This research is about measuring the impact of cancer and its treatment on patients and their informal caregivers (e.g. spouse, partner, family member, close friend). Having 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 of disease and treatment. Not only could this inform decision-making about treatment options but would also highlight the types of support required by both patients and caregivers. There is however a need for well validated measures to do so.
The aim of the PROACT studies is to develop, evaluate and validate two scales; one measuring patient quality of survival, incorporating these broader impacts and one measuring impact for informal caregivers.
The first stage was to conduct two systematic reviews of existing patient reported outcomes (PROs); one in patients with cancer, the other in impact on caregivers. We then conducted two qualitative interview studies with patients with advanced cancer and their nominated primary informal caregiver to inform the development of the scales. In the third study, we ‘tested’ our new questionnaires in a preliminary evaluation and validation study with 135 patients and 110 caregivers. Both questionnaires performed well in this initial evaluation.
We are now running another large validation study with a new group of patients and informal caregivers, including patients with different types and stages of cancer. This next stage in validation is essential to ensure that the questionnaires are suitable for use in future research and practice across different types and stages of cancer. This study will be collecting data throughout 2018.
PROACT Poster Presentations 2017
Dr Val Shilling presented a poster at the 20th annual European Congress of International Society for Pharmacoeconomics and Outcomes Research in Glasgow on 8th November 2017. Click here to view the poster titled:
Dr Val Shilling presented two posters at the ASCO Cancer Survivorship Symposium: Advancing Care & Research in San Diego California on the 28th January 2017. To view the posters, click on the titles below:
PROACT Poster Presentations 2016
Dr Val Shilling presented a poster at the International Society for the Quality of Life (ISOQOL) 23rd Annual Conference in Copenhagen, 19th - 22nd October 2016.
Photo: Dr Val Shilling with the poster on display at the conference. Click here to view the poster which is titled:
Patient Reported Outcomes in Cancer, Impact of Age and Carer Role Demands Associated with Treatment (PROACT): Phase 1 Development of Scale Items
Photo: Dr Val Shilling is pictured on the right discussing the poster with a delegate.
Rachel Starkings presented this poster at the Inaugural Postdoctoral Research Day on the 2nd of November 2016 and was awarded first prize on the day.
Click here to read the current Study Newsletter September 2017
Click here to read the Study Newsletter Aug 2016