Uncertainty and the unmet informational needs of patients with cancer of unknown primary (CUP): a cross-sectional multi-site study

Lisa Guccione, Krista Fisher, Linda Mileshkin, Richard Tothill, David Bowtell, Stephen Quinn, Anna DeFazio, Chris S. Karapetis, Nicholas Wilcken, Madhu Singh, Christopher Steer, Bo Gao, Mark Warren, Ian M. Collins, Narayan Karanth, Cindy Bryant, Penelope Schofield

Research output: Contribution to journalArticlepeer-review

4 Citations (Scopus)
20 Downloads (Pure)

Abstract

Objective: This study aimed to determine the healthcare experiences, quality of life, and psychosocial needs of patients with cancer of unknown primary (CUP) early after diagnosis; comparing their experiences to patients with advanced cancer of a known primary (non-CUP control patients) and published general population reference data where available. Methods: This study was a cross-sectional, multi-site study comparing CUP patients (n = 139) compared to non-CUP controls (n = 45). Demographic, clinical information and patient-reported outcome questionnaire data were collected at baseline. Results: Differences in healthcare experienced were found between CUP and non-CUP controls with CUP patients reporting higher scores for unmet medical communication/information needs compared with non-CUP control patients (p = 0.013) as well as greater uncertainty in illness (p = 0.042). Whilst no differences were found between CUP and non-CUP controls on the EORTC and PROMIS measures, of those that ‘received written information about your cancer…’ and asked ‘…how useful was it?’ fewer CUP patients reported finding the information useful 40% vs 61%, and more were likely to not have received written information at all 59% vs 32%; (p = 0.002). Additionally, of those that found information about their cancer online, fewer patients with CUP reported finding it useful 32% vs 48% control patients (p = 0.005). Conclusions: CUP patients have unmet medical communication/information needs and greater uncertainty in illness but do not differ in health-related quality of life domains compared to patients with advanced cancer of a known primary.

Original languageEnglish
Pages (from-to)8217–8229
Number of pages13
JournalSupportive Care in Cancer
Volume30
Issue number10
DOIs
Publication statusPublished - Oct 2022

Keywords

  • Cancer
  • Cancer experiences
  • Cancer of unknown primary
  • CUP
  • Oncology
  • Quality of life
  • Supportive care

Fingerprint

Dive into the research topics of 'Uncertainty and the unmet informational needs of patients with cancer of unknown primary (CUP): a cross-sectional multi-site study'. Together they form a unique fingerprint.

Cite this