Using patient experiences and quantitative research to inform patient-reported outcome measures that are meaningful for people with burn scars

Dr Zephanie Tyack1, Dr. Megan Simons1,2, Professor  Roy Kimble1,3

1Centre For Children’s Burns and Trauma Research, Children’s Health Research Centre, 2Occupational Therapy Department – Lady Cilento Children’s Hospital, 3Pegg Leditschke Children’s Burns Centre – Lady Cilento Children’s Hospital

Abstract:
Background

The authors developed a conceptual model of health-related quality of life (HRQoL) based on patient experiences of burn scarring.  HRQoL concepts that are important to people in the general population have also been identified.  It is unclear how a plethora of emerging studies relevant to people with burn scars map against these concepts and models.

Methods

This work aimed to determine concepts that are meaningful for patients with burn scarring to validate the authors’ model of HRQoL and direct health professionals to choose the most appropriate patient-reported outcome measures (PROMs). Studies were obtained by searching google scholar and Medline using the terms “burn scar”, “qualitative” and “patient experience”, and through hand searching. Factors with medium to large associations with HRQOL or significant differences to the general population were identified.

Results

Five qualitative studies and nine quantitative studies were included.  Qualitative studies mapped strongly against ‘self-acceptance’ and less strongly against ‘purpose in life’, ‘activities of daily living’, ‘independence’, ‘optimism’, ‘autonomy’, ‘self-esteem’ and ‘good social contacts’ as concepts important in the general population. Qualitative studies mapped against ‘symptoms’ and ‘scar interventions’ as concepts from the authors’ model.  Factors with medium to large associations included overall perception of scarring, itch intensity, pain catastrophysing, tight scars making you tired, self-care, usual activities, anxiety/depression, psychosocial health and school functioning.

Discussion

The concepts of ‘time’, ‘routines’ and ‘cognitive factors’ have not yet been validated.  The majority of the concepts are covered by existing PROMs for people with burn scarring and will be discussed.

Biography:
Dr Tyack is a Research Fellow with the Centre for Children’s Burns and Trauma Research, Children’s Health Research Centre, and Metro South Health in Brisbane.  Her research focuses on innovative methods of improving the health-related quality of life of children and adults after burns and people with chronic diseases and testing and implementing patient-reported outcome measures into routine clinical practice.  She is currently involved in projects to develop and test a trauma-informed care e-learning package for occupational therapists treating children who present at hospitals and clinical trials examining the effectiveness of hypnosis and scar management interventions.

About ANZBA

ANZBA is a not for profit organisation and the peak body for health professionals responsible for the care of the burn injured in Australia and New Zealand. ANZBA encourages higher standards of care through education, performance monitoring and research.

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