WP 3.2: Key performance indicators for bowel dysfunction and other late effects following colorectal cancer treatment

The Danish Health and Medicines Authority explicitly described that the aim of follow up beyond cancer treatment is to detect and manage both cancer recurrence and long-term sequelae (1). The patient perspective using patient reported outcome measures (PROMs) is pivotal in the follow-up program for assessment of QOL and late adverse effects and has gained widespread use in both medical and surgical oncology (2). During the recent decade, our research group has developed a series of Patient Reported Outcome Measures (PROMs) covering pelvic organ functions, including gastrointestinal-, bladder- and sexual dysfunction, stoma function, and pain (3-6). The Low Anterior Resection Score (LARS score) was the first developed by our group at Aarhus University Hospital (7). It is now validated and translated into more than 30 languages and used in a large number of trials worldwide (8). Items included in the scores and the weight of each item are determined by their impact on quality of life. Thereby, the scores are not only simple and easy to use, they also very much reflect the patient perspective of symptoms and impact on QOL.

ePROMs are acceptable to both patients and staff, save much time and add value from the patient perspective, and have proven to be an effective and reliable data source on national level within the Danish Cancer Society National Research Centres for late adverse effect following pelvic organ cancers (9). Since 2019, more than 3760 colorectal cancer patients have been screened and enrolled in the prospective database, now holding 9821 sets of PROMs. Proof-of-concept from these dedicated centres has significantly impacted the understanding and management strategies with a patient centred approach for late adverse effects following colorectal cancer (10).

We want an even better focus on the most clinically important domains and specific questions related to late effects within the comprehensive lists of PROMS used in the current database. Identifying key indicators for late effects and downsizing the database will be mandatory to make the database sustainable implementing PROMs and ease the use in clinical practice.

Awarded to:Peter Christensen (Aarhus University Hospital) – CFA3

Awarded grant to support VIP personnel.