Patient Reported Outcomes - patients and caregivers (PROACT)
Research type
Research Study
Full title
Patient Reported Outcomes in cancer, impact of Age and Carer/role demands associated with Treatment (PROACT)
IRAS ID
186435
Contact name
Valerie Shilling
Contact email
Duration of Study in the UK
2 years, 1 months, 31 days
Research summary
This research is about measuring the impact of advanced cancer and its treatment on patients and their informal caregivers (e.g. spouse, close friend). The management of advanced cancer can affect many aspects of life such as finances, work status and patients’ own caring roles with family or friends.
It is important to understand these broader implications for patients and caregivers. This could help when discussing different treatment options and ways to support both patients and caregivers, but we need a good way to measure them.
The aim of this study is to develop two new questionnaires to do that; one for patients and one for caregivers. The research will involve patients with advanced ovarian or lung cancer or advanced malignant melanoma and the person they consider their main source of care and support.
There are two parts to the research. In the first study we will interview participants about what is important to their quality of life and wellbeing, what aspects of life are most important and how these have been affected by cancer. We will discuss a range of topics including finances, their career and their social life among other things. We will use these interviews to generate lists of possible items for the questionnaires.
In study two, we will ‘test’ the topics that participants thought were important in study one on a new group of people. Participants will be asked to discuss why they think items on the list are important or not, and whether they are easy to understand or distressing in any way. Only items that are thought important and acceptable will be considered for inclusion in the final measures. This is called item-reduction. This will allow us to finalise the items for the two questionnaires, which we will evaluate in future research.
REC name
London - Queen Square Research Ethics Committee
REC reference
15/LO/1323
Date of REC Opinion
2 Sep 2015
REC opinion
Favourable Opinion