Every year about 2,000 young people aged 13-24 years in England are diagnosed with cancer, which is the main cause of death in this age group apart from accidents. Despite the implementation of new models of service delivery over the last 10 – 15 years for the care of young people with cancer, there is limited evidence for the benefit of these services. The Cohort study focuses on variations in the young person’s perspectives of care depending on where they were treated.
The BRIGHTLIGHT Cohort study recruited 1,114 young people across 97 NHS Trusts across England diagnosed between July 2012 and December 2014. Of these, 830 young people went on to complete the first BRIGHTLIGHT Survey.
What were our aims?
The aim of the BRIGHTLIGHT Cohort study is to determine if there are relationships between the amount of specialist care young people receive and their:
-Quality of life
-Satisfaction with care
-Quality of care
-Clinical outcomes, such as survival
-Experience of care
-Ability to achieve social and educational milestones
The Cohort study is also:
-Examining geographic and socio-demographic inequalities in accessing specialist care
-Evaluating the cost and cost effectiveness of specialist care to the NHS, young people and their families
What did we do?
The Cohort Study gathered data from various sources until young people were three years post-diagnosis:
What young people have completed over the three years of their involvement with BRIGHTLIGHT:
What information did we collect?
The BRIGHTLIGHT Survey was developed specifically for this study with members of the Young Advisory Panel (YAP). Questions in the first survey asked about diagnosis, place of care and experience of care as well as information about how the young person feels, how supported they were and generally about their lives (work, school, relationships). After the first survey, if young people were no longer receiving cancer care they are only asked about how they feel and the general questions about their lives.
More details about the survey can be found here.
The BRIGHTLIGHT Surveys are available free to academics and non-commercial organisations from this link; scroll to the bottom to choose which wave survey you want to look at or download.
The Cost of Care Questionnaire and Cost Record were developed specifically for BRIGHTLIGHT and document how much young people and families have had to pay on top of their normal expenses because of the cancer diagnosis, such as travel to the hospital. These will be made available at the end of 2018 when analysis is complete.
What were our findings?
A total of 1,114 young people were recruited from 97 hospitals across England. There were challenges to recruitment that were not anticipated so recruitment took 12 months longer than expected. We undertook an additional study to understand the barriers to recruiting young people, which are reported in detail, accessible via this link. In summary, while we have a clinical service that accommodates teenagers and young adults, the research networks are modelled around children and adult oncology. We have been working with the NIHR to better understand this arrangement and developing strategies to increase access for TYA to research.
Data collection for the cohort ended in March 2018. Patient reported data was available for 830 young people at wave 1. A description of the cohort is available through this link. Analysis of the cohort is nearing completion and results will be available in 2020.