Alan M. Jette

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.

Ability of PROMIS Pediatric Measures to Detect Change in Children With Cerebral Palsy Undergoing Musculoskeletal Surgery.

Background: The Patient Reported Outcomes Measurement Information System (PROMIS) was developed to provide patient-reported outcome measures that are designed as being universally relevant across health conditions, low burden, and precise. A major problem for research and clinical practice in cerebral palsy (CP) is the void of outcomes instruments that are capable of evaluating the wide range of abilities and broad age spectrum inherent in this clinical population. Given the tremendous potential of PROMIS, the research questions for this study were “How do PROMIS pediatric computer adaptive tests and short forms detect change in children with CP following elective musculoskeletal surgery?” and “How do PROMIS instruments compare to the Pediatric Quality of Life Inventory Cerebral Palsy Module Version 3.0 (PedsQL CP), Pediatric Outcomes Data Collection Instrument (PODCI), the Timed Up and Go (TUG), and the Gross Motor Functional Measure (GMFM).” Methods: PROMIS Pediatric computer adaptive tests and short forms and the PedsQL, PODCI, TUG, and GMFM were administered before and after surgery. Effect size (ES) and standardized response mean (SRM) were calculated. Floor and ceiling effects were evaluated and, exposure rates for the PROMIS item banks were examined. Results: ES and SRM for all PROMIS Pediatric Measures were nonsignificant. PedsQL CP detected significant, positive change in mobility at 6 (ES=0.26; SRM=0.31) and 12 (ES=0.36; SRM=0.36) months; pain at 12 months (ES=0.29; SRM=0.34); and fatigue at 6 (ES=0.24; SRM=0.22) and 12 (ES=0.36; SRM=0.41) months. Significant negative changes were detected by the PODCI (ES=−0.20; SRM=−0.26), GMFM (ES=−0.13; SRM=−0.24), and TUG (ES=−0.29; SRM=−0.25). Ceiling effects were high. Exposure to an appropriate range of the PROMIS Mobility item bank was limited. Conclusions: PROMIS measures were less able to detect change than other measures. PROMIS measures may be improved by tailoring start/stop rules or by adding items to include content appropriate for children with mobility impairments. Level of Evidence: Level III—diagnostic study.

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.

Development of the life impact burn recovery evaluation (LIBRE) profile: assessing burn survivors’ social participation

PurposeMeasuring 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.Methods192 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.ResultsThe study sample included 54.7% women with a mean age of 44.6 (SD 15.9) years. The average time since burn injury was 15.4xa0years (0–74xa0years) 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.ConclusionsThe 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.

Developing Artificial Neural Network Models to Predict Functioning One Year After Traumatic Spinal Cord Injury

OBJECTIVEnTo develop mathematical models for predicting level of independence with specific functional outcomes 1 year after discharge from inpatient rehabilitation for spinal cord injury.nnnDESIGNnStatistical analyses using artificial neural networks and logistic regression.nnnSETTINGnRetrospective analysis of data from the national, multicenter Spinal Cord Injury Model Systems (SCIMS) Database.nnnPARTICIPANTSnSubjects (N=3142; mean age, 41.5y) with traumatic spinal cord injury who contributed data for the National SCIMS Database longitudinal outcomes studies.nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnSelf-reported ambulation ability and FIM-derived indices of level of assistance required for self-care activities (ie, bed-chair transfers, bladder and bowel management, eating, toileting).nnnRESULTSnModels for predicting ambulation status were highly accurate (>85% case classification accuracy; areas under the receiver operating characteristic curve between .86 and .90). Models for predicting nonambulation outcomes were moderately accurate (76%-86% case classification accuracy; areas under the receiver operating characteristic curve between .70 and .82). The performance of models generated by artificial neural networks closely paralleled the performance of models analyzed using logistic regression constrained by the same independent variables.nnnCONCLUSIONSnAfter further prospective validation, such predictive models may allow clinicians to use data available at the time of admission to inpatient spinal cord injury rehabilitation to accurately predict longer-term ambulation status, and whether individual patients are likely to perform various self-care activities with or without assistance from another person.

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

OBJECTIVEnTo examine differences in long-term social reintegration outcomes for burn survivors with and without peer support attendance.nnnDESIGNnCross-sectional survey.nnnSETTINGnCommunity-dwelling burn survivors.nnnPARTICIPANTSnBurn 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).nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnThe 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.nnnRESULTSnBurn 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).nnnCONCLUSIONSnBurn 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.

The associations of gender with social participation of burn survivors: a life impact burn recovery evaluation profile study

Burn injury can be debilitating and affect survivors quality of life in a profound fashion. Burn injury may also lead to serious psychosocial challenges that have not been adequately studied and addressed. Specifically, there has been limited research into the associations of burn injury on community reintegration based on gender. This work analyzed data from 601 burn survivors who completed field testing of a new measure of social participation for burn survivors, the Life Impact Burn Recovery Evaluation (LIBRE) Profile. Differences in item responses between men and women were examined. Scores on the six LIBRE Profile scales were then compared between men and women using analysis of variance and adjusted linear multivariate regression modeling. Overall, men scored significantly better than women on four of the six LIBRE Profile scales: Sexual Relationships, Social Interactions, Work & Employment, and Romantic Relationships. Differences were not substantially reduced after adjustment for demographic characteristics and burn size. Men scored better than women in most of the areas measured by the LIBRE Profile. These gender differences are potentially important for managing burn patients during the post-injury recovery period.

Detecting functional change in response to exercise in knee osteoarthritis: a comparison of two computerized adaptive tests

BackgroundThe intent of this study was to examine and compare the ability to detect change of two patient reported outcome (PRO) instruments that use a computerized adaptive test (CAT) approach to measurement. The Patient Reported Outcomes Measurement Information System (PROMIS®) Physical Function scale is a generic PRO, while the Osteoarthritis Computerized Adaptive Test (OA-CAT) is an osteoarthritis-specific PRO.MethodsThis descriptive, longitudinal study was conducted in a community setting, involving individuals from the greater Boston area. Inclusion criteria: ageu2009>u200950, self-reported doctor-diagnosed knee osteoarthritis (OA) and knee pain. The PROMIS® Physical Function CAT and OA-CAT Functional Difficulty scale were administered at baseline and at the conclusion of a 6-week exercise program. Effect sizes (ES) were calculated for both measures, and bootstrap methods were used to construct confidence intervals and to test for significant ES differences between the measures.ResultsThe OA-CAT Functional Difficulty scale achieved an ES of 0.62 (0.43, 0.87) compared to the PROMIS® Physical Function CAT ES of 0.42 (0.24, 0.63). ES estimates for the two CAT measures were not statistically different.ConclusionsThe condition-specific OA-CAT and generic PROMIS® Physical Function CAT both demonstrated the ability to detect change in function. While the OA-CAT scale showed larger effect size, no statistically significant difference was found in the effect size estimates for the generic and condition-specific CATs. Both CATs have potential for use in arthritis research.Trial registrationThis trial is registered with ClinicalTrials.gov on 6/21/11 (Identifier NCT01394874)

Sensitivity of the SCI-FI/AT in Individuals with Traumatic Spinal Cord Injury

OBJECTIVEnTo examine the ability of the Spinal Cord Injury-Functional Index/Assistive Technology (SCI-FI/AT) measure to detect change in persons with spinal cord injury (SCI).nnnDESIGNnMultisite longitudinal (12-mo follow-up) study.nnnSETTINGnNine SCI Model Systems programs.nnnPARTICIPANTSnAdults (N=165) with SCI enrolled in the SCI Model Systems database.nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnSCI-FI/AT computerized adaptive test (CAT) (Basic Mobility, Self-Care, Fine Motor Function, Wheelchair Mobility, and/or Ambulation domains) completed at discharge from rehabilitation and 12 months after SCI. For each domain, effect size estimates and 95% confidence intervals were calculated for subgroups with paraplegia and tetraplegia.nnnRESULTSnThe demographic characteristics of the sample were as follows: 46% (n=76) individuals with paraplegia, 76% (n=125) male participants, 57% (n=94) used a manual wheelchair, 38% (n=63) used a power wheelchair, 30% (n=50) were ambulatory. For individuals with paraplegia, the Basic Mobility, Self-Care, and Ambulation domains of the SCI-FI/AT detected a significantly large amount of change; in contrast, the Fine Motor Function and Wheelchair Mobility domains detected only a small amount of change. For those with tetraplegia, the Basic Mobility, Fine Motor Function, and Self-Care domains detected a small amount of change whereas the Ambulation item domain detected a medium amount of change. The Wheelchair Mobility domain for people with tetraplegia was the only SCI-FI/AT domain that did not detect significant change.nnnCONCLUSIONSnSCI-FI/AT CAT item banks detected an increase in function from discharge to 12 months after SCI. The effect size estimates for the SCI-FI/AT CAT vary by domain and level of lesion. Findings support the use of the SCI-FI/AT CAT in the population with SCI and highlight the importance of multidimensional functional measures.

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

OBJECTIVEnTo examine differences in long-term social reintegration outcomes for burn survivors with and without work-related injuries.nnnDESIGNnCross-sectional survey.nnnSETTINGnCommunity-dwelling burn survivors.nnnPARTICIPANTSnBurn survivors (N=601) aged ≥18 years with injuries to ≥5% total body surface area or burns to critical areas (hands, feet, face, or genitals).nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnThe 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.nnnRESULTSnOlder 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.nnnCONCLUSIONSnBurn 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.