Burden of disease experienced by patients following a watch-and-wait policy for locally advanced rectal cancer: A qualitative study

Patient-reported outcome measures (PROMs) are increasingly being used in routine cancer care to evaluate treatment and monitor symptoms, function and other quality of life (QoL) aspects. For rectal cancer patients following a Watch-and-Wait (W&W) program, there is no suitable PROM. Insight into patient experiences with this program is an essential step of PROM development. With this qualitative study we aimed to identify the most important functional outcomes and QoL aspects that rectal cancer patients experience during the W&W program.

This study had a qualitative research design with semi-structured interviews to explore the patients' view regarding functional outcomes and QoL during the W&W program. We chose semi-structured interviews to ensure that certain topics were discussed while still allowing patients to discuss everything they wanted to share.

Locally advanced rectal cancer patients who are enrolled in the W&W-program will be interviewed by telephone using a semi-structured interview guide. All interviews are digitally audio-recorded, transcribed verbatim and coded. A thematic approach is used to analyze the data and identify themes and subthemes of importance to patients.

In this study, we aim to identify Watch-and-Wait patients’ experiences and functional outcomes during their follow-up period and how the disease, its treatment, and the Watch-and-Wait program effects their daily life. Findings of this study can inform the development of a PROM for Watch-and-Wait patients to be used in clinical care.

For this study we used semi-structured interviews to assess functional outcomes and experienced QoL. For these interviews we used a predefined interview guide.

There was no set time point at which participants were interviewed. We conducted the interviews with participants between 3 - 60 months of follow-up. We chose for this set up because we are interested in the experience of patients at different moments in the watch-and-wait program.

A purposive sampling technique was used to ensure a variety of patients with a range of characteristics, representing the watch-and-wait population.