Testing a new questionnaire to measure how much a person’s health condition affects the quality of life of their partner and family members.
What’s it about?
When a person is living with a health condition, the lives of partners and family members are often affected too. This important impact is often overlooked.
A team at Cardiff University has created a questionnaire, the ‘Family Reported Outcome Measure’ (FROM-16), to measure this impact. It needs further testing before it can be used by clinicians to better support family members.
Am I eligible to take part?
All people with epilepsy and their partners and family members, aged 18 and older, living in the UK can participate in the study.
As the researchers want to test the FROM-16, they are looking for people with epilepsy whose partner or family member are also willing to take part. Unfortunately, if your partner or family member is not willing, you will not be able to take part on this occasion.
What will I have to do?
This study involves answering a short survey. In the survey, you will answer some basic questions about yourself and your epilepsy. Partners or family members will answer the FROM-16 questionnaire and another standard questionnaire.
How do I get involved?
Is there a deadline?
The survey can be accessed until 30 September 2021.
Who is conducting the research?
Mrs Rubina Shah, PhD student at Cardiff University (ShahR45@cardiff.ac.uk).
Who has reviewed this study?
The study has been reviewed and approved by the Cardiff School of Medicine Ethics Committee: SREC reference: 21/19.