CARe Responsiveness

Patient Reported Outcome Measures (also known as PROMs) are special questionnaires that healthcare professionals use to understand how people and their families feel during treatment. They’re developed with patients and rigorously tested to make sure that they capture everything that is relevant to patients and their care.  

PROMs are incredibly useful, because they make sure that patient experiences are included when assessing treatments and healthcare policies. Despite this, a review in 2001 found that PROMs were rarely used in burn care, and few burn-specific PROMs existed.  

Every year, around 250,000 people in the UK suffer a burn injury, and many will live with lifelong scarring. The trauma of the injury and later scarring can have lasting impact on the survivor. But without a standardised PROM, healthcare professionals and researchers can’t collect data from patients to understand how they feel or what treatments make them feel better. 

To address this need, the Centre for Appearance Research developed the CARe Burn Scales – a set of four burn-specific PROMS for children, young people, adults, and parents. 

The researchers tested the CARe Burns Scales and found that they were reliable and relevant to patients. But before the PROMs could be used in hospitals, the researchers needed to test their effectiveness over time: also known as ‘responsiveness.’  

What did the researchers do? 

The researchers, led by Professor Diana Harcourt, collaborated with 15 different NHS Burn Services in England, Scotland, and Wales to find a wide range of participants to test the Burn Scales.  

Over 750 patients took part. Each patient filled out the questionnaire for their age group. They did this three times during their recovery – once four weeks post-burn, again two months later, and finally six months after their initial injury.  

The researchers then analysed the results using a range of statistical tools. 

What did the researchers find? 

The results showed that all four CARe Burn Scales were responsive to change over time, meaning the data they collected capture how people’s feelings changed over the course of their treatment. 

What difference will this research make? 

This study has already had an impact. Now that the CARe Burn Scales have been tested for responsiveness, they’ve been given the green light – they are now available to use! 

This will help clinicians and researchers identify patients that need more support. Over time, the data could also be used to influence policy and treatment plans.  

For patients, the Burn Scales give them a chance to express their needs and advocate for treatment that works for them. For some, completing the CARe Burn Scales is empowering and cathartic. For others, it’s a reminder that even many months after their injuries, their support needs are still important and are informing their care.