Patient organisation comments

Patient organisation comments

Responses were received from 2 patient organisations, 1 of which stated that some patients associated with the organisation are likely to have used point‑of‑care or home‑use faecal calprotectin (FC) tests. They commented that a focus group of people with inflammatory bowel disease (IBD) responded positively to the ease of use and convenience offered by the tests.

The representatives from both organisations thought that the tests had the potential to improve health outcomes, but 1 stated that there is not yet enough evidence for this. Both noted the potential negative implications of using the tests such as anxiety and false positives leading to unnecessary invasive procedures.

One representative stated that these tests offer people with IBD more convenience and fewer hospital visits. Point‑of‑care testing could provide quicker responses during a single clinic or GP appointment, and home‑use FC tests offer people a sense of control and improved understanding of their condition.

One patient organisation noted that some people may find testing unpleasant and some may not have access to smartphones.

People who work full-time, have young families or cannot drive were identified as benefiting most from the tests. Children were also identified also benefiting through a reduced need for blood samples.

Both organisations stated that point‑of‑care and home‑use FC tests are a major service variation to the current UK standard of care; 1 organisation observed that the NHS pathway may need to change to fully benefit from patient-specific, real-time data.