Chief Investigator - Dr Valerie Shilling
HORIZONS was a large quality of life study led by the University of Southampton and funded by Macmillan Cancer Support. The study recruited 3,442 patients with breast or gynaecological cancer or non-Hodgkin lymphoma, prior to the start of treatment. The study aimed to understand how a diagnosis of cancer and its treatment affect a person’s life over time, using questionnaires to measure health and wellbeing. Participants completed a range of questionnaires before the start of treatment, subsequently at 3, 12, 18 months, and annually from 2 years.
At the 3 year timepoint, participants were asked to complete the Patient Roles and Responsibilities Scale (PRRS). This is a measure developed and validated by SHORE-C. The PRRS was developed to capture broad ‘real life’ impacts of cancer and its treatment, such as caring for others and financial and employment responsibilities. It is intended to be of use for both research and practice, such as to aid clinical conversations around treatment and intervention.
The PRRS was developed and initially validated with patients with advanced cancer (breast, lung, gynaecological cancer or melanoma) (Shilling et al, 2018) however the measure was developed with the intention to be sufficiently generic to apply to all disease stages and cancer types. You can read about how the measure was developed by selecting Completed Studies from the drop down menu and then selecting PROACT.
While we have shown the scale to be valid with this group of people in this context, the HORIZONS dataset provides the opportunity to further validate the measure in a much larger group of patients diagnosed with earlier stage cancer, and also test in a novel cancer group, non-Hodgkin’s lymphoma.
In this project, we plan to conduct secondary data analysis to further validate the Patient Roles and Responsibilities Scale using data from the 3 year time point in the HORIZONS study. For the purpose of the planned analysis, we will request access to data from the PRRS and other quality of life questionnaires collected at this time point. The analysis will ask questions of the data such as: do the scores from items within a subscale relate appropriately to other items in the subscale i.e. is the subscale measuring an underlying construct or concept such as financial wellbeing; do the scores on the questionnaire overall relate as expected to other similar measures, e.g. if a person scores highly on the PRRS, do they also score highly on another quality of life measure? We will also run some analysis called factor analysis. This looks at all the different items in the questionnaires and groups items that fit together into different ‘factors’. We previously identified 3 factors which now make up the different subscales of the questionnaire. When we run the analysis to confirm this with new and more data, we want to test if the same three subscales are confirmed.
The overall objective of these analyses is to further test the quality of the PRRS questionnaire, to provide the research and clinical communities with further evidence on the reliability and validity of the measure. This is important for present and future users of the measure to be confident 1) in the construct validity of the measure, in particular the three subscales identified 2) its performance and appropriateness for use in cancer groups other than those previously validated.
No new data will be collected as part of this project. The dataset shared by Southampton University will be completely anonymised.
Current Stage:
Pre setup