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

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Abstract

Purpose

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.

Methods

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.

Results

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 15.4 years (0–74 years) 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.

Conclusions

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.

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Funding

This work is supported by the National Institute on Disability, Independent Living, and Rehabilitation Research Award Number 90DP0055.

Author information

Authors and Affiliations

  1. Department of Health Law, Policy, and Management, Center for the Assessment of Pharmaceutical Practices (CAPP), Boston University School of Public Health, Boston, MA, USA

    Lewis E. Kazis, Marina Soley Bori, Flor Amaya & Emily Dore

  2. Health & Disability Research Institute, Boston University School of Public Health, 715 Albany Street, T5W, Boston, MA, 02118, USA

    Molly Marino, Pengsheng Ni & Alan M. Jette

  3. Department of Surgery, Massachusetts General Hospital, Boston, MA, USA

    Colleen M. Ryan

  4. Harvard Medical School, Boston, MA, USA

    Colleen M. Ryan & Jeff C. Schneider

  5. Shriners Hospitals for Children –Boston®, Boston, MA, USA

    Colleen M. Ryan

  6. Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA, USA

    Jeff C. Schneider & Vivian Shie

  7. The Phoenix Society for Burn Survivors, Grand Rapids, MI, USA

    Amy Acton

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  1. Lewis E. Kazis
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  2. Molly Marino
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Corresponding author

Correspondence to Molly Marino.

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Appendix

Appendix

See Figs. 4, 5 and Tables 4, 5, 6.

Fig. 4
figure 4

Conceptual model for social participation for burn survivors

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Fig. 5
figure 5

Examples of all dominant (a) and selected non-dominant (b) response category functioning

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Table 4 Items with a response category that was not dominant for any range of scores
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Table 5 Item mean score order and monotonicity
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Table 6 LIBRE profile items by scale
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Kazis, L.E., Marino, M., Ni, P. et al. Development of the life impact burn recovery evaluation (LIBRE) profile: assessing burn survivors’ social participation. Qual Life Res 26, 2851–2866 (2017). https://doi.org/10.1007/s11136-017-1588-3

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