Assessing QoL of informal carers of people with pancreatic cancer
Research type
Research Study
Full title
The PAN-CARER study - Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer: a prospective pilot study
IRAS ID
309503
Contact name
Sanjay Pandanaboyana
Contact email
Sponsor organisation
Freeman Hospital
Clinicaltrials.gov Identifier
9962, Newcastle Research office
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Around 10,300 people are diagnosed with pancreatic cancer each year in the UK. The cancer and its treatment inflict a significant physical, functional and emotional burden on patients. Research suggests that patients have many ongoing needs for support and care, but that these needs are not met by existing services. Family members often step in to fill this gap and provide support and care during and after treatment. Our research in other cancers shows that this informal caregiving can place a very heavy burden on carers. However, there are few studies in the international literature that have focussed on informal carers in pancreatic cancer, none of which have been conducted in the UK.
This pilot study will investigate the needs and quality of life among people caring for a loved one with pancreatic cancer. The ultimate goal of the project is to identify what services and supports informal carers need. By understanding this, our project will help to ensure that carers are well supported in their role and that patients receive the best possible support.
We will use two complementary research methods. Firstly, we will conduct a survey of 300 carers which will include questions related to the impact of caregiving, the needs of carers, and their quality-of-life. Secondly, 30 of these carers who complete the survey will also take part in an interview to explore their experiences in more depth.
This application has been shaped by PPI advice from the Pancreatic Cancer UK Research Involvement Network. During the study, we will involve the RIN representatives in reviewing carer-facing documents, reflecting on emerging results and identifying the key important messages from the study, preparing lay summaries of the results and advising on dissemination.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
22/EE/0072
Date of REC Opinion
18 May 2022
REC opinion
Further Information Favourable Opinion