Acceptance and Commitment Therapy for Neuro-Oncology Wellbeing
Research type
Research Study
Full title
Acceptance and Commitment Therapy for Young Brain Tumour Survivors: An Acceptability and Feasibility Trial
IRAS ID
266746
Contact name
Sophie Thomas
Contact email
Sponsor organisation
Nottingham University Hospitals
ISRCTN Number
ISRCTN10903290
Duration of Study in the UK
2 years, 5 months, 31 days
Research summary
What area is being studied?
Survival rates for childhood brain tumours are improving, but quality of life after treatment is the worst of all cancer survivors. Research on psychological treatments after cancer treatment is the top priority for young people who have had cancer.What research question is being addressed?
This study aims to find out if a psychological therapy called Acceptance and Commitment Therapy (ACT) delivered remotely via video-conferencing (like Zoom) is a feasible and acceptable treatment for young brain tumour survivors. The study also aims to find out how helpful ACT is for young brain tumour survivors’ health and wellbeing.How is it relevant and important to patients and public?
If remotely delivered ACT is acceptable and feasible for young brain tumour survivors it could help improve quality of life for many people living with the after-effects of brain tumour treatment.Who would be eligible?
We aim to include 72 participants aged 11-to-24 years old who have been diagnosed with a brain tumour and completed treatment at least 6-months before starting the study.Where will the study be conducted?
Participants will be recruited from principle brain tumour treatment centres in Bristol, Nottingham and Newcastle.How long will the study last and what will participants undergo?
The study will last for three years in total and each participant will be in the study for 12 months. Participants will have a 50:50 chance of being placed into one of two groups: Half the study participants will be offered up to 12 weekly sessions of ACT straight away and the other half will be offered ACT after a 12 week wait. The effect of ACT straight away will be compared to those waiting. Every 3-months participants will be asked to fill in some questionnaires about their health and experience of ACT.Summary of results
We recruited 48 participants to receive Acceptance and Commitment Therapy (ACT) across three sites- Nottingham, Newcastle and Bristol. We also opened our recruitment to people who have received treatment outside of these centres via the Charity’s social media channels. Approximately half of those recruited completed the therapy straight away and the other half, were control participants, and waited 12 weeks until they also received the therapy. Our study was funded by the Brain Tumour Charity.Due to the pandemic we changed our study so that young people received their therapy via video-call. We had always planned to offer some session this way given how far many patients live from their principal treatment centres. However, since the pandemic the study became fully remote. This also presented an opportunity to study the experience of receiving psychological therapy remotely.
Of the patients enrolling, 86% completed the therapy treatment (Nottingham 92%, Newcastle 83%, Bristol 88%). Of those referred and who were eligible, 77% consented to take part across three centres, demonstrating a high conversion rate.
Acceptability was rated highly with a total mean score of 38.5/40 on the Session Rating scales, and a range of 9.5-9.8/10 on each domain. On the Experience of Service Questionnaire, the majority of patients reported that they felt listened to, treated well, their views were taken seriously, the therapist was easy to talk to and the help received was good. The qualitative data (described below) was extremely helpful in further describing the experience of patients and the positive impact of the therapy.Our main aims were to find out whether this therapy was acceptable and feasible in the population. We also also added some questionnaire measures focusing on quality of life, emotional wellbeing and psychological flexibility. Of those enrolled 68% completed these at 12 weeks after therapy, 60% at 24 weeks, 48% at 36 weeks and 42% at 48 weeks. However, these did not show significant findings. We think this is due to not having enough participants for this kind of analysis but also because it is difficult to capture the benefits of this therapy on questionnaires even though we chose those we considered most applicable. The qualitative interviews seemed to capture the benefits of the therapy much better.
We did run a different type of analysis which looked at how all young people scored on our questionnaires at the end of the intervention compared with their scores at the beginning. Because this type of analysis does not involve any young people who had not had the intervention we cannot be confident that changes were the result of the intervention or due to the passage of time. However, these analyses found that young people had better rated quality of life, wellbeing, psychological flexibility (meaning they were not so impacted by difficult thoughts or feelings) and satisfaction with their relationships after they had received the intervention.
We also found that higher psychological flexibility upon entering the study was associated with higher quality of life and lower levels of mental health difficulties, as measured by our questionnaires. This suggests that providing support to increase psychological flexibility is important for young people who have experienced a brain tumour, and that interventions found to increase psychological flexibility, such as ACT, could be helpful in improving psychological health in this population.
We had always aimed to interview some of the young people as we expected it may be difficult to capture patients experience using questionnaires alone. When we adapted the study to deliver therapy remotely, we then knew it would also be important to also learn about this experience. A small amount of further funding was obtained from the CCLG to study this in more detail. We recruited 15 participants for interview and perspectives were also gathered from eight parents and the 4 clinical psychologists delivering therapy.
The transcripts were coded and grouped into themes, identifying four themes and eleven subthemes. Participants engaged in the research both because they thought it might help them and also because they wanted to “give back” to help others. They kept coming to sessions because they enjoyed the connection with their therapist and they found remote sessions convenient. Participants reported learning about themselves, what was important to them and ways to cope. They reported that the therapy calmed them whilst also making them feel energised and able to engage with what was important to them. Participants and parents regarded ACT highly. The Clinical Psychologists also viewed remotely delivered ACT as an appropriate, acceptable, and feasible intervention for young people with experience of brain tumour within the context of research, that would be generalisable to everyday clinical practice.
REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
20/EM/0237
Date of REC Opinion
24 Nov 2020
REC opinion
Further Information Favourable Opinion