The management of advanced disease can be complex, impacting on many diverse aspects of life such as finances, work status and patients’ own caring roles with family or friends. There is also likely to be significant impact for informal caregivers and other family members. It is important to understand these broader implications of disease and treatment; for example 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; one measuring patient quality of survival, incorporating these broader impacts, and one measuring impact for informal caregivers.

The first stage of the study was to conduct two systematic reviews of existing patient reported outcomes (PROs); one in patients with advanced 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. We are now running a large evaluation study to gather preliminary validation data for the new scales. We hope to have the results from this study in the autumn of 2017.


PROACT Poster presentations

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:

Uncertainty about the future for patients with advanced cancer and their informal caregivers: A qualitative view.

Measuring the impact of extended cancer survival on broader aspects of life and wellbeing: The PROACT Study.

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

^ Top