0.97). There was a large ceiling effect on ability to participate in social roles (39.7%) and physical function (43.3%). One-factor confirmatory factor analyses supported unidimensionality (all CFI >0.95). We found no statistically significant bias (DIF). Reliability was high (>0.9) across trait levels for all domains except sleep, which reached moderate reliability (>0.85). All known-group differences by demographic and clinical characteristics were in the hypothesized direction and magnitude except burn size categories. CONCLUSIONS The results provide strong evidence for reliability and validity of PROMIS-29 domain scores among adult burn survivors. Reliability of the extreme scores could be increased and the ceiling effects reduced by administering PROMIS-43, which includes 6 items per domain, or by administering by computerized adaptive testing. LEVEL OF EVIDENCE This is a Level III psychometric analysis of prospectively collected survey data.

Contracture Severity at Hospital Discharge in Children: A Burn Model System Database Study

Abstract: Contractures can complicate burn recovery. There are limited studies examining the prevalence of contractures following burns in pediatrics. This study investigates contracture outcomes by location, injury, severity, length of stay, and developmental stage. Data were obtained from the Burn Model System between 1994 and 2003. All patients younger than the age of 18 with at least one joint contracture at hospital discharge were included. Sixteen areas of impaired movement from the shoulder, elbow, wrist, hand, hip, knee, and ankle joints were examined. Analysis of variance was used to assess the association between contracture severity, burn size, and length of stay. Age groupings were evaluated for developmental patterns. A P value of less than .05 was considered statistically significant. Data from 225 patients yielded 1597 contractures (758 in the hand) with a mean of 7.1 contractures (median 4) per patient. Mean contracture severity ranged from 17% (elbow extension) to 41% (ankle plantarflexion) loss of movement. Statistically significant associations were found between active range of motion loss and burn size, length of stay, and age groupings. The data illustrate quantitative assessment of burn contractures in pediatric patients at discharge in a multicenter database. Size of injury correlates with range of motion loss for many joint motions, reflecting the anticipated morbidity of contracture for pediatric burn survivors. These results serve as a potential reference for range of motion outcomes in the pediatric burn population, which could serve as a comparison for local practices, quality improvement measures, and future research.

Temperature Sensitivity After Burn Injury: A Burn Model System National Database Hot Topic.

Abstract: People living with burn injury often report temperature sensitivity. However, its epidemiology and associations with health-related quality of life (HRQOL) are unknown. We aimed to characterize temperature sensitivity and determine its impact on HRQOL to inform patient education after recovery from burn injury. We used the multicenter, longitudinal Burn Model System National Database to assess temperature sensitivity at 6, 12, and 24 months after burn injury. Chi-square and Kruskal-Wallis tests determined differences in patient and injury characteristics. Multivariable, multilevel generalized linear regression models determined the association of temperature sensitivity with Satisfaction with Life (SWL) scale scores and Veterans RAND 12 (VR-12) physical and mental health summary component (MCS) scores. The cohort comprised 637 participants. Two thirds (66%) experienced temperature sensitivity. They had larger burns (12% TBSA, interquartile range [IQR] 4-30 vs 5% TBSA, IQR 2-15; P < .0001), required more grafting (5% TBSA, IQR 1-19 vs 2% TBSA, IQR 0-6; P < .0001), and had higher intensity of pruritus at discharge (11% severe vs 5% severe; P = .002). After adjusting for confounding variables, temperature sensitivity was strongly associated with lower SWL (odds ratio [OR] -3.2, 95% confidence interval [CI] -5.2, -1.1) and MCS (OR -4.0, 95% CI -6.9, -1.2) at 6 months. Temperature sensitivity decreased over time (43% at discharge, 4% at 24 months) and was not associated with poorer HRQOL at 12 and 24 months. Temperature sensitivity is common after burn injury and associated with worse SWL and MCS during the first year after injury. However, temperature sensitivity seems to improve and be less intrusive over time.

Accuracy and Cost-effectiveness of a Telemedicine Triage Initiative for Patients With Suspected Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis.

Abstract: This retrospective analysis assesses triage accuracy and transportation costs associated with implementation of a multidisciplinary store-and-forward telemedicine triage system for patients with suspected Stevens-Johnson syndrome and toxic epidermal necrolysis.

Inpatient and post-discharge outcomes following inhalation injury among critically injured burn patients.

Abstract: Inhalation injury is associated with high inpatient mortality, but the impact of inhalation injury after discharge and on non-mortality outcomes is poorly characterized To address this gap, we evaluated the effect of inhalation injury on postdischarge morbidity, mortality, and hospital readmissions among patients who sustained burn injury, as well as on in-hospital outcomes for context This was a retrospective cohort study of patients with cutaneous fire/flame burns admitted to a burn center intensive care unit from January 1, 2009 to December 31, 2015, with or without inhalation injury Records were linked to statewide hospital admission and vital statistics databases to assess postdischarge outcomes Mixed-effects Poisson regression was used to assess mortality, complications, and readmissions The overall cohort included 830 patients with cutaneous burns; of these, 201 patients had inhalation injury In-hospital mortality was 31% among inhalation injury patients vs 6% in patients without inhalation injury (adjusted OR 235; 95% CI 166-331) Inhalation injury was also associated with an increased risk of in-hospital pneumonia and tracheostomy (P < 05 for all) Inhalation injury was not associated with greater postdischarge mortality, all-cause readmission, readmission for pulmonary diagnosis, or readmission requiring intubation Among the subset of patients with bronchoscopy-confirmed inhalation injury (n = 124; 62% of inhalation injuries), a higher injury grade was not associated with greater inpatient or postdischarge mortality Inhalation injury was associated with increased early morbidity and mortality, but did not contribute to postdischarge mortality or readmission These findings have implications for shared decision making with patients and families and for estimating healthcare utilization after initial hospitalization

Exploring "Return to Productivity" Among People Living With Burn Injury: A Burn Model System National Database Report.

Abstract: Introduction Burn survivors experience barriers to returning to work For those who do return to work, little is known regarding whether they achieve pre-injury productivity (ie, equivalent or gain in income compared to pre-injury income) Identifying patients at risk of not achieving pre-injury productivity is important for targeting services that support this population Methods We extracted occupational and income data through 24 months post-injury from the multi-center, longitudinal Burn Model System National Database Annual income was reported in six groups: 199k Participants were classified by change in income at each follow up (ie, gain, loss, equivalent) Explanatory variables included demographics, injury characteristics, insurance payer, employment status, and job type Multi-level, multi-variable logistic regression was used to model return to productivity Results 453 participants provided complete income data at discharge and follow up Of the 302 participants employed pre-injury, 180 (60%) returned to work within 24 months post-injury Less than half (138) returned to productivity (46% of participants employed pre-injury; 77% of those who returned to work) Characteristics associated with return to productivity included older age (median 469 vs 459 years, OR 103, p=0006), Hispanic ethnicity (24% vs 11%, OR 180, p=0041), burn size >20% TBSA (337% vs 330%, OR 209, p=0045), and post-injury employment (54% vs 26%, OR 341, p Conclusion More than half of employed people living with burn injury experienced loss in productivity within 24 months post-injury Even if they return to work, people living with burn injuries face challenges returning to productivity and may benefit from vocational rehabilitation and/or financial assistance

Burn model system national longitudinal database representativeness by race, ethnicity, gender, and age.

Abstract: INTRODUCTION Representativeness of research populations impacts the ability to extrapolate findings. The Burn Model System (BMS) National Database is one of the largest prospective, longitudinal, multi-center research repositories collecting patient-reported outcomes after burn injury. OBJECTIVE To assess if the BMS Database is representative of the population that is eligible to participate. DESIGN Data on adult burn survivors who were eligible for the BMS Database from 2015 to 2019 were analyzed. SETTING Not applicable. PARTICIPANTS Burn survivors treated at BMS centers meeting eligibility criteria for the BMS Database. Eligibility for the database is based on burn size and receipt of autografting surgery. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURE(S) Race, ethnicity, gender, and age were compared between individuals who did and did not enroll. Regression analysis examined the correlation between demographic characteristics and study enrollment. Additional regression analysis examined the association between enrollment and the intersection of race, ethnicity, and gender. RESULTS A total of 982 adult burn survivors were eligible for the BMS database during the study period. Of those who were eligible, 72.1% Enrolled and 27.9% were Not Enrolled. The Enrolled group included more female and more younger survivors compared to the Not Enrolled group. In regression analyses, Black/African American burn survivors were less likely and individuals identifying as female were more likely to enroll in the BMS Database. Furthermore, White men and women were more likely to enroll compared to Black/African American men and women, and non-Hispanic/Latino men were more likely to enroll compared to Hispanic/Latino men. CONCLUSIONS This study found differences in BMS Database enrollment by race, ethnicity, and gender. Further research is warranted to investigate causes for the disparities found in this study. In addition, strategies are needed to improve enrollment to ensure future representativeness.

Current Practices and Beliefs Regarding Screening Patients with Burns for Acute Stress Disorder and Posttraumatic Stress Disorder: A Survey of the American Burn Association Membership

Abstract: Stress disorders are common after burn injuries and universal screening is recommended. This study describes current screening practices and provider beliefs regarding screening for stress disorders in patients with burns in the US. This was a 31-question survey distributed to the American Burn Association. Sixty-two percent of 121 respondents indicated their institution formally screened for ASD and/or PTSD. The most common reason for not screening was a lack of mental healthcare providers (46%), lack of funding (26%) and lack of time (20%). The timing of screening, the person administering the screening, and the method of screening varied for both pediatric and adult patients. Most respondents (87%) believed screening should be a standard of care, but only 32% were comfortable screening pediatric patients and 62% were comfortable screening adults. While screening for ASD and PTSD is recommended for patients with burns, our study indicates that screening is not a current standard of care. Lack of mental healthcare providers, funding, and time are contributing factors. Among those institutions that screen, a uniform screening practice does not exist.

"Living Well" After Burn Injury: Using Case Reports to Illustrate Significant Contributions From the Burn Model System Research Program.

Abstract: The Burn Model System (BMS) program of research has been funded since 1993 by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The overarching aim of this program is to improve outcomes and quality of life for people with burns in the areas of health and function, employment, and community living and participation. This review reports on BMS contributions that have affected the lives of individuals with a significant burn injury using case reports to associate BMS contributions with recovery. In January 2020, current BMS grantee researchers assessed peer-reviewed BMS publications from 1994 to 2020. Using case report methodology, contributions were linked to three individuals treated at one of the four Burn Model System institutions. With over 25 years of NIDILRR funding, unique BMS contributions to patient recovery were identified and categorized into one of several domains: treatment, assessment measures, sequelae, peer support, employment, and long-term functional outcomes. A second review for significant results of BMS research that add to the understanding of burn injury, pathophysiology, and recovery research was identified and categorized as injury recovery research. The case study participants featured in this review identified select NIDILRR research contributions as having direct, personal benefit to their recovery. The knowledge generation and clinical innovation that this research program has contributed to our collective understanding of recovery after burn injury is considerable. Using case study methodology with three adult burn survivors, we highlight the impact and individual significance of program findings and reinforce the recognition that the value of any clinical research must have relevance to the lives of the study population.

The Impact of Burn Survivor Pre-injury Income and Payer Status on Health-Related Quality of Life.

Abstract: INTRODUCTION The costs required to provide acute care for patients with serious burn injuries are significant. In the US, these costs are often shared by patients. However, the impacts of pre-injury finances on health-related quality of life (HRQL) have been poorly characterized. We hypothesized that lower income and public payers would be associated with poorer HRQL. METHODS Burn survivors with complete data for pre-injury personal income and payer status were extracted from the longitudinal Burn Model System National Database. HRQL outcomes were measured with VR-12 scores at 6, 12, and 24 months post-injury. VR-12 scores were evaluated using generalized linear models, adjusting for potential confounders (e.g., age, gender, self-identified race, burn injury severity). RESULTS 453 participants had complete data for income and payer status. More than one third of BMS participants earned less than $25,000/year (36%), 24% earned $25,000-49,000/year, 23% earned $50,000-99,000/year, 11% earned $100,000-149,000/year, 3% earned $150,000-199,000/year, and 4% earned >$200,000/year. VR-12 mental component (MCS) and physical component summary (PCS) scores were highest for those who earned $150-199k/year (55.8 and 55.8), and lowest for those who earned <$25,000/year (49.0 and 46.4). After adjusting for demographics, payer, and burn severity, 12-month MCS and PCS and 24-month PCS scores were negatively associated with Medicare payer (p<0.05). Low income was not significantly associated with lower VR-12 scores. CONCLUSION There was a peaking relationship between HRQL and middle-class income, but this trend was not significant after adjusting for covariates. Public payers, particularly Medicare, were independently associated with poorer HRQL. The findings might be used to identify those at risk of financial toxicity for targeting assistance during rehabilitation.

Development of proxy and self-report Burn Model System Pediatric Itch Interference scales: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

Abstract: Pruritus is a commonly reported symptom after burn injury Valid and reliable scales to measure itch in pediatric burn survivors are important for treatment and epidemiological studies This study sought to develop psychometrically sound, publicly available self- and proxy-report measures of itch for use in pediatric burn survivors suitable for use in research and clinical practice A panel of burn experts developed a definition of itch interference and a set of parallel self- and proxy-report candidate items that covered important activities affected by itch Candidate items were evaluated in cognitive interviews with pediatric burn survivors (n = 4) and proxies (n = 2) Items were translated to Spanish and administered in both English and Spanish to a sample (N = 264) of pediatric burn survivors and/or their proxy enrolled in the Burn Model System (BMS) longitudinal database The mean age of the pediatric sample was 13 years and average time since burn 5 years The final itch interference measures each included 5 parallel items calibrated using a one-parameter graded response item response theory model, with a mean of 50 representing the average itch interference of the sample Reliability of the scores is excellent between the mean and two standard deviations above Initial analyses provide support for validity of the score Concordance between the self- and proxy-report scores was moderate (ICC = 068) The results support the reliability and validity of the itch scale in children and youth with burn injury The new BMS Pediatric Itch Interference scales are freely and publicly available at https://burndatawashingtonedu/itch

Physical and Psychological Recovery Following Toxic Epidermal Necrolysis: A Patient Survey.

Abstract: Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are acute, life-threatening diseases that cause sloughing of the skin and mucous membranes. Despite improved survival rates, few studies focus on long-term outcomes. We conducted a single-center review of all patients with SJS/TEN admitted from January 2008-2014. SJS/TEN survivors were invited to participate in the validated Veterans RAND 12 Item Health Survey (VR-12) to assess health related quality of life using a mental health composite score (MCS) and physical health component score (PCS). The sample was compared to US norms using one sample two tailed t-tests. A second questionnaire addressed potential long-term medical complications related to SJS/TEN. Of 81 treated subjects, 24 (30%) long-term survivors responded. Participants identified cutaneous sequelae most frequently (79%), followed by nail problems (70%), oral (62%) and ocular (58%) sequalae. Thirty-eight percent rated their quality of life to be "unchanged" to "much better" since their episode of SJS/TEN. The average PCS score was lower than US population norms (mean: 36 vs. 50, p=0.006), indicating persistent physical sequelae from SJS/TEN. These results suggest that SJS/TEN survivors continue to suffer from long-term complications that impair their quality of life and warrant ongoing follow-up by a multidisciplinary care team.

Evaluation of the psychometric properties of the burn specific health scale-brief: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

Abstract: Objective The Burn Specific Health Scale-Brief (BSHS-B) is a commonly used burn specific health outcome measure that includes 40 items across nine subscales. The objective of this study was to use both classical and modern psychometric methods to evaluate psychometric properties of the BSHS-B. Methods Data were collected post burn injury by a multisite federally funded project tracking long term outcomes. We examined dimensionality, local dependence, item fit, and functioning of response categories, homogeneity, and floor and ceiling effects. Items were fit to Item Response Theory models for evaluation. Results A total of 653 adults with burn injury completed the BSHS-B. Factor analyses supported unidimensionality for all subscales, but not for a total score based on all 40 items. All nine of the subscales had significant ceiling effects. Six item pairs displayed local dependence suggesting redundance and 11 items did not fit the Item Response Theory models. At least 15 items have too many response options. Conclusions Results identified numerous psychometric issues with the BSHS-B. A single summary score should never be used for any purpose. Psychometric properties of the scale need to be improved by removing redundant items, reducing response categories and modifying or deleting problematic items. Additional conceptual work is needed to, at a minimum, revise the work subscale and optimally to revisit and clearly define the constructs measured by all the subscales. Additional items are needed to address ceiling effects.