Pancreatic Cancer (update of QLQ-PAN26)

Project background and aim:

The EORTC QLQ-PAN26 was developed to assess health-related quality of life (QoL) for people with pancreatic ductal adenocarcinoma (PDAC). However, since its publication in 1999, treatments for PDAC have evolved e.g., newer chemotherapy regimens. We wish to assess whether the EORTC QLQ-PAN26 still covers the most important QoL issues for people with PDAC and/or needs updating.

Methods:

We are following the EORTC QLG guidelines for module development. A phase I-II study is being conducted across 10 sites across the UK and Europe, India and the Middle East. We have conducted:

1) A systematic review of QoL measures in trials and studies of PDAC, with particular focus on reviewing studies that explored the lived experience for people with PDAC to understand what may impact on their (QOL).
2) Interviews with Health Care Professionals (HCPs).
3) Interviews with people diagnosed with PDAC.
4) Further interviews with a new group of people diagnosed with PDAC and HCPs to review the list of QOL issues and ask to rate which were the most important/relevant issues to include in a questionnaire.

A list of 71 QoL issues was developed in phase 1 and compared to the existing QLQ-PAN26. With our clinical experts and patient and carer panel, we have compiled a revised list of 31 QoL issues for inclusion in an updated version of the QLQ-PAN26 has been produced. This will then be piloted in a future phase III study.
Progress to date:

We have completed our study and are currently drafting our final report for approval before we submit a paper for publication. Our study has found:

1). Most HRQOL issues in the QLQ-PAN26 remain important and relevant for people with PDAC but a few (body image, satisfaction with care) are redundant and recommended to be removed). Other issues (e.g., sexual functioning) have been revised.

2) The current English version and wording of the QLQ-PAN26 have been brought up-to-do date with wording informed by the recommended questions in the EORTC Item Bank. We will collaborate with our colleagues who have expertise in translation to ensure the revised module can be translated into different languages.

3) Some new HRQOL issues to reflect symptoms of chemotherapy and radiotherapy introduced since the original development will be added. We will also incorporate the WISP project to enable free text for low prevalent symptoms as more treatments (e.g., immunotherapy) are introduced into the treatment of PDAC.

In conclusion, we have produced an updated phase 2 module with 31 questions, which reflect symptoms and side-effects and the impact on people’s physical and psychological health, specific to PDAC. This is intended for use alongside a general cancer QOL questionnaire, the EORTC QLQ-C30. We will now begin planning for our phase 3 study which will further the questions in the updated module are the most relevant and the module can be completed by patients with PDAC (e.g., questions are not difficult to answer) across different countries and languages.

We have completed the study which has involved a literature review and interviews with people with PDAC across eight countries to find out from their own experiences, what are important and relevant issues to include in an updated quality of life (QOL) questionnaire. We also asked health care professionals across different countries to share their views and opinions.

We produced a revised list of 71 QOL issues which we asked a new group of people with PDAC and professionals to identify what should be included in a new (updated) questionnaire.

We examined our results following careful rules to decide whether an QOL issue should be included in a provisional questionnaire. Our recommendation is for a provisional questionnaire of 31 QOL issues to be further tested in a new group of people with PDAC in a phase 3 pilot study. This study is being planned and will involved people with PDAC across a range of different countries and languages.

Current status:
Phases 1 and 2 are completed and we are writing up our final report and paper.

We will be developing our phase 3 application with anticipated submission in Spring 2026.

We are looking for potential collaborators to join us in preparing for our phase 3 study. For further details, please contact Dr Sam Sodergren S.C.Sodergren@soton.ac.uk or Professor Deborah Fitzsimmons D.Fitzsimmons@swansea.ac.uk

We are updating the content of a questionnaire designed to measure quality of life (QOL) in people with pancreatic cancer.

We want to include symptoms and issues that are important to their quality of life for people with pancreatic cancer and are receiving treatment such as chemotherapy.

We have talked to people with pancreatic cancer, health care professionals, alongside reviewing the literature to find out what should be covered in an updated questionnaire.

After speaking to patients and health care professionals, we have updated the questionnaire so that it reflects quality of life issues for people who are undergoing current treatments for pancreatic cancer.