Catrin Griffith BSc MSc in Bristol is using a PROMs questionnaire to measure how patients cope with both the pain and the psycho-social effects of being burned. Her findings will help the NHS effectively treat patients by better understanding their emotional and physical needs. She currently works at the Centre for Appearance Research, UWE.
A burn injury can have a profound psychological impact, including feelings of anxiety, guilt and depression, concerns about treatment and survivorship, and effects on relationships and quality of life. It has a profound impact on appearance (e.g. scarring) and body image. These effects are not only felt by the person with the burn – the impact on those around them (family and friends) can also be sizeable. Therefore, increasing consideration is being given to the possible psychosocial impact of burn injuries and the development of appropriate interventions.
One aspect that has received less attention is the systematic assessment of patients’ experiences of their care, scarring and psychosocial functioning after burns. Yet this information is needed, alongside the traditional benchmarks of surgical outcomes, to inform future commissioning and the provision of care.
Patient reported outcome measures (PROMs), for example questionnaires that patients complete themselves, ensure that patients’ views are included in the assessment of services and treatment decision-making. They hold the potential to put patients’ opinions at the heart of their care and this increased autonomy can have indirect benefits to health. However, there is currently no agreement on how to most appropriately assess patient reported outcomes (PROs) in burns, with the result that they are either overlooked or a diverse range of tools are used, thereby preventing direct comparison.
This study aims to develop a core set of PROM outcome measures (questionnaires) for child, adolescent and adult patients over a three year period. The project is being conducted by Catrin Griffiths – The Restore Fellow – supervised by Professors Diana Harcourt and Nichola Rumsey (co-directors of the Centre for Appearance Research at the University of The West of England in Bristol).
The project is currently in year two and has been adopted nationally across the United Kingdom. In five pilot centres, large numbers of interviews have been carried out with patients, family members and health professionals. All are being interviewed to identify the most important issues for people living with a burn injury. The first questionnaire, an adolescent PROM, has undergone a number of revisions in response to patient feedback, the comments of a number of national psychologists and an international expert in PROM science, Dr Anne Klassen from from McMaster University in Canada. Recently, the adolescent PROM was piloted with young people aged 11 to 18 at the National Burn Camp. There was a very favourable response from those that participated.
A draft version of the adult PROM has been developed and the second stage of testing is about to begin – cognitive debriefing interviews – in which adults with a burn will review and provide feedback about the PROM. Catrin is currently designing the study that will test the adult and adolescent PROM on a larger scale. This is likely to be conducted as an audit project with a number of NHS burn services and an exciting development is the possibility of including our Restore PROM questionnaires in the national database of information that is held about every burn injury: iBID. Catrin and colleagues have held talks with the team that runs this online database and there is the real possibility that the PROM will be adopted and optimised with ongoing patient feedback through the computerised system on a national level. This is a good example of Restore research changing burn care on a national scale.
Funding links have been made with Dan’s fund for Burns, a partner charity, who have contributed £10,000 towards the funding for the third year of the project. We are delighted that they have recognised the potential value of this project to patients and are working with Restore and UWE on this national collaborative project. We are searching for further support for Catrin’s invaluable project as it is scaled up beyond our initial hopes.