Research Involvement Network opportunity: Testing a new questionnaire to measure how much a person’s health condition affects the quality of life of their partner and family members

Type of opportunity

Members of the Research Involvement Network are invited to complete a short online questionnaire being conducted by a researchers at Cardiff University.

About the study

The lives of partners and family members are often affected by a person having a health condition, but this important impact is often ignored. This team in Cardiff have created a questionnaire, the ‘Family Reported Outcome Measure’ (FROM-16) to measure this impact. However, it needs further testing before it can be used by clinicians to better support family members.

In the survey, the patient is asked to answer some basic questions about themselves and then partners or family members answer the FROM-16 as well as another standard questionnaire.

How will the study benefit people affected by pancreatic cancer?

This questionnaire developed by Cardiff University will help clinicians to understand and care for the health and social needs of partners and family members of people affected with pancreatic cancer.

The information from this research will allow us:

• To let clinicians know what the different FROM-16 scores mean so that affected partners and family members can be given the right kind of support.
• To be able to use the questionnaire when finding out how well new treatments work.
• To measure the wider impact of diseases on the family

The team hope that eventually this information will encourage improved patient and family care and that clinicians will be better able to choose treatments that are in the best interests of the patient and his/her family members.

Who is conducting this research?

This study is being conducted by Rubina Shah as part of her PhD project under the supervision of Prof Andrew Y Finlay (Chief investigator) and Prof Sam Salek.

When will this opportunity be taking place?

The deadline for completing the survey is 30th September 2021.

Who can take up this opportunity?

All people affected by pancreatic cancer and their partners and family members aged 18 and older living in the UK. Please note the survey has to be completed by both the patient and their family member/loved one.

What next/who to contact:

You can access the survey and more information here.

If you have any questions please contact: Rubina Shah