SCARF-BT

Our studies suggest over half of patients with malignant brain tumours have emotional recognition problems. Currently there is little psychological support offered to these patients.

Research summary

The effects of brain tumours on the normal brain function make them different to other cancers. They frequently affect characteristics and faculties that make who we are as individuals: personality, memory, cognition and the ability to interact with others. Changes to an individual’s personality and behaviour can make them unrecognisable to friends, loved ones and even themselves, whilst those with speech, memory or concentration problems may find meeting new people stressful and embarrassing. This has an impact on both patients and their family, adversely affecting their functioning and quality of life. 

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 brain tumours who have been shown to have problems with detecting emotions in others, will be invited to join the study. The study will be in three stages:

Pre-Stage 1: A small group of patients and carers of brain tumour patients (about 10) will be asked about their lived experience of coping with brain tumour and disorders of social cognition. They will be asked how they feel about the proposed study and what potential barriers and enablers to trial participation can they see. This will be used to optimise the intervention before Stage 1.

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 their carers how they found the study. This will let us know how to best run Stage 2.

Stage 2: In this larger study, at least 17 patients testing the FACES rehabilitation programme will be compared with a similar number of patients testing a general computer-based programme. The choice of rehabilitation programme will be made at random by a computer.

Our goal is to develop a clinical service that can treat common emotional and cognitive problems in brain tumour patients.

Main inclusion criteria

Pre-stage 1 (Qualitative Study) Eligibility Criteria for patients

Inclusion Criteria:

  1. Patients with social cognition deficits or reporting social participation problems.
  2. Signed informed consent to SCARF-BT study
  3. Aged 18 years and older
  4. Imaging evidence of a brain tumour as assessed by a neuro-oncology MDT;
  5. Patient with WHO Performance status 0-2;
  6. Speaks fluent English as the use of interpreters can alter patients’ exact words.

  7. Willing to participate in interviews and/or focus groups.

Stage 1 and Stage 2 Eligibility Criteria for patients

Inclusion Criteria:

  1. Patients scoring 11 or less on the emotional recognition test within the OCS-Bridge screening tool done pre-operatively (consistent with having a deficit pre-operatively)
  2. Signed informed consent to SCARF-BT study
  3. Aged 18 years and older
  4. Imaging evidence of a brain tumour as assessed by a neuro-oncology MDT;
  5. MDT and treating clinician recommend either biopsy or debulking of the tumour;
  6. Patients scoring 11 or less on the emotional recognition test within the OCS-Bridge screening tool done post-operatively (consistent with having a deficit post-operatively)
  7. Patient with WHO Performance status 0-2;
  8. Patient suitable for oncological intervention involving radiotherapy/chemotherapy/ combining radiotherapy and chemotherapy.
  9. For qualitative study only: speaks fluent English as the use of interpreters can alter patients’ exact words.

For qualitative study only: willing to participate in interviews and/or focus groups.

Inclusion Criteria for Carers (all stages)

Inclusion Criteria:

  1. Written informed consent
  2. Family member/someone they care for with Brain Tumour who is participating in this study, with the exception of pre-stage 1, where the patient may be eligible but not participating in the study.
  3. Able and willing to complete the caregiver Quality of Life questionnaires
  4. For Qualitative Study only: speaks fluent English as the use of interpreters can alter patients exact words.

For Qualitative Study only: willing to participate in interviews and/or focus groups.

Main exclusion criteria

Pre-stage 1 (Qualitative Study) Eligibility Criteria for patients:

Exclusion Criteria

  1. Patients unable to give written consent or lack capacity to consent;
  2. Patients for palliative/best supportive care only following surgery.
  3. Pre-morbid developmental or acquired/traumatic neurologic disorder (e.g. autism, stroke or dementia/cognitive impairment); 
  4. Pre-morbid major psychiatric disorder (e.g. schizophrenia); 
  5. Impaired vision and/or hearing that would interfere with task participation (determined by interacting with participant on screening and medical history)

Stage 1 and Stage 2 Eligibility Criteria for patients

Exclusion Criteria:

  1. Patients unable to give written consent or lack capacity to consent;
  2. Patients for palliative/best supportive care only following surgery.
  3. Pre-morbid developmental or acquired/traumatic neurologic disorder (e.g. autism, stroke or dementia/cognitive impairment); 
  4. Pre-morbid major psychiatric disorder (e.g. schizophrenia); 
  5. Impaired vision and/or hearing that would interfere with task participation (determined by interacting with participant on screening and medical history)
  6. Impaired facial recognition (i.e. prosopagnosia) using a separate test from the OCS-Bridge screening tool, where a score of ≤5 on immediate assessment of neutral face recognition would suggest a deficit requiring exclusion.

Chief investigator

Chief Investigator: Prof Stephen Price

Contact details

Clinical Trials Coordinator: Glenn Harden
Email: [email protected]