The role of personal social networks in social participation for adult burn survivors: A cohort study.

Introduction A personal social network is the set of family, friends and acquaintances surrounding an individual and their interpersonal connections. Personal social networks have shown close associations with an individual’s physical health, mental wellbeing, and social outcomes. People with burn injury commonly experience social participation challenges for years. The association between recovery outcomes and personal social network is unclear. Thus, this study aims to examine the relationship between personal social network characteristics and social participation outcomes after burn injury. Methods This is a 6-month prospective study of adult burn survivors living in the community. Participants completed the Personal Network Survey (PERSNET) at baseline, 3-month, and 6-month and the Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities short forms weekly. The PERSNET is an assessment of personal social network and is quantified by two categories of metrics. Network structure (network size, density, and effective network size) describes the arrangement of social connections while network composition (demographic characteristics, relationship type and support type) are the characteristics of network members. The LIBRE is an assessment to measure social participation after burn injury. Multilevel models with random slope and intercept were performed to examine the associations between PERSNET metrics and LIBRE assessment results with adjusting the demographic and burn injury variables. Results A total of 23, 21, and 18 participants completed both the PERSNET and LIBRE assessments at baseline, 3-month, and 6-month, respectively. Their average age was 49 years and 70% of them were female with an average 24 years after burn injury and 45% total body surface area burned. The results showed that friends and family were the major relationship types, while camaraderie and emotion were the major support types. Networks with more friends, networks with more persons, and networks with higher effective network size (a network characterized by alters who generally do not know each other) were each associated with the lower scores of LIBRE Social Interactions (worse social participation) (p< 0.05), respectively. Conclusions The study findings preliminarily indicate that personal social network structure and relationship type are related to burn survivors’ social participation outcomes. Applicability of Research to Practice This study may inform future use of personal social network to identify burn survivors who are prone to social participation challenges. Funding for the Study This work was supported by the Stepping Strong Center, Spaulding Research Institute and National Institute on Disability, Independent Living, and Rehabilitation Research.

Introduction The Life Impact Burn Recovery Evaluation (LIBRE) Computer Adaptive Test (CAT) Profile measures social integration and participation of burn survivors. However, it is not translated into Spanish. A short form version of the LIBRE in English includes 6 domains and 10 items per scale and demonstrates psychometrically sound reliable and valid assessments. We translated from English to Spanish a cultural adaptation of the LIBRE fixed short form (LIBRE-SF). Methods Translation methodology followed the ISOQOL and COSMIN guidelines. For test-retest reliability, the questionnaire was administered on 2 occasions at least two weeks apart and included the intraclass correlation coefficients (ICC) Internal consistency reliability with Cronbach Alpha Statistic were applied for results at baseline. Concurrent validity was assessed using the WHODAS 36. Both questionaries were applied in burn patients without open wounds and independent in their daily activities. Results The translated LIBRE-SF was applied to 100 patients with burns. We used Cronbach´s Alpha statistics for internal consistency reliability; Intraclass correlation coefficients (ICC) between individual scores obtained in the first and second survey for test-retest reliability (table 1) and Spearman Rho for correlation with WHODAS 2.0 scale. LIBRE-SF showed a credible level of reliability with Cronbach Alpha Statistic ranged from 0.80 to 0.92, ICC’s ranged between 0.83 and 0.95. Spearman Rho correlations with the WHODAS were significant at the P< 0.05 level for social activities, social interactions and work and employment. Conclusions WHODAS assesses more general aspects of function and disability, while LIBRE has more specific focus on social participation after a burn injury. WHODAS is not designed to specifically measure the unique social challenges faced by burn survivors, such as body image or intimate relationships, where the LIBRE is more specific. WHODAS addresses social participation in a broad way and does not consider the psychological and emotional factors that are central to a burn survivor’s experience. It is likely that some questions were not optimally adapted to the cultural or linguistic context of Spanish speakers and double negative was one of the characteristics of the questions with the lowest internal consistency reliability.Conclusion: The Spanish version is highly reliable, suggesting that patients respond consistently with an ICC between 0.83-0.95, and could be used to assess the emotional needs of burn survivors in Spanish speaking communities, and direct the proper treatment. Applicability of Research to Practice A Spanish reliable QoL Scale, would help us to assess and direct treatment. Funding for the Study N/A

Work integration and retention after burn injury is a key outcome. Little is known about how burn survivors reintegrate into the workplace. This article compares scores on the Life Impact Burn Recovery Evaluation (LIBRE) Profile, a burn-specific measure of social participation, between burn survivors and general population samples, focusing on the Work and Employment domain. Convenience samples of burn survivors and the U.S. population were obtained. Differences in demographic and clinical characteristics and LIBRE Profile scores were assessed. To examine work and employment, we compared family and friends, social activities, and social interactions scores among working vs nonworking burn survivors. Six hundred and one burn survivors (320 employed) and 2000 U.S. residents (1101 employed) were surveyed. The mean age (P = .06), distributions of sex (P = .35), and Hispanic ethnicity (P = .07) did not differ significantly. Distributions of race (P < .01) and education (P = .01) differed significantly. The burn survivor sample had higher scores, demonstrating higher participation, for work and employment (mean = 49.5, SD = 9.42) than the general sample (mean = 46.94, SD = 8.94; P < .0001), which persisted after adjusting for demographic characteristics. Scores on the three domains administered to all respondents were higher (P < .001) for working than nonworking burn survivors. Distributions indicated higher social participation in the burn survivor sample than the general sample. Possible explanations include sample bias; resilience, posttraumatic growth, or response-shift of survivors; and limitations of using items in the general sample. Working burn survivors scored higher than those not working. Future work can explore factors that mediate higher scores and develop interventions.

Measuring the impact burn injuries have on social participation is integral to understanding and improving survivors' quality of life, yet there are no existing instruments that comprehensively measure the social participation of burn survivors. This project aimed to develop the Life Impact Burn Recovery Evaluation Profile (LIBRE), a patient-reported multidimensional assessment for understanding the social participation after burn injuries. 192 questions representing multiple social participation areas were administered to a convenience sample of 601 burn survivors. Exploratory factor analysis and confirmatory factor analysis (CFA) were used to identify the underlying structure of the data. Using item response theory methods, a Graded Response Model was applied for each identified sub-domain. The resultant multidimensional LIBRE Profile can be administered via Computerized Adaptive Testing (CAT) or fixed short forms. The study sample included 54.7% women with a mean age of 44.6 (SD 15.9) years. The average time since burn injury was 15.4years (0-74years) and the average total body surface area burned was 40% (1-97%). The CFA indicated acceptable fit statistics (CFI range 0.913-0.977, TLI range 0.904-0.974, RMSEA range 0.06-0.096). The six unidimensional scales were named: relationships with family and friends, social interactions, social activities, work and employment, romantic relationships, and sexual relationships. The marginal reliability of the full item bank and CATs ranged from 0.84 to 0.93, with ceiling effects less than 15% for all scales. The LIBRE Profile is a promising new measure of social participation following a burn injury that enables burn survivors and their care providers to measure social participation.

The Life Impact Burn Recovery Evaluation (LIBRE) Profile was developed to assess long-term social participation outcomes for adult burn survivors. Traditional clinical burn recovery outcomes focus on early physical complications and psychosocial issues, but there is a growing need for quantitative measures of long-term recovery that assess experiences deemed relevant to burn survivors. The LIBRE Profile, co-produced with input from burn survivors and clinicians and grounded in the World Health Organization's International Classification of Functioning, Disability and Health (WHO-ICF) conceptual framework, addresses the measurement gap by focusing on six domains of social participation: social interactions, social activities, family and friends, work and employment, romantic relationships, and sexual relationships. The LIBRE Profile uses Item Response Theory (IRT) and computer adaptive tests (CAT) to minimize respondent burden while maintaining accuracy. Psychometric evaluations have validated the LIBRE Profile as a reliable and clinically useful tool that can help clinicians and burn survivors monitor recovery and inform personalized care. Future work includes LIBRE Profile development for pediatric populations, further international language translations, and the development of an APP for broader personal and clinical use. This paper provides a comprehensive overview of the LIBRE Profile's development, psychometric foundations, and future directions, advocating for its adoption in clinical practice and burn survivor communities.

Introduction The creation of individualized treatment plans that address social participation in burn survivors requires an understanding of the expected changes over time from the original burn injury. The Life Impact Burn Recovery Evaluation (LIBRE) Profile is a patient-reported outcome measure for social participation after burn injury. Visual representation of expected change over time of a population is achieved through the development of trajectory curves (TCs), serving as benchmarks for recovery. In order to optimize the implementation of LIBRE Profile TCs, a literature review was conducted to examine utilization of TCs in other clinical settings. Methods A review of studies published from 2014–2019, demonstrating TCs as growth or treatment models in clinical settings, was performed. Literature was identified by searching “trajectory curves,” “trajectory models,” and “clinic” or “clinical” in PubMed. Articles focusing on three areas of inquiry were included: 1) measuring individual patient growth; 2) comparing progress for similar patient cohorts to provide contextualized reference for personal growth; 3) predictive medicine/risk assessment for interventional care in various conditions. Results The initial literature review identified 141 manuscripts. A total of 107 were excluded and 34 manuscripts were reviewed and categorized based on the three areas of inquiry (Figure 1; Table 1). Positive results from TCs in all areas of inquiry were noted in 22 of the 34 the chosen studies. General trends for each area of inquiry include: an increased ability for parents and clinicians to track individual patient progress in what was primarily anthropometric studies; articles relating to comparative cohort tracking show that trajectory-driven analytical approaches offer displays of progress across similar clinical groups of recovery for given conditions. Use of TCs in predictive care or risk assessment typically relate to acute conditions such as asthma, traumatic brain injury, or degenerative conditions (neurocognitive or musculoskeletal). For the most part, these diagnoses depict a positive trend for clinicians to identify future outcomes using fitted trajectories. Conclusions These findings support the clinical use of trajectory curves to present patient-specific, cohort-relative, and predictive treatment for outcome-based results post-burn for burn survivors. Applicability of Research to Practice Future research will assess the use of LIBRE Profile recovery trajectories as benchmarks for optimization of social participation outcomes.

IntroductionSocioeconomic factors are recognized as important social determinants of health. Data however are sparse describing the relationship between socioeconomic status and long term burn outcomes. This study aims to examine associations between community-level socioeconomic status and social participation outcomes in burn survivors.MethodsData was obtained from the Life Impact Burn Recovery Evaluation (LIBRE) Journey study that assesses longitudinal social participation outcomes of community dwelling burn survivors. Subjects were linked to the Distressed Communities Index (DCI), which combines seven indicators into a metric that depicts community economic well-being. Participants were categorized by time since burn (< 5, 5-15, ≥15 years). Linear regression models examined associations between DCI (zip code and county levels) and LIBRE domain scores (Family & Friends, Social Interactions, Social Activities, Work & Employment).ResultsThe study included 314 burn survivors, (mean age 44.1 years; 61.0% female; 48.6% married; 82.8% white). The population was distributed among the time since injury categories (< 5: 35.8%, 5-15: 27.5%, ≥15: 36.7%). Approximately 18% of subjects were categorized in the “at risk” or “distressed” DCI categories. For survivors less than five years from burn, a DCI score increase of 1 standard deviation (worse socioeconomic status) at the zip code level was associated with decreased Family & Friends and Social Activity scores of 2.6 (p=.01) and 2.0 points (p=0.04), respectively (small effect sizes). This relationship was even stronger when controlling for sociodemographic factors. In regression analysis, survivors within the first five years from injury living in “at risk” or “distressed” communities showed worse Family & Friend scores by 6.5 points compared to those living in “prosperous” communities, even after adjusting for age, gender, race, ethnicity, education, and marital status (p=0.04; moderate effect size). There were no significant associations between DCI and LIBRE domain scores for survivors assessed beyond 5 years from injury.ConclusionsSocial participation outcomes were worse in burn survivors who lived in socioeconomically disadvantaged neighborhoods. Burn survivors who face socioeconomic challenges may need additional support to address social disparities to improve outcomes.

Introduction Following burn survivors in the community is critical to understand their problems and needs. Physical activities automatically recorded by smartphones have shown to be a convenient and burdenless method for post-discharge assessment. However, it is unclear if physical activities are associated with burn survivors’ physical and psychosocial outcomes. This study aims to examine the relationship between smartphone-tracked physical activities and scale-based outcomes. Methods Adult burn survivors living in the community were included in this study. A mobile application was downloaded to participants’ smartphones and automatically recorded daily number of steps, travel miles and activity minutes. Participants received weekly surveys assessing pain (Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Intensity and Interference), depression (Patient Health Questionnaire (PHQ-8)), anxiety (PROMIS Anxiety) and social participation (Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities). Correlation coefficients between physical activities and survey results were examined and interpreted as “very weak” (|r|≤0.19), “weak” (0.20≤|r|≤0.39), “moderate” (0.40≤|r|≤0.59), “strong” (0.60≤|r|≤0.79), and “very strong” (0.80≤|r|≤1.00). Results There were 24 burn survivors with an average of 24 years after injury included in this study. The 180-week data collected between November 2021 and August 2022 was analyzed. Daily number of steps, travel miles and activity minutes separately showed relationships with PROMIS Pain Intensity (r=-0.312, p&amp;lt; 0.001; r=-0.247, p=0.001; r=-0.239, p=0.001), PROMIS Pain Interference (r=-0.375, p&amp;lt; 0.001; r=-0.318, p&amp;lt; 0.001; r=-0.291, p&amp;lt; 0.001), PHQ-8 (r=-0.403, p&amp;lt; 0.001; r=-0.357, p&amp;lt; 0.001; r=-0.311, p&amp;lt; 0.001), PROMIS Anxiety (r=-0.310, p&amp;lt; 0.001; r=-0.209, p=0.007; r=-0.150, p=0.054), LIBRE Social Interactions (r=0.272, p&amp;lt; 0.001; r=0.291, p&amp;lt; 0.001; r=0.328, p&amp;lt; 0.001) and LIBRE Social Activities (r=0.381, p&amp;lt; 0.001; r=0.414, p&amp;lt; 0.001; r=0.404, p&amp;lt; 0.001). Conclusions Daily number of steps demonstrated a moderate correlation with depression while both daily travel miles and activity minutes showed moderate correlations with social participation. The results support that smartphone-tracked physical activities are related to burn survivors’ psychosocial outcomes. Applicability of Research to Practice This study may inform future use of smartphone-tracked physical activities to understand and track burn recovery and ultimately improve care.

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. Methods employed an iterative, modified-Delphi approach, and bookmarking to review calibrated item banks. Analyses (using calibration sample data and repeated in a validation sample) examined means, SDs, and sample distributions for each level. Analyses of variance examined score differences between levels. The panel developed descriptions for each established level. Initial cut-points resulted in four levels for five domains (Social Activities, Social Interactions, Romantic Relationships, Sexual Relationships, and Work & Employment) and five levels for the sixth domain (Relationships with Family & Friends). Comparisons demonstrated significant differences between level mean scores for all domains (P < .05) except Relationships with Family & Friends. Based on follow-up surveys, Relationships with Family & Friends score cut-points were adjusted to identify four levels with significant score differences between all levels. Panelists reached consensus for level descriptions. Score cut-points and descriptions identify different levels of social participation, providing a relevant context for interpreting LIBRE Profile numeric scores. LIBRE Profile Social Participation levels will help clinicians and persons with burn injury interpret LIBRE Profile numeric scores and promote use of this important new assessment.

Social and emotional recovery from burn injury is a complex process impacted by both clinical and social factors. Because level of education (LOE) has been correlated to overall health, health outcomes, and life expectancy, we questioned whether LOE might be associated with successful social recovery after burn injury. The Life Impact Burn Recovery Evaluation (LIBRE) data set served as a novel tool to explore this question. The LIBRE project is a collaborative effort designed to provide a clinical yardstick for social reintegration among burn survivors. After institutional review board approval, 601 burn survivor respondents, aged 18 or over with >5% TBSA burn were surveyed and a six-scale, 126-item LIBRE Profile was derived from their responses. LOE was collapsed into four categories ranging from less than high school equivalency certificate to graduate degree. Impact of burn injury on subsequent LOE was examined by splitting the sample into those burned at age 30 years or less and those burned at greater than 30 years of age. Regression models were run to estimate associations between education and scale scores with adjustment for age at injury, sex, marital status, work status, TBSA, and time since burn. Regression models were run on the entire cohort and then stratified by age at burn injury (≤30 vs >30). Among all subjects, we found an association between LOE and social recovery as measured by LIBRE scale scores. This association was contributed entirely from the cohort burned at age 30 or less: for those burned at greater than age 30, there was no association between LOE and social recovery. Of particular interest, the distribution of LOE among those burned at ≤ 30 was very similar to LOE distribution in both millennials and in the U.S. population at large. LOE appears to be associated with social recovery for those burned at younger ages but not for those burned at over age 30. More importantly, burn injury during schooling may have no impact on a survivor's educational trajectory since distribution of LOE in our ≤30 cohort mirrors that of the general population. LOE and age at burn injury may provide a quick screen for survivors at risk of difficult social reintegration, allowing providers to target those at risk with additional peer support and counseling.

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.

IntroductionPatient-reported outcome measures for burn survivors have primarily focused on physical and psychological aspects, with few tools assessing social participation. This study developed a Japanese version of the Life Impact Burn Recovery Evaluation Profile Short Form (LIBRE Profile-SF) to measure social participation among burn survivors in Japan.MethodsThe translation followed the Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes Measures. Two native Japanese speakers independently conducted forward translations into Japanese, which were then compared and merged into a single forward version. Backward translation was independently done by two Japanese researchers, one of whom was a second-language English speaker. The original source and the backward translation were then compared by the instrument developer and translators, and discrepancies were discussed. After the draft of Japanese version was developed, cognitive debriefing interviews were conducted with 10 burn survivors. Participants were aged 18 years or older, resided in Japan, could understand Japanese, and had sustained burns covering 5%–20% of total body surface area or affecting the face, hands, feet, or perineum. Interviews were conducted face-to-face or via telephone.ResultsSeveral points were discussed during the Japanese translation process. The English word “comfortable” sometimes means “not bothered” in Japanese. Additionally, the phrases “be limited” and “cannot be” often share similar expressions in Japanese. Cognitive debriefing interviews were conducted, with 60% female participants and 60% of the participants being 65 years or older. Face-to-face interviews accounted for 70% of the total. Feedback highlighted difficulties in understanding double negatives and literal translations. However, these were not revised, as they were understandable and appropriate. After correcting typographical and grammatical errors, the finalized Japanese version of the LIBRE Profile-SF was completed.ConclusionsParticipants reported difficulties understanding the text, despite the translation aiming preserve original meaning. Adaptations of the LIBRE Profile-SF from other countries also noted the unfamiliarity with double negative expressions and time required to comprehend them. Thus, language differences can significantly impact the interpretation of questionnaires.Applicability of Research to PracticeThe reliability and validity of this questionnaire will be evaluated with 100 participants. This study aims to support the clinical application of the Japanese version of the LIBRE Profile-SF, facilitating better patient reintegration.Funding for the StudyN/A

Social interactions and activities are key components of social recovery following burn injuries. The objective of this study is to determine the predictors of these areas of social recovery. This study provides a secondary analysis of a cross-sectional survey of adult burn survivors. The Life Impact Burn Recovery Evaluation-192 was administered to 601 burn survivors for the field-testing of the Life Impact Burn Recovery Evaluation Profile. Survivors aged 18 years and older with injuries ≥5% total BSA or burns to critical areas (hands, feet, face, or genitals) were eligible to participate. Multivariate linear regression analyses were used to determine predictors of the Social Activities and Social Interactions scale scores. A total of 599 people completed the Social Interactions and Social Activities scales. Of these, 77% identified as White Non-Hispanic, 55% were female, 55% were unmarried, and 80% had burns to critical areas. Participants had a mean age of 45 years, a mean time since burn injury of 15 years, and a mean burn size of 41% total BSA. Younger age (P < .01) and being married/living with a significant other (P ≤ .01) were associated with higher Social Activities and Social Interactions scale scores. Individual item responses reveal that survivors had lower scores on items related to participating in outdoor activities (30.4%) or feeling uncomfortable with their appearance (32.4% report dressing to avoid stares). Social interactions and activities are long-term challenges for burn survivors. It is important for clinicians to identify patients who may struggle with social recovery in order to focus on future community-based interventions.

The relationship between social participation and health-related quality of life two years after burn injury: A Burn Model System national database study.

Burn survivors injured as children exhibit resilience in long-term community integration outcomes: A life impact burn recovery evaluation (LIBRE) study