Chief Investigator - Dr Valerie Shilling
Co-Investigator - Prof Dame Lesley Fallowfield
Co-Investigator - Prof Val Jenkins
Researcher - Rachel Starkings
Data Manager - Shirley May
Funder: Bristol Myers Squibb
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 then ran 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.
Current Stage:
Closed
Publication
Patient reported outcome measures for cancer caregivers: a systematic review https://doi.org/10.1007/s11136-016-1239-0Publication
Patient reported outcome measures of the impact of cancer on patients' everyday lives: a systematic review https://doi.org/10.1007/s11764-016-0580-1Publication
The pervasive nature of uncertainty - a qualitative study with patients with advanced cancer and their informal caregivers https://doi.org/10.1007/s11764-017-0628-xPublication
DEVELOPMENT AND VALIDATION OF THE PATIENT ROLES AND RESPONSIBILITIES SCALE IN CANCER PATIENTS https://doi.org/10.1007/s11136-018-1940-2Publication
DEVELOPMENT AND VALIDATION OF THE CAREGIVER ROLES AND RESPONSIBILITIES SCALE IN CANCER CAREGIVERS https://doi.org/10.1007/s11136-019-02154-4Publication
Insights into the use of social comparisons within an advanced cancer setting https://doi.org/10.1097/OR9.0000000000000006Poster
Patient reported outcome measures for cancer caregivers: A systematic review posters/Final PROACT ECCO 2.9.2015.pdfPoster
Measuring the impact of extended cancer survival on broader aspects of life and well being: The PROACT study posters/PROACT overview poster final.pdf Presented at ASCO Cancer Surviorship Symposium 2015Poster
Uncertainty about the future for patients with advanced cancer and their informal caregivers: A qualitative view posters/PROACTqualitative poster final.pdf Presented at ASCO Cancer Survivorship Symposium 2015Poster
Patient Reported Outcomes in Cancer, Impact of Age and Carer Role Demands Associated with Treatment (PROACT): Phase 1 Development of Scale Items posters/PROACT ISOQOL poster 2016.pdf Presented at International Society for Quality of Life Research Conference 2016Poster
Evaluation and validation of the proact measures for cancer patients and informal caregivers posters/PROACT ISPOR poster Nov 2017.pdf Presented at ISPOR 2017Poster
Patient Reported Outcomes in cancer, impact of Age and Carer role demands associated with Treatment (PROACT): The 'lucky' construct posters/Lucky Construct BPOS Poster.pdf Presented at British Psychosocial Oncology Society (BPOS) Conference 2017Poster
Evaluation of Construct and Structural Validity in the Patient Roles and Responsibilities Scale posters/Evaluation of Construct and Structural Validity in the PRRS.pdf Presented at International Society for Quality of Life Research Conference 2017Poster
Identifying trigger items from the Patient Roles and Responsibilities Scale posters/Indentifying trigger items from the PRRS.pdf Presented at British Psycosocial Oncology Society Conference 2020