Guided online self-help for young people with cancer and depression
Research type
Research Study
Full title
Guided Online Self-Help: a Cancer and Depression Intervention for Young People (GOSH CANDI)
IRAS ID
206854
Contact name
Anna Coughtrey
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children NHS foundation Trust & The UCL Institute of Child Health
Duration of Study in the UK
1 years, 1 months, 15 days
Research summary
Depression in young people with cancer is common but neglected. Every year 2,234 young people aged 13-24 years are diagnosed with cancer in the UK. They have an increased risk of depression following diagnosis, throughout treatment and in remission. However, depression often goes undiagnosed and evidence-based treatments are rarely provided. This has serious consequences for both physical and psychological functioning, leading to significantly reduced quality of life.
Effective talking therapies for young people without cancer exist and have been adapted for depressed adults with cancer. We would like to see whether methods for treating depression in young people without cancer work just as well for those that do. Existing evidence-based interventions for young people without cancer include a 'stepped care' component, where guided self-help (including online cognitive-behavioural therapy) is recommended for mild-moderate symptoms of depression in young people. However, these interventions have not yet been evaluated in depressed young people with cancer.
The purpose of this study is to test the feasibility of an online guided self-help intervention to treat mild to moderate depression in young people with cancer. This intervention will be tested and evaluated in a case-series of up to 40 young people with depression and cancer.
Lay summary of study results: Nine young people used the website and completed pre-post measures of depression and quality of life. Participants had a range of different cancers and all had mild-moderate low mood. The majority of participants were currently in remission or had recently ended active treatment for cancer. All nine reported some improvement in mood following use of the website, although change in pre-post scores was sometimes difficult to delineate from changes in physical health.
In particular, it is of note that participants used the website in a range of ways – some choosing to complete all modules on a weekly or fortnightly basis whereas others selected the most appropriate modules and completed them in a shorter time period. The most popular modules were: doing something to feel better (37%), relaxation (27%), problem solving (18%), and learning about distress (18%).
This case series was conducted alongside a similar Quality Improvement project. Results from both projects highlighted the following key areas for treatment adaptation:
It is not acceptable to young people to pathologise distress in young people with cancer. Rather than solely measuring pre-post change in distress, measures of usefulness and acceptability are more important.The website is best conceptualised as a resource rather than an intervention. This allows young people to ‘dip in and out’ of different modules, take control over their own mental health and removes concerns about who has clinical responsibility for the young people who use the website. This is important in terms of scalability and spread.
Young people are interested in sharing their stories and engaging with other young people with cancer. Therefore we included options for sharing experiences on the website and this increased user ratings of the website.
The key adaptations we made to the resources have been to include cancer-specific examples. This has important implications for spread as it suggests that we can generalise the findings to other long term physical health conditions. We are currently exploring using a similar approach in young people with epilepsy, drawing on learning from this project.
REC name
London - Riverside Research Ethics Committee
REC reference
16/LO/1159
Date of REC Opinion
4 Aug 2016
REC opinion
Further Information Favourable Opinion