Patient Reported Outcomes - patients and caregivers (PROACT) study 3
Research type
Research Study
Full title
Patient Reported Outcomes in cancer, impact of Age and Carer role demands associated with Treatment (PROACT) Study 3
IRAS ID
205889
Contact name
Valerie Shilling
Contact email
Sponsor organisation
University of Sussex
Duration of Study in the UK
1 years, 0 months, 0 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/partner, family member, 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 the broader implications that different treatment regimens might have for patients and caregivers. Not only could this inform decision-making about treatment options but would also highlight the types of support required by both patients and caregivers. As yet there is no valid and reliable way to measure these impacts.
We have already developed two new questionnaires to assess patient and informal caregiver impact. These were developed through qualitative interview studies with patients and caregivers and through collaboration with advisers with lived experience of cancer or caring for someone with cancer. We now need to evaluate how well the new questionnaires measure the things that our previous research suggested were important and see how well these new scales perform compared to other less specific methods of assessment.
This study will ask a large number of patients with advanced cancer and caregivers to complete the new questionnaires together with others that are sometimes used in clinical practice and research but which were designed to measure other aspects of wellbeing.
We will ask participants to complete the questionnaires three times over a two month period. This enables us to see how our new measures perform over time; whether they are reliable if completed twice close together and whether they are able to detect change in wellbeing if completed two-three months apart in participants whose situations are changing.
These comparisons are important to ensure that when people use our questionnaires, they can be confident that they are measuring wellbeing and impact with a reliable questionnaire.REC name
London - Queen Square Research Ethics Committee
REC reference
16/LO/1125
Date of REC Opinion
6 Sep 2016
REC opinion
Further Information Favourable Opinion