Update of the EORTC QLQ-PAN26

The EORTC Quality of Life (QOL) module for patients with pancreatic cancer (EORTC QLQ-PAN26) has been available for use in clinical trials and studies as a Phase 3 QOL module since 1999.

As more treatments (such as chemotherapy)  are now available for pancreatic cancer since it was originally developed, new symptoms and side-effects are being reported. We are conducting a study to assess whether the content of the EORTC QLQ-PAN26 still reflects the important and relevant QOL issues for patients who are undergoing treatment for pancreatic cancer; and whether the module needs to be adapted (e.g. to include treatment side-effects).

Our project is being undertaken with collaborators in the UK, Germany, Norway, Sweden, Spain, Italy, USA, Cyprus, India, Switzerland and Morocco.

Following the EORTC guidelines for module development. This project is focused on phase 1 and 2.

In phase 1, we are conducting literature reviews and interviews with people with pancreatic cancer and health care professionals (HCPs) to find out what are the most important and relevant QoL for people with pancreatic cancer receiving current treatment and care.

We are inviting people diagnosed with Pancreatic Duct Adenocarcinoma (PDAC; n=95) who are receiving or have received current treatments for PDAC including:

• Surgery, followed by chemotherapy
• Chemotherapy before surgery
• Chemotherapy alone
• Palliative radiotherapy and/or chemotherapy
• Immunotherapies
• Supportive care such as pain control or pancreatic enzyme replacement therapy.

We will ask participants to talk to our researchers about their experience of PDAC, treatments, symptoms, side effects, their functioning and well-being. We are also talking to HCPs with expertise in PDAC (n=20) to share their experience of treating patients with PDAC and issue that they believe affect patient’s QoL most.

Both patient participants and HCPs will be asked to rate the content of the EORTC QLQ PAN26 for importance and relevance, and comment on issues on the more general cancer HR QoL questionnaire EORTC QLQ-C30. From these interviews, we will find out if the EORTC QLQ-PAN26 needs to be updated to include different or new QOL issues for people with PDAC.

In phase 2, we will develop with our project team and patient panel an updated EORTC QLQ module for patients with pancreatic cancer. This will be submitted for approval by the EORTC QLG as a phase 2 module.

Further work will then be conducted to pilot and validate the updated EORTC pancreatic cancer QOL module for use in international clinical trials and studies

We have started the literature review and interviews with patients and health care professionals.

We are doing a literature review and interviewing patients with pancreatic cancer and health care professionals specialising in the area to see if the PAN26 questionnaire for quality of life needs to be updated, that is, if any new concerns have come about in line with treatments or if any questions are no longer needed or useful to ask.