Metastatic or locoregional recurrent anal cancer

The QLQ-ANL27 is a HRQoL instrument for assessing the acute and long-term sequelae of anal cancer treated with chemotherapy and radiotherapy (CRT). The QLQ-ANL27 is usable, reliable, valid and acceptable across different geographical regions and has been translated into 16 languages.

We have now started work involving patients with metastatic or recurrent/persistent anal cancer with the following objectives:

1. Identify the HRQoL issues of importance and relevance to patients with metastatic anal cancer or those with extensive local or locoregional recurrence treated with systemic therapies.
2. Investigate whether the existing EORTC QLQ-ANL27 is suitable for use in the context of metastatic or locoregional recurrent anal cancer or whether this measure needs to be supplemented with additional items.

So far 39 people have taken part in the research (Comprising People with anal cancer, professionals, and relevant experts). People have taken part from the following countries.

• Denmark
• Greece
• India
• Jordan
• Norway
• UK

We aim to soon have additional participants from Italy and Lithuania. But we are always open to new collaborators so please get in touch if you are interested in taking part

Current status:

We have completed the first part of our study (Phase 1a), to identify all possible health related quality of life issues that may affect this group of people. Now (in Phase 1b) we are recruiting new people to participate in our research to ask them which of these issues are most important and relevant to them.

We aim to complete the current phase of our research by summer 2026.

Then in Phase 2 the study team and other personnel from the EORTC QLG will determine whether the existing EORTC QLQ-ANL27 is sufficient for this patient group and if not operationalize the issue list from Phase 1b into supplementary items as necessary

All study activity will be completed by the end date of 31st of December 2026

If you would like more information about our work, please get in touch with the study coordinator Daniel Aze (D.D.Aze@soton.ac.uk).

Anal cancer is rare and for most people with this cancer, treatment with chemotherapy and radiotherapy (CRT) in combination is successful. Patients often experience short-term and long-lasting problems affecting their quality of life. For a small percentage of these patients (around 15%), the cancer spreads or comes back again. This project is interested in the quality of life of these patients.