SCARF-BT Study
Research type
Research Study
Full title
Social Cognition Assessment and Rehabilitation for Families living with Brain Tumour (SCARF-BT): a Feasibility Study
IRAS ID
270758
Contact name
Stephen Price
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge
ISRCTN Number
ISRCTN14920547
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Research Summary:
Brain tumours are unlike other cancers. They change things that make us who we are - memory, thinking, personality and interaction with others. Maintaining quality of life must be our aim, as these people are rarely cured.
Detecting emotions in friends and family is a key part of relationships. When patients can’t engage with others it leaves them, and their carers, isolated and alone. Our studies suggest over half of patients with malignant brain tumours have emotional recognition problems.Rehabilitation helps improve emotional recognition following head injuries by helping brain ‘re-organisation’ to recover lost skills. We want to see if rehabilitation methods that work in patients following head injuries or stroke also work with brain tumour patients. The method we will use is called ‘FACES’ and helps patients re-learn recognising emotions in others.
Patients with high grade glioma and who have been shown to have problems with detecting emotions in others, will be invited to join the study. The study will be in two stages:
Stage 1: A small group of patients (about 10) will try the FACES rehabilitation. This involves 3 training sessions each week for 3 weeks, done at home using a computer, supported by a psychologist. We will compare results from tests at the beginning and end of the study to see if the rehabilitation works, and ask patients and carers how they found the study. This will let us know how to best run Stage 2.
Stage 2: In this larger study (39 patients), half will test the FACES rehabilitation programme and half will test a general computer-based programme as a comparison. The choice of rehabilitation programme will be made at random by a computer.
Our ultimate goal is to develop a clinical service that can treat common emotional and cognitive problems in brain tumour patients.
Lay summary of study results:
People with brain tumours often experience problems with memory, concentration, behaviour and recognising other people’s emotions. These changes can be very upsetting and can make everyday life harder for patients and their families. While there are rehabilitation programmes to help people after stroke or other brain injuries, there are very few designed specifically for people with brain tumours.
The SCARF-BT study set out to see whether it was possible to identify brain tumour patients who struggle to recognise emotions and to offer them a rehabilitation programme they could do at home. The researchers also wanted to know whether patients would agree to take part and manage to complete the programme.
First, we realised they needed a quick way to spot cognitive (thinking) problems. We created a simple, five-minute computer test and used it with 111 patients before their treatment. About two-thirds had at least one cognitive difficulty. Problems with recognising emotions, paying attention and visual perception were the most common. Many patients did not realise they had these problems until the tests showed them.
Although patients and carers agreed that cognitive problems were important, very few patients actually started the home-based rehabilitation. Many felt overwhelmed by their diagnosis, surgery and treatment, or were too tired to join in. Because so few completed the programme, the researchers did not move on to a larger trial.
The study showed that quick screening for cognitive problems is possible in routine NHS clinics and that these problems are common. Future work will focus on helping patients understand these difficulties, choosing the best time to offer rehabilitation, and creating online resources to support patients and families.REC name
East of England - Cambridge South Research Ethics Committee
REC reference
21/EE/0052
Date of REC Opinion
12 Apr 2021
REC opinion
Further Information Favourable Opinion