Molly Marino

Measuring the Social Impact of Burns on Survivors.

Many burn survivors experience social challenges throughout their recovery. Measuring the social impact of a burn injury is important to identify opportunities for interventions. The aim of this study is to develop a pool of items addressing the social impact of burn injuries in adults to create a self-reported computerized adaptive test based on item response theory. The authors conducted a comprehensive literature review to identify preexisting items in other self-reported measures and used data from focus groups to create new items. The authors classified items using a guiding conceptual framework on social participation. The authors conducted cognitive interviews with burn survivors to assess clarity and interpretation of each item. The authors evaluated an initial pool of 276 items with burn survivors and reduced this to 192 items after cognitive evaluation by experts and burn survivors. The items represent seven domains from the guiding conceptual model: work, recreation and leisure, relating to strangers, romantic, sexual, family, and informal relationships. Additional item content that crossed domains included using self-comfort and others’ comfort with clothing, telling one’s story, and sense of purpose. This study was designed to develop a large item pool based on a strong conceptual framework using grounded theory analysis with focus groups of burn survivors and their caregivers. The 192 items represent 7 domains and reflect the unique experience of burn survivors within these important areas of social participation. This work will lead to developing the Life Impact Burn Recovery Evaluation profile, a self-reported outcome measure.

Development of a conceptual framework to measure the social impact of burns

Measuring community reintegration following burn injury is important to assess the efficacy of therapies designed to optimize recovery. This project aims to develop and validate a conceptual framework for understanding the social impact of burn injuries in adults. The framework is critical for developing the item banks used for a computerized adaptive test. We performed a comprehensive literature review and consulted with clinical experts and burn survivors about social life areas impacted by burn injury. Focus groups with burn survivors and clinicians were conducted to inform and validate the framework. Transcripts were coded using grounded theory methodology. The World Health Organization’s International Classification of Functioning, Disability and Health, was chosen to ground the content model. The primary construct identified was social participation, which contains two concepts: societal role and personal relationships. The subdomains chosen for item development were work, recreation and leisure, relating with strangers, and romantic, sexual, family, and informal relationships. Qualitative results strongly suggest that the conceptual model fits the constructs for societal role and personal relationships with the respective subdomains. This conceptual framework has guided the implementation of a large-scale calibration study currently underway which will lead to a computerized adaptive test for monitoring the social impacts of burn injuries during recovery.

Work-related measures of physical and behavioral health function: Test-retest reliability

BACKGROUND The Work Disability Functional Assessment Battery (WD-FAB), developed for potential use by the US Social Security Administration to assess work-related function, currently consists of five multi-item scales assessing physical function and four multi-item scales assessing behavioral health function; the WD-FAB scales are administered as Computerized Adaptive Tests (CATs). OBJECTIVE The goal of this study was to evaluate the test-retest reliability of the WD-FAB Physical Function and Behavioral Health CATs. METHODS We administered the WD-FAB scales twice, 7-10 days apart, to a sample of 376 working age adults and 316 adults with work-disability. Intraclass correlation coefficients were calculated to measure the consistency of the scores between the two administrations. Standard error of measurement (SEM) and minimal detectable change (MDC90) were also calculated to measure the scales precision and sensitivity. RESULTS For the Physical Function CAT scales, the ICCs ranged from 0.76 to 0.89 in the working age adult sample, and 0.77-0.86 in the sample of adults with work-disability. ICCs for the Behavioral Health CAT scales ranged from 0.66 to 0.70 in the working age adult sample, and 0.77-0.80 in the adults with work-disability. The SEM ranged from 3.25 to 4.55 for the Physical Function scales and 5.27-6.97 for the Behavioral Health function scales. For all scales in both samples, the MDC90 ranged from 7.58 to 16.27. CONCLUSION Both the Physical Function and Behavioral Health CATs of the WD-FAB demonstrated good test-retest reliability in adults with work-disability and general adult samples, a critical requirement for assessing work related functioning in disability applicants and in other contexts.

Improving measures of work-related physical functioning

Purpose To expand content of the physical function domain of the Work Disability Functional Assessment Battery (WD-FAB), developed for the US Social Security Administration’s (SSA) disability determination process.MethodsNewly developed questions were administered to 3532 recent SSA applicants for work disability benefits and 2025 US adults. Factor analyses and item response theory (IRT) methods were used to calibrate and link the new items to the existing WD-FAB, and computer-adaptive test simulations were conducted.ResultsFactor and IRT analyses supported integration of 44 new items into three existing WD-FAB scales and the addition of a new 11-item scale (Community Mobility). The final physical function domain consisting of: Basic Mobility (56 items), Upper Body Function (34 items), Fine Motor Function (45 items), and Community Mobility (11 items) demonstrated acceptable psychometric properties.ConclusionsThe WD-FAB offers an important tool for enhancement of work disability determination. The FAB could provide relevant information about work-related functioning for initial assessment of claimants; identifying denied applicants who may benefit from interventions to improve work and health outcomes; enhancing periodic review of work disability beneficiaries; and assessing outcomes for policies, programs and services targeting people with work disability.

Improving Assessment of Work Related Mental Health Function Using the Work Disability Functional Assessment Battery (WD-FAB)

Purpose To improve the mental health component of the Work Disability Functional Assessment Battery (WD-FAB), developed for the US Social Security Administration’s (SSA) disability determination process. Specifically our goal was to expand the WD-FAB scales of mood & emotions, resilience, social interactions, and behavioral control to improve the depth and breadth of the current scales and expand the content coverage to include aspects of cognition & communication function. Methods Data were collected from a random, stratified sample of 1695 claimants applying for the SSA work disability benefits, and a general population sample of 2025 working age adults. 169 new items were developed to replenish the WD-FAB scales and analyzed using factor analysis and item response theory (IRT) analysis to construct unidimensional scales. We conducted computer adaptive test (CAT) simulations to examine the psychometric properties of the WD-FAB. Results Analyses supported the inclusion of four mental health subdomains: Cognition & Communication (68 items), Self-Regulation (34 items), Resilience & Sociability (29 items) and Mood & Emotions (34 items). All scales yielded acceptable psychometric properties. Conclusions IRT methods were effective in expanding the WD-FAB to assess mental health function. The WD-FAB has the potential to enhance work disability assessment both within the context of the SSA disability programs as well as other clinical and vocational rehabilitation settings.

Long-Term Social Reintegration Outcomes for Burn Survivors With and Without Peer Support Attendance: A Life Impact Burn Recovery Evaluation (LIBRE) Study

OBJECTIVE To examine differences in long-term social reintegration outcomes for burn survivors with and without peer support attendance. DESIGN Cross-sectional survey. SETTING Community-dwelling burn survivors. PARTICIPANTS Burn survivors (N=601) aged ≥18 years with injuries to ≥5% total body surface area (TBSA) or burns to critical areas (hands, feet, face, or genitals). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The Life Impact Burn Recovery Evaluation Profile was used to examine the following previously validated 6 scale scores of social participation: Family and Friends, Social Interactions, Social Activities, Work and Employment, Romantic Relationships, and Sexual Relationships. RESULTS Burn support group attendance was reported by 330 (55%) of 596 respondents who responded to this item. Attendees had larger burn size (43.4%±23.6% vs 36.8%±23.4% TBSA burned, P<.01) and were more likely to be >10 years from injury (50% vs 42.5%, P<.01). Survivors who attended at least 1 support group scored significantly higher on 3 of the scales: Social Interactions (P=.01), Social Activities (P=.04), and Work and Employment (P=.05). In adjusted analyses, peer support attendance was associated with increased scores on the Social Interactions scale, increasing scores by 17% of an SD (95% confidence interval, 1%-33%; P=.04). CONCLUSIONS Burn survivors who reported peer support attendance had better social interaction scores than those who did not. This is the first reported association between peer support group attendance and improvements in community reintegration in burn survivors. This cross-sectional study prompts further exploration into the potential benefits of peer support groups on burn recovery with future intervention studies.

Developing Item Response Theory–Based Short Forms to Measure the Social Impact of Burn Injuries

OBJECTIVE To develop self-reported short forms for the Life Impact Burn Recovery Evaluation (LIBRE) Profile. DESIGN Short forms based on the item parameters of discrimination and average difficulty. SETTING A support network for burn survivors, peer support networks, social media, and mailings. PARTICIPANTS Burn survivors (N=601) older than 18 years. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The LIBRE Profile. RESULTS Ten-item short forms were developed to cover the 6 LIBRE Profile scales: Relationships with Family & Friends, Social Interactions, Social Activities, Work & Employment, Romantic Relationships, and Sexual Relationships. Ceiling effects were ≤15% for all scales; floor effects were <1% for all scales. The marginal reliability of the short forms ranged from .85 to .89. CONCLUSIONS The LIBRE Profile-Short Forms demonstrated credible psychometric properties. The short form version provides a viable alternative to administering the LIBRE Profile when resources do not allow computer or Internet access. The full item bank, computerized adaptive test, and short forms are all scored along the same metric, and therefore scores are comparable regardless of the mode of administration.

The impact of work-related burn injury on social reintegration outcomes: A Life Impact Burn Recovery Evaluation (LIBRE) study

OBJECTIVE To examine differences in long-term social reintegration outcomes for burn survivors with and without work-related injuries. DESIGN Cross-sectional survey. SETTING Community-dwelling burn survivors. PARTICIPANTS Burn survivors (N=601) aged ≥18 years with injuries to ≥5% total body surface area or burns to critical areas (hands, feet, face, or genitals). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The Life Impact Burn Recovery Evaluation Profile was used to examine the following previously validated 6 scale scores of social participation: Family and Friends, Social Interactions, Social Activities, Work and Employment, Romantic Relationships, and Sexual Relationships. RESULTS Older participants, those who were married, and men were more likely to be burned at work (P<.01). Burn survivors who were injured at work scored significantly lower on the Work and Employment scale score after adjusting for demographic and clinical characteristics (P=.01). All other domain scale scores demonstrated no significant differences between groups. Individuals with work-related injuries scored significantly worse on 6 of the 19 items within the Work and Employment scale (P<.05). These individuals were more likely to report that they were afraid to go to work and felt limited in their ability to perform at work. CONCLUSIONS Burn survivors with work-related injuries report worse work reintegration outcomes than those without work-related injuries. Identification of those at higher risk for work reintegration challenges after burn injury may enable survivors, providers, employers, and insurers to better use appropriate resources to promote and target optimal employment outcomes.