Inclusion criteria, exclusion criteria and study summary
The measure for Health-Related Quality of Life (HRQoL) in pancreatic cancer (EORTC QLQ-PAN26), was developed by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group in 1996. As new treatments are now available for pancreatic cancer new symptoms and side-effects are being reported. A review is needed to see if the EORTC QLQ-PAN26 needs to be updated. We will invite people diagnosed with Pancreatic Duct Adenocarcinoma (PDAC; n= 95), and senior Health Care Professionals (HCP) with PDAC expertise (n= 20) for interviews in an international study. Patients will be purposely recruited by a member of the local research or clinical team while visiting the hospital as an inpatient or outpatient or they will be contacted by their clinician. Interviews will be carried out at the hospital, over the telephone, video conference or at home. In phase I, patients will be asked to talk about how PDAC has affected their HRQoL. Patients will be asked about their experience of PDAC, treatments, symptoms, side effects, their functioning and well-being. HCPs will be asked to share their experience of treating patients with PDAC and HRQoL issues. Both patients 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 HRQoL questionnaire EORTC QLQ-C30. In phase II, any new content that has been proposed from phase I will be written in a style and format that fits with the EORTC QLG assessment system. This new content will then be presented in form of a list that will be reviewed by the project team and a patient panel, who decide in agreement what content will be included and how it they will be put together to form an updated questionnaire.