Exploring the patient experience of locally advanced or metastatic pancreatic cancer to inform patient-reported outcomes assessment

Joseph M. Herman, Helen Kitchen, Arnold Degboe, Natalie V.J. Aldhouse, Andrew Trigg, Mary Hodgin, Amol Narang, Colin D. Johnson

Research output: Contribution to journalArticlepeer-review

5 Scopus citations


Purpose: Pancreatic cancer and its treatments impact patients’ symptoms, functioning, and quality of life. Content-valid patient-reported outcome (PRO) instruments are required to assess outcomes in clinical trials. This study aimed to: (a) conceptualise the patient experience of pancreatic cancer; (b) identify relevant PRO instruments; (c) review the content validity of mapped instruments to guide PRO measurement in clinical trials. Methods: Qualitative literature and interviews with clinicians and patients were analysed thematically to develop a conceptual model of patient experience. PRO instruments were reviewed against the conceptual model to identify gaps in measurement. Cognitive debriefing explored PRO conceptual relevance and patients’ understanding. Results: Patients in the USA (N = 24, aged 35–84) and six clinicians (from US and Europe) were interviewed. Pre-diagnosis, pain was the most frequently reported symptom (N = 21). Treatments included surgery, radiation, chemotherapy, and immunotherapy. Surgery was associated with acute pain and gastrointestinal symptoms. Chemotherapy/chemoradiation side effects were cyclical and included fatigue/tiredness (N = 21), appetite loss (N = 15), bowel problems (N = 15), and nausea/vomiting (N = 15). Patients’ functioning and well-being were impaired. The literature review identified 49 PRO measures; the EORTC QLQ-C30/PAN26 were used most frequently and mapped with interview concepts. Patients found the EORTC QLQ-C30/PAN26 to be understandable and relevant; neuropathic side effects were suggested additions. Conclusions: This is the first study to develop a conceptual model of patients’ experience of metastatic/recurrent pancreatic cancer and explore the content validity of the EORTC QLQ-C30/PAN26 following therapeutic advances. The EORTC QLQ-C30/PAN26 appears conceptually relevant; additional items to assess neuropathic side effects are recommended. A recall period should be stated throughout to standardise responses.

Original languageEnglish (US)
Pages (from-to)2929-2939
Number of pages11
JournalQuality of Life Research
Issue number11
StatePublished - Nov 1 2019


  • Disease conceptual model
  • Oncology
  • Pancreatic cancer
  • Patient experience
  • Patient-reported outcome (PRO)
  • Qualitative research

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health


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