Chief Investigator - Dr Valerie Shilling

PRRS - additional development of the jobs and career subscale

Patient Roles and Responsibilities Scale (PRRS) - further development of the jobs and careers subscale

Continuing advances in cancer treatments mean that more people are living longer with cancer and the associated impacts on broad aspects of life, such as caregiving responsibilities for children or others, financial wellbeing, and the ability to continue or return to work. It is well recognised that assessment of the quality of this extended survival using well-validated measures is important to understand how broader aspects of patients' lives are managed and affected, and support patients with this.

We have previously developed and validated the Patient Roles and Responsibilities Scale to measure these impacts (Shilling et al, 2018). You can read more about how the measure was developed by selecting Completed Studies from the drop down menu and then selecting PROACT.

The scale comprises three core subscales completed by all respondents, and the jobs and career subscale completed only by those in current paid employment. We, and other research groups, have used the scale in a number of observational studies and have collected data from many hundreds of respondents. We have recently pooled data from the studies conducted at SHORE-C to examine how well the items in the jobs and career subscale are performing as individual items and whether combined together the subscale has good validity. This is also called psychometric performance and tells us whether the questionnaire is good at measuring the topic of interest.

We identified some items that were not performing well enough and that we think should be revised to improve the scale as part of an ongoing development and validation process. It is important to revise the items rather than remove them, as they relate to topics that patients in the earlier development studies thought were important to measure.

In order to revise the scale, we want to conduct cognitive interviews with people who have had a cancer diagnosis and who were in paid employment at the time of their diagnosis and treatment. During the interviews we will discuss the existing and potential new items using standard cognitive interview techniques. This will include the 'think aloud technique' (where participants verbalise the thought processes they go through in answering a questionnaire item) and specific probes around comprehension (how easy it is to understand), retrieval (how easy it is to recapture events relating to the specific question topic), judgement (how easy it is to arrive at an answer) and response options (how easy it is to match the desired answer to one of the choices available) to assess the proposed new items. The purpose of this process is to minimise measurement error by ensuring that research participants interpret the questions as intended and are able to provide meaningful responses.

Findings from these interviews will enable us to refine the jobs and career subscale through direct input from patients, ready for validation in future studies.