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 PARTICIPANTS: 24 adult burn survivors INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: Symptoms and social participation outcomes were assessed weekly using smartphone surveys, including symptoms of pain (Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Intensity and Pain Interference), anxiety (PROMIS Anxiety), and depression (Patient Health Questionnaire (PHQ-8)), as well as outcomes of social interactions and social activities (Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities). Daily behaviors were automatically recorded by a smartphone application and smartphone logs, including physical activity (steps, travel miles, and activity minutes), sleep (sleep hours), and social contact (number of phone call and message contacts). RESULTS: Multilevel models controlling for demographic and burn injury variables examined the associations between symptoms and social participation outcomes, and the moderation effects of daily behaviors. Lower (worse) LIBRE Social Interactions and LIBRE Social Activities scores were significantly associated with higher (worse) PROMIS Pain Intensity, PROMIS Pain Interference, PROMIS Anxiety, and PHQ-8 scores (p<0.05). Additionally, daily steps and activity minutes were associated with LIBRE Social Interactions and LIBRE Social Activities (p<0.05), and significantly moderated the association between PROMIS Anxiety and LIBRE Social Activities (p<0.001). CONCLUSIONS: Social participation outcomes are associated with pain, anxiety, and depression symptoms after burn injury, and are buffered by daily physical activity. Future interventions studies should examine physical activity promotion on improving social recovery after burns.

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

ABSTRACT: Trauma centers demonstrate an impressive ability to save lives, as reflected by inpatient survival rates of over 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 (CCM) that have been put forward to improve trauma survivorship. Of 833 articles screened, we included 16 studies evaluating eight collaborative care programs, predominantly in the U.S. The majority of the programs offered care coordination and averaged 9-months in duration. Three-fourths of the programs incorporated a mental health provider within their primary team. Observed outcomes were diverse: some models showed increased engagement (e.g., Center for Trauma Survivorship, trauma quality-of-life follow-up clinic), while others presented mixed mental health outcomes and varied results on pain and healthcare utilization. The findings of this study indicate that collaborative interventions may be effective in mental health screening, PTSD and depression management, effective referrals, and improving patient satisfaction with care. A consensus on core elements and cost-effectiveness of CCMs is necessary to set the standard for comprehensive care in post-trauma recovery.

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. PARTICIPANTS: 181 adult participants less than 2 years after burn injury (N=181). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Demographic and injury variables were collected at discharge. Predictor variables were assessed at 6 and 12 months: Post-Traumatic Growth Inventory Short Form (PTGI-SF), Post-Traumatic Stress Disorder Checklist Civilian Version (PCL-C), Patient-Reported Outcomes Measurement Information System (PROMIS-29) Depression, Anxiety, Sleep Disturbance, Fatigue, and Pain Interference short forms, and self-reported Heat Intolerance. Social participation was measured at 24 months using the Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities short forms. RESULTS: Linear and multivariable regression models were used to examine predictor variables for social participation outcomes, controlling for demographic and injury variables. For LIBRE Social Interactions, significant predictors included the PCL-C total score at 6 months (ß=-0.27, P<.001) and 12 months (ß=-0.39, P<.001), and PROMIS-29 Pain Interference at 6 months (ß=-0.20, P<.01). For LIBRE Social Activities, significant predictors consisted of the PROMIS-29 Depression at 6 months (ß=-0.37, P<.001) and 12 months (ß=-0.37, P<.001), PROMIS-29 Pain Interference at 6 months (ß=-0.40, P<.001) and 12 months (ß=-0.37, P<.001), and Heat Intolerance at 12 months (ß=-4.55, P<.01). CONCLUSIONS: Post-traumatic stress and pain predicted social interactions outcomes, while depression, pain and heat intolerance predicted social activities outcomes in people with burn injury.

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. Multiple symptoms include profound fatigue, post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance, pain, and other symptoms persisting for more than 6 months. Diagnosis is challenging due to fluctuating and complex symptoms. ME/CFS Common Data Elements (CDEs) were identified in the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data Element Repository. This study reviewed ME/CFS CDEs item content. METHODS: Inclusion criteria for CDEs (measures recommended for ME/CFS) analysis: 1) assesses symptoms; 2) developed for adults; 3) appropriate for patient reported outcome measure (PROM); 4) does not use visual or pictographic responses. Team members independently reviewed CDEs item content using the World Health Organization International Classification of Functioning, Disability and Health (ICF) framework to link meaningful concepts. RESULTS: 119 ME/CFS CDEs (measures) were reviewed and 38 met inclusion criteria, yielding 944 items linked to 1503 ICF meaningful concepts. Most concepts linked to ICF Body Functions component (b-codes; n = 1107, 73.65%) as follows: Fatiguability (n = 220, 14.64%), Energy Level (n = 166, 11.04%), Sleep Functions (n = 137, 9.12%), Emotional Functions (n = 131, 8.72%) and Pain (n = 120, 7.98%). Activities and Participation concepts (d codes) accounted for a smaller percentage of codes (n = 385, 25.62%). Most d codes were linked to the Mobility category (n = 69, 4.59%) and few items linked to Environmental Factors (e codes; n = 11, 0.73%). DISCUSSION: Relatively few items assess the impact of ME/CFS symptoms on Activities and Participation. Findings support development of ME/CFS-specific PROMs, including items that assess activity limitations and participation restrictions. Development of psychometrically-sound, symptom-based item banks administered as computerized adaptive tests can provide robust assessments to assist primary care providers in the diagnosis and care of patients with ME/CFS.

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. Data on study methodology, participant and digital intervention characteristics, and findings related to social participation were extracted. The search yielded a total of 4646 articles and 14 articles met criteria for final review with five randomized controlled trials, two non-randomized clinical trials and seven one-group pretest-posttest clinical trials. Studies were organized based on the digital intervention strategy implemented to improve social participation: group support (n = 4), individual skill training or counseling (n = 6), education and support (n = 3), and mixed intervention (n = 1). The group support interventions developed a social network among participants through videoconference, app, or virtual reality platform. Three studies reported positive improvements in different aspects of social participation. Individual skill training or counseling mainly utilized phone calls to help participants cope with activity participation and interpersonal relationship issues. Only two studies demonstrated benefits for social participation. The education and support intervention, which used messages and website information to increase participants' knowledge and provide support, showed positive findings in three studies. This review suggests digital interventions for improving social participation in adults with long-term physical conditions are feasible and the effectiveness of different strategies may vary.Registration: This review was prospectively registered on the International Prospective Register of Systematic Reviews (PROSPERO) (registry number: CRD42021254105).

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. Objectives: This paper's objectives are to (1) conduct a scoping review of qualitative literature that defines and characterizes participation from the perspective of pwABI of any type, (2) synthesize how pwABI define and categorize participation, and (3) link the themes identified in the qualitative synthesis to the International Classification of Functioning, Disability, and Health (ICF) using standardized linking rules to enhance the comparability of our findings to other types of health information, including standardized outcome measures. Methods: We completed a scoping review of qualitative literature. Our search included PubMed, APA PsychInfo, CINAHL, and Embase databases and included articles that (1) had qualitative methodology, (2) had a sample ≥50% pwABI, (3) had aims or research questions related to the meaning, definition, perception, or broader experience of participation, and (4) were in English. Qualitative findings were synthesized using Thomas and Harden's methodology and resultant themes were linked to ICF codes. Results: The search identified 2,670 articles with 2,580 articles excluded during initial screening. The remaining 90 article abstracts were screened, and 6 articles met the full inclusion criteria for the qualitative synthesis. Four analytical themes emerged: (1) Essential Elements of Participation (2) How pwABI Approach Participation, (3) Where pwABI Participate, and (4) Outcomes of Participation. Each overarching theme included multiple descriptive themes. Conclusion: In this paper, we identified themes that illustrate key components of participation to pwABI. Our results provide insight into the complex perspectives about participation among pwABI and illustrate aspects of participation that should hold elevated importance for clinicians and researchers supporting participation of pwABI.

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. This scoping review utilized a PubMed search from January 2014 to August 2019 for the following terms: "trajectory curves" or "trajectory models" and "clinic" or "clinical." Only articles that specifically referenced longitudinal and clinical research designs were included in the scoping review. Articles were assessed using standard scoping review methods and categorized based on clinical application of trajectory curves for either benchmarking or prediction. The initial literature review identified 141 manuscripts and 34 met initial inclusion criteria. The reviewed articles support the clinical use of trajectory curves. Findings provide insight into several key determinants involved with the successful development and implementation of trajectory curves in clinical settings. These findings will inform efforts to use the LIBRE Profile to model social participation recovery and assist in developing effective strategies using trajectory curves to promote social reintegration after burn injury.

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. PARTICIPANTS: Persons with traumatic spinal cord injury (SCI) discharged from inpatient rehabilitation at 14 SCIMS programs (N=1237). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: FIM motor items were matched to SCI-FI/AT domains and summary scores for each measure were developed. The kernel-based method was employed to develop a concordance table to estimate SCI-FI/AT domain summary scores from content-matched FIM motor item summary scores. We conducted analyses to compare agreement between actual SCI-FI/AT summary scores (actual SCI-FI/AT_S) and estimated SCI-FI/AT summary scores (est-SCI-FI/AT_S) for the total sample and for participants with different SCI injury categories. RESULTS: Nine FIM items matched SCI-FI/AT basic mobility and self-care domain content. Pearson correlations for actual and est-SCI-FI/AT_S scores (0.79) were adequate for using concordance linking methods. Intraclass correlation coefficient values (0.79; 95% confidence interval, 0.77-0.81) indicated moderate reliability. t tests revealed no significant differences between actual and est-SCI-FI/AT_S scores in the total sample. For almost 60% of the sample, actual and est-SCI-FI/AT_S score differences were <5 points (half of a SD). Greater differences between actual and est-SCI-FI/AT_S scores were noted for persons with tetraplegia American Spinal Injury Association Impairment Scales (AISs) A, B, and C. CONCLUSIONS: Despite differences between the FIM and SCI-FI/AT assessments, we developed a concordance table to estimate self-care and basic mobility SCI-FI/AT scores from content-matched FIM motor item scores. This concordance table allows researchers to merge FIM data with SCI-FI/AT data to analyze SCI functional outcomes at the group level. However, owing to greater differences between actual and estimated scores, the concordance table should be used with caution to interpret scores for those with cervical-level injuries AISs A, B, C.

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. PARTICIPANTS: Study 1 participants included 184 adults with recent (≤4 months) traumatic SCI and 221 community-dwelling adults (>1 year post injury) (N=405). Study 2 participants were 418 individuals with recent SCI (≤4 months) (N=418). INTERVENTIONS: In study 1, SCI-FI/C computer adaptive tests were presented in a standardized interview format either in person or by phone call at baseline and 6-month follow-up. Responsiveness was examined by comparing 6-month changes in SCI-FI scores within and across samples (recently injured vs community-dwelling) because only the recent injury sample was expected to exhibit change over time. Effect sizes were also computed. In study 2, the study 1 results were cross-validated in a second sample with recent SCI 1 year after baseline measurement. Study 2 also compared the SCI-FI/C measures' responsiveness to that of the Self-reported Functional Measure (SRFM) and stratified results by injury diagnosis and completeness. MAIN OUTCOME MEASURES: The SCI-FI Basic Mobility/C, Self-care/C and Fine Motor/C item banks (study 1 and study 2); Self-reported Functional Measure SRFM (study 2 only). RESULTS: In study 1, changes in SCI-FI/C scores between baseline and 6-month follow-up were statistically significant (P<.01) for recently injured individuals. SCI-FI Basic Mobility/C, Self-care/C, and Fine Motor/C item banks demonstrated small to medium effect sizes in the recently injured sample. In the community-dwelling sample, all SCI-FI/C effects were negligible (ie, effect size<0.08). Study 2 results were similar to study 1. As expected, SCI-FI Basic Mobility/C and Self-care/C were responsive to change for all individuals in study 2, whereas the SCI-FI Fine Motor/C was responsive only for individuals with tetraplegia and incomplete paraplegia. The SRFM demonstrated a medium effect size for responsiveness (effect size=0.65). CONCLUSIONS: The SCI-FI Basic Mobility/C and Self-care/C banks demonstrate adequate sensitivity to change at 6 months and 1 year for all individuals with SCI, while the SCI-FI/C Fine Motor item bank is sensitive to change in individuals with tetraplegia or incomplete paraplegia. All SCI-FI/C banks demonstrate stability in a sample not expected to change. Results provide support for the use of these measures for research or clinical use.

Physical Function Recovery Trajectories After Spinal Cord Injury.

OBJECTIVE: To explore trajectories of functional recovery that occur during the first 2 years after spinal cord injury (SCI). DESIGN: Observational cohort study. SETTING: Eight SCI Model System sites. PARTICIPANTS: A total of 479 adults with SCI completed 4 Spinal Cord Injury-Functional Index (SCI-FI) item banks within 4 months of injury and again at 2 weeks, 3, 6, 12, and 24 months after baseline assessment (N=479). INTERVENTION: None. MAIN OUTCOME MEASURES: SCI-FI Basic Mobility/Capacity (C), Fine Motor Function/C, Self-care/C, and Wheelchair Mobility/Assistive Technology (AT) item banks. RESULTS: Growth mixture modeling was used to identify groups with similar trajectory patterns. For the Basic Mobility/C and Wheelchair Mobility/AT domains, models specifying 2 trajectory groups were selected. For both domains, a majority class exhibited average functional levels and gradual improvement, primarily in the first 6 months. A smaller group of individuals made gradual improvements but had greater initial functional limitations. The Self Care/C domain exhibited a similar pattern; however, a third, small class emerged that exhibited substantial improvement in the first 6 months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed 2 patterns, with individuals reporting generally low initial scores and then making either modest or large improvements. In individual growth curve models, injury/demographic factors predicted initial functional levels but less so regarding rates of recovery. CONCLUSIONS: Trajectories of functional recovery followed a small number of change patterns, although variation around these patterns emerged. During the first 2 years after initial hospitalization, SCI-FI scores showed modest improvements; however, substantial improvements were noted for a small number of individuals with severe limitations in fine motor and self-care function. Future studies should further explore the personal, medical, and environmental characteristics that influence functional trajectories during these first 2 years and beyond.

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. PARTICIPANTS: Individuals (N=269) recruited from 6 SCI Model Systems sites. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed computer adaptive test and short form versions of 4 SCI-FI/Capacity (C) banks (ie, Ambulation, Basic Mobility, Fine Motor, Self-Care) and 1 SCI-FI/Assistive Technology (AT) bank (Wheelchair Mobility) at baseline and after 2 weeks. The Self-Report Functional Measure (SRFM) and the clinician-rated motor FIM were used to evaluate evidence of convergent validity. RESULTS: Pearson correlations, intraclass correlation coefficients, minimal detectable change, and Bland-Altman plots supported the test-retest reliability of the SCI-FI instruments. Correlations were large with the SRFM (.69-.89) and moderate-to-large for the FIM instrument (.44-.64), supporting convergent validity. Known-groups validity was demonstrated by a significant main effect of injury level on all instruments and a main effect of injury completeness on the SCI-FI/C instruments. A ceiling effect was detected for individuals with incomplete paraplegia on the Fine Motor/C and Self-Care/C Short Forms. CONCLUSION: Findings support the test-retest reliability, convergent validity, and known-groups validity of the SCI-FI/C instruments and the SCI-FI/AT Wheelchair Mobility instruments for use by community-dwelling individuals.

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. The purpose of this study was to generate item pools that will be used to create a future computerized adaptive test (CAT) assessing postburn recovery in school-aged children. Item pool development was guided by the previously developed School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE5-12) conceptual framework. The item pool development process involved a systematic literature review, extraction of candidate items from existing legacy measures, iterative item review during expert consensus meetings, and parent cognitive interviews. The iterative item review with experts consisted of six rounds. A total of 10 parent cognitive interviews were conducted. The three broad themes of concern were items that needed 1) clarification, needed context, or were vague, 2) age dependence and relevance, and 3) word choice. The cognitive interviews indicated that survey instructions, recall period, item stem, and response choices were interpretable by respondents. Final item pool based on parental feedback consists of 57, 81, and 60 items in physical, psychological, and family and social functioning, respectively. Developed item pools (n = 198) in three domains are consistent with the existing conceptual framework. The next step involves field testing the item pool and calibration using item response theory to develop and validate the SA-LIBRE5-12 CAT Profile.

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.) employ bookmarking methods and an iterative consensus process including semi-structured interviews, focus groups and surveys to establish PEDI-SCI AM and PMoP level score cut-points and descriptions; 3.) use calibration sample data to examine mean score differences across levels [analyses of variance (ANOVAs)] and assess the sample distribution (%) across levels; 4.) repeat in a separate validation sample; 5.) develop level descriptions. Throughout the mixed methods approach, the sample participants include children with spinal cord injury (SCI), parents of children with SCI, and professionals who work with children with SCI. RESULTS: Four or five ability levels were identified for each PEDI-SCI AM and PMoP domain along with descriptions for each level. ANOVA results revealed significant overall differences for level mean scores and pairwise comparisons (p < 0.05). Consensus (>80%) was achieved for all PEDI-SCI AM and some PMoP level descriptions. CONCLUSION: PEDI-SCI AM and PMoP score cut-points identify different levels of activity and participation among children with SCI. These levels and descriptions provide clinical relevance for PEDI-SCI and PMoP numeric scores.

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. SETTING: Secondary analyses of data collected from 381 children with spinal cord injury (SCI) of at least 3-month duration living in the community, and 322 parents of children with SCI at three pediatric orthopedic hospitals in the United States. METHODS: Mixed methods iterative process to customize SF based on, highly relevant items, age and school analysis of item distributions; ceiling and floor effects; internal consistency and group-level reliability; correlation of SF scores with scores derived from the total item bank; and assessment of the degree to which item difficulty matched the abilities of children in the sample. RESULTS: PMoP SF V2.0 mean T scores ranged from 47.59 to 51.23. Overall, mean scores were somewhat higher for older children and parent respondents. Group-level reliability values ranged from 0.66 to 0.79; Cronbach's alpha values ranged from 0.79 to 0.90; ICC values ranged from 0.89 to 0.95. Pearson Correlations ranged from 0.80 to 0.95, showing good to strong correlation between scores from the SFs and total item bank for each domain. Test information function demonstrated that score estimates will be less precise at higher ends of the scale. CONCLUSIONS: PMoP SFs V2.0 contain items relevant to participation among children with SCI, and are tailored for four age groups and school status. They are recommended for use when computer adaptive testing (CAT) is not possible.

Measuring the impact of burn injury on the parent-reported health outcomes of children 1-to-5 years: Item pool development for the Preschool1-5 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. Item development was based on a framework provided by previous work to develop the Preschool Life Impact Burn Recovery Evaluation (LIBRE) Conceptual Model. The Preschool LIBRE Conceptual Model work established four sub-domains of functioning for children with burns aged 1-5. Item development involved a systematic literature review, a qualitative item review process with clinical experts, and parent cognitive interviews. Four item pools were established: (1) communication and language development; (2) physical functioning; (3) psychological functioning and (4) social functioning for preschool-aged children with burn injuries. We selected and refined candidate items, recall periods, survey instructions, and response option choices through clinical and parental feedback during the qualitative review and cognitive interview processes. Item pools are currently being field-tested as part of the process to calibrate and validate the Preschool1-5 LIBRE Computer Adaptive Test (CAT) Profile.

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. 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.

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. METHODS: Data for the adult burn survivor sample were from 601 adult burn survivors who participated in field-testing for the calibration of the Life Impact Burn Recovery Evaluation (LIBRE) Profile, a burn-specific instrument assessing social participation on six scales including sexual activity and romantic relationships. Comparison data were obtained from a general population sample of 2000 adults through sample matching. Demographic predictors of sexual activity and romantic relationship status were examined in each sample using modified Poisson regression analyses. Clinical predictors of engaging in sexual activity and romantic relationships were also examined in the LIBRE sample. RESULTS: Participants were slightly more likely to report being sexually active in the adult burn survivor sample than in the general sample (65% vs. 57%, p < 0.01). There was not a significant difference in romantic relationship status between the two samples (64% vs. 62%, p = 0.31). In multivariable regression analyses, men in both samples were more likely to report being in a sexual relationship (RR in LIBRE sample = 1.23, 95% CI 1.08-1.39; RR in general sample = 1.10, 95% CI 1.02-1.18). Participants in both samples who were not working were less likely to report being sexually active or in a romantic relationship (RRs ranging from 0.73 to 0.83, p < 0.05 for all estimates). In the adult burn survivor sample, respondents with hand burns were more likely to report being sexually active and in a romantic relationship (RR = 1.16, 95% CI 1.01-1.33). Time since burn injury, burn size, and burns to other critical areas were not significantly associated with either outcome in adjusted analyses. CONCLUSIONS: The likelihood of engaging in sexual activity and romantic relationships is similar among adult burn survivors and the comparison group representing a general United States sample of adults. Further research addressing sexual activity and romantic relationships after burn injuries will help to foster better patient-clinician dialogue, pinpoint barriers, design interventions, and allocate appropriate resources.

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

Background: 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. Materials and Methods: We conducted semistructured focus groups and interviews to assess women's experiences around their reproductive health and contextual factors related to disability. We used deductive and inductive qualitative coding approaches to develop the conceptual framework. Results: Eighty-one women between the ages of 16 and 50 with a self-reported physical disability, defined by an impairment of mobility, participated in 13 focus groups (N = 64) and 17 individual interviews. Five major themes characterized the conceptual framework that emerged-knowledge about reproductive health, communication about reproductive health, relationships, the reproductive health care environment, and self-advocacy/identity-all of which had some relationship with five major reproductive health issues-pregnancy and labor/delivery, periods and menstrual management, contraception, sexuality and sexual functioning, and pelvic examinations. Conclusions: This conceptual framework will serve as a foundation for PROM and guide intervention development to reduce reproductive health inequity and improve reproductive health outcomes of women with physical disabilities.