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  • 1
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 41, No. Supplement_1 ( 2020-03-03), p. S160-S161
    Abstract: The Burn Model System (BMS) program of research has been funded since 1994. The overarching aim of this program is to improve outcomes and quality of life for people with disabilities in the areas of: 1) health and function, 2) employment, and 3) community living and participation. This review reports BMS contributions that have positively impacted lives of individuals with a significant burn injury using case report mapping to relate contributions to the recovery of a burn survivor. Methods Peer-reviewed publications derived from BMS data were reviewed in July 2019 for significant contributions as identified by current grantees. Results With 25 years of funding, many unique contributions (see Table) with direct benefit to patient recovery were identified and categorized into one of the following areas: 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 were identified and categorized as Injury and recovery research. Conclusions The knowledge generation and clinical innovation that this program has contributed to our collective understanding of recovery after burn injury is considerable. Using a case study story board, impact of these findings will be illustrated. Applicability of Research to Practice Past contributions help inform future research, particularly in the arena of rehabilitation research.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
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  • 2
    Online Resource
    Online Resource
    Oxford University Press (OUP) ; 2021
    In:  Journal of Burn Care & Research Vol. 42, No. Supplement_1 ( 2021-04-01), p. S8-S9
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 42, No. Supplement_1 ( 2021-04-01), p. S8-S9
    Abstract: Patient-reported outcomes are important for burn injury research and clinical practice. The PROMIS-29 profile has been validated for use in diverse populations and numerous conditions, though not among people living with burn injuries. The purpose of this study was to examine validity and reliability of PROMIS-29 scores in adults with burn injury. Methods Data were provided by adult burn survivors participating in a multi-center longitudinal study of outcomes after burn injury. The PROMIS-29 Profile, which includes 4 items for each domain of physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles, and pain interference, was evaluated for validity and reliability. Floor and ceiling effects, unidimensionality, internal consistency, and reliability were examined. Differential item functioning (DIF) with respect to age, sex, education, race, ethnicity and burn size was assessed using ordinal logistic regression models and McFadden’s pseudo R2-change of ≥2% as critical value. Correlations with other measures (Community Integration Questionnaire, Satisfaction with Life Scale, Post-Traumatic Stress Checklist-Civilian, and Veteran’s Rand-12) and known group differences were examined to assess validity. 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-29 domains showed high internal consistency (Cronbach’s α=0.87–0.97). Substantial portions of the sample reported no symptoms (anxiety [42.6%], depression [50.9%] , fatigue [26.3%], pain [47.7%] ). There was a large ceiling effect on social roles (39.7%) and physical function (43.3%). One-factor confirmatory factor analyses supported unidimensionality for all domains (all CFI & gt;0.95). We found no bias (DIF) across any demographic or clinical groups. Reliability was high ( & gt;0.9) across trait levels for all domains except sleep, which reached moderate reliability ( & gt;0.85). Known-group differences by demographic and clinical characteristics performed as hypothesized except burn size categories, which showed no significant relationship with PROMIS-29 physical function, fatigue, and pain interference scores. Conclusions The results provide strong evidence of reliability and validity of PROMIS-29 scores among adult burn survivors. Reliability of the extreme scores can potentially be increased and the ceiling effects reduced by administering PROMIS-43, which includes 6 items per domain.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2071028-8
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  • 3
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 41, No. Supplement_1 ( 2020-03-03), p. S73-S74
    Abstract: Perception of mental and physical function in adult burn survivors is decreased following injury. Individuals who undergo post-hospitalization reconstructive surgery may have lower Health Related Quality of Life (HRQoL) that is influenced by the severity of their burns. We sought to characterize self-reported health perceptions in burn survivors undergoing surgery post-hospitalization within 24 months of injury. Methods Patient Reported Outcomes Measurement Information System (PROMIS)-29 Profile v2.0 data were collected from participants from a multi-center longitudinal study at 6, 12, and 24 months post-injury. Surgical operations performed within the 24-month follow-up period were classified as: open wound, contracture release or scar revision. PROMIS-29 domain scores were compared for those undergoing surgery (surgical participants) to those who did not (non-surgical participants) using separate linear regression analysis for open wound versus scar revision/contracture release at each of the 3 follow-up time points. Linear regression was adjusted for age, burn size, range of motion limitation, number of operations during acute treatment, and insurance/payer. Results 727 participants provided complete PROMIS-29 data, of which 227 (31.2%) underwent & gt; 1 operative procedure within 24 months post-injury. PROMIS-29 anxiety and depression scores were worse at 6 months post-injury for participants who underwent contracture release and scar revision compared to non-surgical peers (p & lt; 0.05). At 12 months after injury, individuals who underwent open wound surgery post-initial hospitalization reported worse anxiety, depression, and pain interference (p & lt; 0.05). Participants in the contracture release and scar revision categories reported lower PROMIS-29 scores in all domains 24 months after injury (p & lt; 0.05), even after adjusting for confounders. Conclusions Burn-related reconstructive surgery has the potential to improve the lives of patients including promoting functional recovery and improving cosmetic appearance. Our data suggest that participants who undergo reconstruction surgery after hospital discharge report worse self-reported indicators of health compared to participants who do not undergo surgery after adjusting for known confounders. Applicability of Research to Practice Better understanding of determinants of HRQoL following a burn injury provides a potential opportunity to improve burn survivor outcomes and clinical care.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
    detail.hit.zdb_id: 2071028-8
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  • 4
    Online Resource
    Online Resource
    Oxford University Press (OUP) ; 2020
    In:  Journal of Burn Care & Research Vol. 41, No. Supplement_1 ( 2020-03-03), p. S163-S164
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 41, No. Supplement_1 ( 2020-03-03), p. S163-S164
    Abstract: Previous data suggest that disparities exist in access to inpatient rehabilitation following burn injury. We aimed to characterize the association between patient race/ethnicity and discharge disposition across multiple centers. Methods Data were derived from the prospectively maintained Burn Model Systems national database. All participants admitted to one of five participating centers between 1994 and 2019, who survived to discharge with a known disposition, were included. The relationship between patient characteristics, injury factors and discharge to home, a skilled nursing facility (SNF), or inpatient rehabilitation was modeled using multinomial generalized estimating equations. Pre-specified stratified analyses were conducted to examine effect modification. Results We identified 4395 participants who met inclusion criteria. Participants were 74% White non-Hispanic (n=3269), 18% Black non-Hispanic (n=812), 3% Hispanic (n=122), 0.5% Asian (n=24), and 4% Other (n=168). Most were aged 18–64 years (68%, n=2998). Overall, 79% (n=3585) of participants were discharged home, 12% to inpatient rehabilitation (n=534), and 6% to SNF (n=276). After adjustment for patient characteristics and injury factors, there were no differences in discharge destination by race/ethnicity. However, subgroup analyses demonstrated effect modification by both center and burn size. At 2 centers, Black participants were significantly more likely to be discharged to SNF or inpatient rehabilitation (Center 1 OR 1.98, 95% CI 1.02–3.85; Center 2 OR 2.36, 95% CI 1.07–5.19). Similarly, among all participants with & gt;20% TBSA, Black participants were more likely to be discharged to SNF or inpatient rehabilitation (OR 1.38, 95% CI 1.06–1.81). Across all groups, having insurance was associated with discharge to SNF or inpatient rehabilitation (OR 1.68, 95% CI 1.21–2.33). Conclusions Although no overall difference in discharge destination by race was identified, stratified analyses indicate disparities in discharge disposition at the patient and system level. At specific centers, and among those with & gt;20% TBSA injury, Black participants are more likely to be discharged to SNF and inpatient rehabilitation than other ethnic groups. Applicability of Research to Practice Both patient and system level factors are associated with discharge to higher levels of post-discharge care, suggesting that further characterization of these factors is warranted. Such data can inform interventions and policy changes aimed at ensuring equitable access to appropriate post-discharge care.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
    detail.hit.zdb_id: 2071028-8
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  • 5
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 41, No. Supplement_1 ( 2020-03-03), p. S19-S20
    Abstract: Feeling a part of community and participating in social life are important aspects of overall quality of life. Burn survivors consider community reintegration one of the most important issues affecting their recovery. Integration, including social integration, has been studied in this population, but longitudinal analyses to examine factors associated with successful integration are lacking. The current study aims to assess variables associated with social integration during the first two years post-burn. Methods Adult (18+ years) burn survivors enrolled in the Burn Model System national longitudinal database responded to questionnaires at hospital discharge and 6-, 12-, and 24-months postburn. Social integration was assessed at all follow-up timepoints using the Community Integration Questionnaire Social Integration Component Scale, which has a possible range of scores from 0 (no community integration) to 12 (excellent community integration). To examine variables associated with social integration over time, linear mixed effect models utilizing generalized least squares with maximum likelihood and robust standard errors were used. Independent variables in the model included age, sex, % total body surface area (TBSA) burned, race/ethnicity, living status at time of injury, facial burn, history of psychiatric treatment preburn, employment at follow-up assessment, and SF-12 or VR-12 mental health component scores at the time of each follow-up assessment. Results Data from 1,848 adult burn survivors were included in the analyses. Average age of the survivors was 42.9 years, 74.0% were male, 77.7% were white, 47.0% were married or living common-law with a partner, and mean total body surface area burned was 18.2%. Factors associated with better social integration over time included younger age, female sex, lower TBSA ( & lt; 40%) burn size, white/non-Hispanic race, no preburn psychiatric treatment, postburn employment, and better mental health. Time was not a significant predictor, indicating that social integration scores remain relatively stable over the 24-month follow-up period. Conclusions We identified several factors that contribute to greater social integration including age, gender, burn size, race/ethnicity, employment, and mental health, with the association between age, gender, and employment status and community integration a novel finding in this population. Applicability of Research to Practice This study suggests that while most factors associated with social integration are not modifiable, interventions aimed at improving mental health and helping burn survivors return to work could also improve self-reported social integration.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
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  • 6
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 42, No. 2 ( 2021-03-04), p. 212-219
    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 = 0.68). 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://burndata.washington.edu/itch.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
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  • 7
    In: Burns, Elsevier BV, Vol. 47, No. 1 ( 2021-02), p. 42-51
    Type of Medium: Online Resource
    ISSN: 0305-4179
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2021
    detail.hit.zdb_id: 2025040-X
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  • 8
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 40, No. 1 ( 2019-01-01), p. 21-28
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2019
    detail.hit.zdb_id: 2071028-8
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  • 9
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 42, No. 3 ( 2021-05-07), p. 398-407
    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.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2071028-8
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  • 10
    Online Resource
    Online Resource
    Oxford University Press (OUP) ; 2020
    In:  Journal of Burn Care & Research Vol. 41, No. Supplement_1 ( 2020-03-03), p. S126-S127
    In: Journal of Burn Care & Research, Oxford University Press (OUP), Vol. 41, No. Supplement_1 ( 2020-03-03), p. S126-S127
    Abstract: Research participants often receive little to no feedback after participating in a research study. We sought to better understand what information burn survivors might want to receive based on their participation in research, and what formats might be most useful. Participant preferences will be used to develop summary reports based on their responses to survey questions and can inform patient information dissemination in burn clinics. Methods Adult burn survivors and caregivers/partners participated in focus groups. Multiple formats of reports on health domains, such as pain, depression and itch were discussed. All participants were asked whether they would be interested in receiving a summary of the responses they provided, even if their answers suggested problems (e.g., high depressive symptoms). Understandability of the information, preferred format (graph, table, list), and opinions about the formats were discussed. Audio recordings were transcribed, anonymized and summarized. Results: A total of 11 burn survivors and 4 caregivers/partners participated in three focus groups at different locations in the U.S. Average age of the survivors at the time of the focus groups was 49 years, 62% were male and 71% were white. Mean burn size was 50% and 75% of participants had a fire/flame etiology of injury. Burn survivors and their partners unanimously wanted to receive reports about their health after study participation, regardless of whether the feedback was positive or negative. Longitudinal graphs were too complex and tables were more understandable. The preferred format listed the health domains in which the burn survivor was doing well and the areas of concern, with optional links to more details. Burn survivors found the links to online resources helpful and suggested that information about drugs, alcohol, and PTSD be provided to all regardless of a problem in these domains. Most survivors were not concerned about the potential negative impact of reports indicating continued health problems but suggested that any negative feedback should be provided no sooner than 1-year post injury. Conclusions: Burn survivors are very interested in receiving summary reports of their responses to research surveys. Most would share the results with their caregivers and only a few would share it with care providers. Simple displays and messaging are essential for the reports to be useful. More research is needed to evaluate whether the reports can aid burn survivors in their recovery and to develop strategies for reaching out to survivors in distress. Applicability of Research to Practice Results help clinicians and researchers provide understandable health information to patients and encourage patient/family member engagement in clinical care or research.
    Type of Medium: Online Resource
    ISSN: 1559-047X , 1559-0488
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
    detail.hit.zdb_id: 2071028-8
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