Understanding the social outcomes of childhood cancer survivors
Research type
Research Study
Full title
Understanding the important social outcomes for childhood cancer survivors: an E-Delphi study
IRAS ID
297344
Contact name
Sarah Milner
Contact email
Sponsor organisation
University of Leeds
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research Summary
In the UK, more than 8 out of 10 children with cancer will survive to adulthood. However, the majority of these survivors will have health problems after they finish treatment. These include problems with their physical, mental and social health.
Social health problems are very important because they affect many areas of our lives and impact our physical and mental health. They can even affect our children. Despite this, they are not well understood.
Social health covers the parts of life outside of physical and mental health that are needed to provide happiness, satisfaction and a sense of fulfilment. This might include areas like having good friends.
So far, we don’t know what the most important aspects of social health are for people who had cancer as a child. We need to know this so that in the future we can provide the best support at the right time to maximise survivors' social health.
We are inviting people with different perspectives on the childhood cancer journey to develop a consensus on the most important aspects of social health for survivors. These people will come from four groups: adults who had cancer as a child, health professionals, social workers and teachers.
Survivors will be approached through the Leeds Teaching Hospitals long-term follow up service. Professionals will be recruited locally in Leeds and through a national working group.
Participants will be asked to complete online questionnaires which ask about aspects of social health. Patients and professionals have been involved in the questionnaire development. Over time, the aim will be to agree on which of these aspects are most important.
This consensus will be used to guide future research into the social health of survivors and best support these people to achieve their goals in life.
Summary of Results
Understanding the important social outcomes for childhood cancer survivors: an E-Delphi study
Background information
In the UK, more than 8 out of 10 children with cancer will survive to adulthood. However, the majority of these survivors will have health problems after they finish treatment including problems with their social health.Social health problems are very important because they affect many areas of our lives and impact our physical and mental health. Despite this, social health problems are not fully understood. Social health covers the parts of life outside of physical and mental health that are needed to provide happiness, satisfaction and a sense of fulfilment.
Initial work showed that it was not clear what the most important social health outcomes are for childhood cancer survivors. Learning about important outcomes is important so that research and services can be directed into the right places to best support survivors.
What was the aim of the study?
To generate an agreement on the important social outcomes for childhood cancer survivors.Who carried out the research?
This study was undertaken by researchers at the University of Leeds. It was funded by Candlelighters (registered charity no: 1045077) as part of the Chief Investigators PhD grant.Where and when did the study take place?
The study took place online between 08/03/22 and 25/07/2022.Was there patient and public involvement in the study?
Adults who had cancer as a child were core participants in the study. A childhood cancer survivor, medical professionals with relevant experience and teachers reviewed and supported development of the first-round questionnaire and participant information leaflets.Who participated in the study?
37 people took part in the study across four groups. These were: 1) adults who had cancer as a child 2) Doctors and nurses who look after children with cancer 3) Social Workers who support children with cancer 4) Teachers with experience educating children with cancer.What happened during the study?
People taking part completed three online questionnaires. These asked questions about the importance of particular areas of social outcomes e.g. education. Participants were shown the average answers of everyone taking part, their own answers and collected comments from the group at the start of rounds 2 and 3. This was to see if other people’s answers made them want to change their answers. Over time, this meant that a group agreement was reached on important social outcomes.What were the results of the study?
• The study developed an agreement on the important social outcomes for childhood cancer. It includes 36 different areas across six main categories: education, independence, work, relationships, community and lifestyle.
• The top three most important areas from across all categories were “having autonomy’, ‘being able to avoid social isolation’ and ‘being able to live independently’.
• There were some other important findings from the study:
o The important social outcomes for childhood cancer survivors and the general public are the same.
o Written comments showed that there can be a lot of barriers to people achieving good social outcomes after childhood cancer and these need to be explored more.How has this study helped?
The important social outcomes agreed upon in this study can be used to help direct research and NHS services into the most relevant areas. Important social outcomes being the same for survivors and the public should help encourage families and professionals to strive for normal social outcomes as much as possible following treatment.Further work
The results of this study are being used to develop questions for a series of interviews with childhood cancer survivors. These questions will focus on barriers to achieving good social outcomes in some of the areas found to be important in this study.Where can I learn more about this study?
To learn more about this study or further work, please email the research team at YSRCCYP@leeds.ac.ukThe study team sincerely thanks all participants for giving up their time to take part and providing such valuable insights.
REC name
West of Scotland REC 4
REC reference
21/WS/0143
Date of REC Opinion
23 Nov 2021
REC opinion
Further Information Favourable Opinion