Development of a questionnaire for AYAs (14-39 years) with cancer
Research type
Research Study
Full title
Development of a module to supplement the EORTC Core instrument for the assessment of Health Related Quality of Life in Adolescents and Young Adults (AYAs) aged 14-39 years with cancer
IRAS ID
248803
Contact name
Anne-Sophie Darlington
Contact email
Duration of Study in the UK
3 years, 0 months, 0 days
Research summary
Summary of Research
This study addresses the specific Health-related Quality of Life (HRQoL) concerns facing Adolescents and Young Adults (AYA) with cancer. Our previous research has found that there are issues specific to AYAs with cancer (aged 14-25) that are currently not covered by the European Organisation for Research and Treatment of Cancer core measure (EORTC QLQ C30). In our previous research, we defined AYAs as 14-25 years. Following the advice of international experts on AYA oncology, we have decided to extend our work to align it more closely to international definitions of AYAs which goes up to 39 years.This first phase of the research is largely exploratory, where we will extend our previous research and gain insight into the important issues for young adults with cancer aged 26-39 years.
The second phase of the research will involve reviewing the 77 issues identified in our previous research with AYAs aged 14-25 and developing a list of questionnaire items.
The third phase will involve pilot testing the AYA questionnaire with a larger group of patients aged 14-39 years recruited from the UK and across the world.Summary of Results
We recognize that the impact of cancer on adolescents and young adults (AYAs) is likely to be different from that of children and older adults. We have asked AYAs with different cancers from countries across the world to tell us how their cancer and its treatment have affected them. We used these experiences to develop a questionnaire to measure quality of life of AYAs aged between 14 and 39 years. AYAs with cancer have also helped us to review the questions included in the draft questionnaire to ensure that we measure what matters to them and that we are asking the questions in the right way. The final version of the questionnaire includes 29 questions measuring physical, social, and emotional aspects of quality of life. The questionnaire asks AYAs questions about activity limitations, disruptions to life, worry about cancer and the future, how they feel about themselves (their self-esteem), the impact of cancer on their relationships and positive outlook.REC name
HSC REC A
REC reference
19/NI/0091
Date of REC Opinion
24 May 2019
REC opinion
Further Information Favourable Opinion