title: Measuring the impact of burn scarring on health-related quality of life: Development and preliminary content validation of the Brisbane Burn Scar Impact Profile (BBSIP) for children and adults.
abstract: BACKGROUND
  No burn-scar specific, health-related quality of life (HRQOL) measure exists. This study aimed to develop a patient-reported, evaluative HRQOL measure to assess the impact of burn scarring in children and adults.
  
  
  METHODS
  Semi-structured interviews, content validation surveys, and cognitive interviews were used to develop and test content validity of a new measure - the Brisbane Burn Scar Impact Profile (BBSIP).
  
  
  RESULTS
  Participants comprised Australian adults (n=23) and children (n=19) with burn scarring; caregivers of children with burn scarring (n=28); and international scar management experts (n=14). Items distinct from other burn scar measures emerged. Four versions of the BBSIP were developed; one for children aged 8-18 years, one for adults, one for caregivers (as proxies for children aged less than 8-years), and one for caregivers of children aged 8-18 years. Preliminary content validity of the BBSIP was supported. Final items covered physical and sensory symptoms; emotional reactions; impact on social functioning and daily activities; impact of treatment; and environmental factors.
  
  
  CONCLUSIONS
  The BBSIP was developed to assess burn-scar specific HRQOL and will be available at http://www.coolburns.com.au under a creative commons license. Further testing is underway.
authors.affiliation: Centre for Children's Burns and Trauma Research, Child Health Research Centre, Level 4, Foundation Building, Royal Children's Hospital, Herston Rd, Herston, Brisbane, Queensland 4006, Australia; Central Queensland Hospital and Health Service, East St, Rockhampton, Queensland 4700, Australia. Electronic address: zephanie.tyack@gofarm.com.au.
authors.forename: Zephanie
authors.initials: Z
authors.lastname: Tyack
authors.affiliation: School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, Brisbane, Queensland 4067, Australia. Electronic address: j.ziviani@uq.edu.au.
authors.forename: Jenny
authors.initials: J
authors.lastname: Ziviani
authors.affiliation: Centre for Children's Burns and Trauma Research, Child Health Research Centre, Level 4, Foundation Building, Royal Children's Hospital, Herston Rd, Herston, Brisbane, Queensland 4006, Australia; Department of Paediatric Surgery, Urology, Neonatal Surgery, Burns and Trauma, Lady Cilento Children's Hospital, Brisbane, Queensland 4101, Australia; School of Medicine, The University of Queensland, St Lucia, Brisbane, Queensland 4067, Australia. Electronic address: royk@uq.edu.au.
authors.forename: Roy
authors.initials: R
authors.lastname: Kimble
authors.affiliation: Physiotherapy Department, Royal Brisbane and Women's Hospital, Butterfield St, Herston, Brisbane, Queensland 4006, Australia. Electronic address: Anita.Plaza@health.qld.gov.au.
authors.forename: Anita
authors.initials: A
authors.lastname: Plaza
authors.affiliation: Occupational Therapy Department, Royal Brisbane and Women's Hospital, Butterfield St, Herston, Brisbane, Queensland 4006, Australia. Electronic address: Amber.Jones@health.qld.gov.au.
authors.forename: Amber
authors.initials: A
authors.lastname: Jones
authors.affiliation: Centre for Children's Burns and Trauma Research, Child Health Research Centre, Level 4, Foundation Building, Royal Children's Hospital, Herston Rd, Herston, Brisbane, Queensland 4006, Australia. Electronic address: leila.cuttle@qut.edu.au.
authors.forename: Leila
authors.initials: L
authors.lastname: Cuttle
authors.affiliation: Centre for Children's Burns and Trauma Research, Child Health Research Centre, Level 4, Foundation Building, Royal Children's Hospital, Herston Rd, Herston, Brisbane, Queensland 4006, Australia; Department of Occupational Therapy, Lady Cilento Children's Hospital, 501 Stanley St, South Brisbane, Queensland 4101, Australia. Electronic address: Megan.Simons@health.qld.gov.au.
authors.forename: Megan
authors.initials: M
authors.lastname: Simons
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002056:Burns / Q000150:complications* / Q000523:psychology; D017028:Caregivers / Q000523:psychology; D002648:Child; D002921:Cicatrix / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D011788:Quality of Life; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Burns; Cicatrix; Health and wellbeing; Hypertrophic; Outcome assessment; Patient reported outcomes; Quality of life