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
178588
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. The management of advanced cancer impacts on many diverse aspects of life such as finances, work status and patients’ own caring roles with family or friends. There is also significant impact for informal caregivers and other family members. It is important to understand these broader implications of disease and treatment to inform consideration of different treatment options and supportive interventions for both patients and caregivers. There is however a need for well validated measures to do so.
The aim of this study is to develop two scales to measure these broad impacts; one measuring patient quality of survival and one measuring impact for informal caregivers. The research will involve patients with advanced ovarian or lung cancer or advanced malignant melanoma and the person they consider their primary caregiver, or person offering most support.
The research will comprise two qualitative interview studies. In the first we will interview participants about what is important to their quality of life and wellbeing, what aspects of life are most important and how they have been affected by their or their care recipient’s 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 potential scale items to take forward to study two.
The purpose of study two is to review and reduce this list of items. Participants will be asked to discuss whether and why they think items on the list are important or not, whether they are easy to understand or distressing in any way. We will use these interviews to finalise the list and construct the two measures which we will evaluate in future research.REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
15/LO/1001
Date of REC Opinion
15 Jun 2015
REC opinion
Unfavourable Opinion