Development of the School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE5–12) Profile: A Conceptual Framework

Author:

Rencken Camerin A1ORCID,Rodríguez-Mercedes Silvanys L1,Patel Khushbu F12,Grant Gabrielle G3,Kinney Erin M1,Sheridan Robert L1,Brady Keri J S4,Palmieri Tina L56,Warner Petra M78,Fabia Renata B9,Schneider Jeffrey C101112,Stoddard Frederick J1213,Kazis Lewis E4101112,Ryan Colleen M1212

Affiliation:

1. Shriners Hospitals for Children—Boston, Massachusetts, USA

2. Department of Surgery, Massachusetts General Hospital, Boston, USA

3. University of North Carolina at Chapel Hill, USA

4. Department of Health Law, Policy, and Management, Boston University School of Public Health, Massachusetts, USA

5. Division of Burn Surgery, Department of Surgery, University of California Davis, USA

6. Shriners Hospital for Children—Northern California, Sacramento, USA

7. Shriners Children’s Ohio, Ohio, USA

8. University of Cincinnati, Ohio, USA

9. Nationwide Children’s Hospital, Columbus, Ohio, USA

10. Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, Massachusetts, USA

11. Spaulding Research Institute, Boston, Massachusetts, USA

12. Harvard Medical School, Boston, Massachusetts, USA

13. Department of Psychiatry, Massachusetts General Hospital, Boston, USA

Abstract

Abstract Pediatric burn injuries can alter the trajectory of the survivor’s entire life. Patient-centered outcome measures are helpful to assess unique physical and psychosocial needs and long-term recovery. This study aimed to develop a conceptual framework to measure pediatric burn outcomes in survivors aged 5 to 12 years as a part of the School-Aged Life Impact Burn Recovery Evaluation Computer Adaptive Test (SA-LIBRE5–12 CAT) development. This study conducted a systematic literature review guided by the WHO International Classification of Functioning—Child and Youth and domains in the American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire5–18. Interviews with eight parents and seven clinicians were conducted to identify important domains in child recovery. One clinician focus group with four clinicians was completed to identify gaps in the preliminary framework, and semiweekly expert consensus meetings were conducted with three experts to solidify the framework. Qualitative data were analyzed by grounded theory methodology. Three major thematic outcome domains emerged: 1) Physical Functioning: fine motor and upper extremity, gross motor and lower extremity, pain, skin symptoms, sleep and fatigue, and physical resilience; 2) Psychological Functioning: cognitive, behavioral, emotional, resilience, and body image; and 3) Family and Social Functioning: family relationships, and parental satisfaction, school, peer relations, and community participation. The framework will be used to develop item banks for a CAT-based assessment of school-aged children’s health and developmental outcomes, which will be designed for clinical and research use to optimize interventions, personalize care, and improve long-term health outcomes for burned children.

Funder

Shriners Hospitals for Children

National Institute on Disability, Independent Living, and Rehabilitation Research

Publisher

Oxford University Press (OUP)

Subject

Rehabilitation,Emergency Medicine,Surgery

Reference74 articles.

1. Childhood burn injury-impacts beyond discharge;Duke;Transl Pediatr,2015

2. How disabling are pediatric burns? Functional independence in Dutch pediatric patients with burns;Disseldorp;Res Dev Disabil,2013

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