Lead investigator: Dr Madeleine Adams, Children’s Hospital for Wales, Cardiff
Funded by CCLG and CCLG Special Named Funds include Team Jake, Angus’s Door and The Jenni Clarke Fund
Funded January 2019
Award: £71,489.80
The aim of this study is to develop a questionnaire which can be used as a measure of quality of life* (QoL) for children undergoing treatment for sarcoma. The Sarcoma Assessment Measure: Paediatric Version (SAM-Paeds) will be developed as an addition to the SAM tool which has already been designed for adults with sarcoma.
Currently, very little is known about QoL during treatment for sarcoma in childhood, and it is very important when designing treatment strategies that these issues are understood. This is particularly important because the upcoming international clinical trial for rhabdomyosarcoma (FaR-RMS) will measure QoL between the different radiotherapy randomisations (treatment arms) and in order to identify differences it is vital that a sensitive tool is used.
Once developed SAM-Paeds will be entered into the Far-RMS study to better understand QoL for patients during treatment and whether there is any difference in QoL scores between pre and post-operative radiotherapy.
The methodology comprises four stages:
- Meeting with patients and parents to find out the specific QoL issues that occur during treatment and using these discussions to formulate the initial questionnaire
- Item reduction – all the questions will be reviewed and some will be removed if felt not to be important or repetitive
- Questionnaire formatting and psychometric testing of the questionnaire. This uses specialist techniques to ensure questions are understood as intended
- Statistical testing to ensure reliability and validity of the questionnaire – this tests whether the questionnaire measures what it intends to.
Patients, parents and healthcare professionals looking after children with sarcoma will be involved in all stages of questionnaire development to ensure that all relevant issues are included within the questionnaire. There is a parent member of the study group who has been involved in the initial study design as well. The final version will be used in clinic appointments as well as research studies to identify areas where patients require support.
*In general, quality of life is the perceived quality of an individual’s daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social and physical aspects of the individual’s life.