title: Long term outcomes data for the Burns Registry of Australia and New Zealand: Is it feasible?
abstract: BACKGROUND
  Incorporating routine and standardised collection of long term outcomes following burn into burn registries would improve the capacity to quantify burn burden and evaluate care.
  
  
  OBJECTIVE
  To evaluate methods for collecting the long term functional and quality of life outcomes of burns patients and establish the feasibility of implementing these outcomes into a multi-centre burns registry.
  
  
  METHODS
  Five Burns Registry of Australia and New Zealand (BRANZ) centres participated in this prospective, longitudinal study. Patients admitted to the centres between November 2009 and November 2010 were followed-up at 1, 6, 12 and 24-months after injury using measures of burn specific health, health status, fatigue, itch and return to work. Participants in the study were compared to BRANZ registered patients at the centres over the study timeframe to identify participation bias, predictors of successful follow-up were established using a Generalised Estimating Equation model, and the completion rates by mode of administration were assessed.
  
  
  RESULTS
  463 patients participated in the study, representing 24% of all BRANZ admissions in the same timeframe. Compared to all BRANZ patients in the same timeframe, the median %TBSA and hospital length of stay was greater in the study participants. The follow-up rates were 63% at 1-month, 47% at 6-months; 40% at 12-months, and 21% at 24-months after injury, and there was marked variation in follow-up rates between the centres. Increasing age, greater %TBSA and opt-in centres were associated with greater follow-up. Centres which predominantly used one mode of administration experienced better follow-up rates.
  
  
  CONCLUSIONS
  The low participation rates, high loss to follow-up and responder bias observed indicate that greater consideration needs to be given to alternative models for follow-up, including tailoring the follow-up protocol to burn severity or type.
authors.affiliation: Department of Epidemiology and Preventive Medicine, Monash University, The Alfred Centre, Commercial Road, Melbourne 3004, Australia; Farr Institute - CIPHER, College of Medicine, Swansea University, Singleton Park, Swansea, Wales SA28PP, United Kingdom. Electronic address: belinda.gabbe@monash.edu.
authors.forename: Belinda J
authors.initials: BJ
authors.lastname: Gabbe
authors.affiliation: Victorian Adult Burns Service, The Alfred, Commercial Road, Melbourne 3004, Australia; Department of Surgery, Monash University, The Alfred Centre, Commercial Road, Melbourne 3004, Australia.
authors.forename: Heather
authors.initials: H
authors.lastname: Cleland
authors.affiliation: Department of Epidemiology and Preventive Medicine, Monash University, The Alfred Centre, Commercial Road, Melbourne 3004, Australia; Occupational Therapy Department, Alfred Health, Commercial Road, Melbourne 3004, Australia.
authors.forename: Dina M
authors.initials: DM
authors.lastname: Watterson
authors.affiliation: Tasmanian Burns Unit, Royal Hobart Hospital, Burns & Surgical Specialities Unit 5A, GPO Box 1061, 7001, Hobart, Australia.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Schrale
authors.affiliation: Burns Unit, Royal Adelaide Hospital, North Terrace, Adelaide, Australia.
authors.forename: Sally
authors.initials: S
authors.lastname: McRae
authors.affiliation: Burns Unit, Concord Repatriation General Hospital, Missenden Road, Camperdown 2050, Australia.
authors.forename: Christine
authors.initials: C
authors.lastname: Parker
authors.affiliation: Burns Unit, Concord Repatriation General Hospital, Missenden Road, Camperdown 2050, Australia.
authors.forename: Susan
authors.initials: S
authors.lastname: Taggart
authors.affiliation: Burn Injury Research Node, The University of Notre Dame, 19 Mouat Street, Fremantle 6959, Australian; Fiona Wood Foundation, Fiona Stanley Hospital, 11 Warren Drive, Murdoch 6150, Australia; State Adult Burn Unit, Fiona Stanley Hospital, 11 Warren Drive, Murdoch 6150, Australia.
authors.forename: Dale W
authors.initials: DW
authors.lastname: Edgar
mesh_terms: D000328:Adult; D000367:Age Factors; D001315:Australia; D002053:Burn Units; D002056:Burns / Q000628:therapy*; D015331:Cohort Studies; D017281:Cost of Illness; D003625:Data Collection; D005221:Fatigue; D005240:Feasibility Studies; D005260:Female; D006304:Health Status; D006801:Humans; D008137:Longitudinal Studies; D059012:Lost to Follow-Up; D008297:Male; D008875:Middle Aged; D009520:New Zealand; D017063:Outcome Assessment, Health Care; D010352:Patient Dropouts; D011537:Pruritus; D011788:Quality of Life; D012042:Registries; D015599:Trauma Severity Indices
keywords: Burn centres; Burn registry; Follow-up; Long term outcomes; Longitudinal cohort study