Learnings From Longitudinal Patient-Reported and Clinical Outcomes in Palliative Head and Neck Cancer Care

Maarten C. Dorr*, Aniel Sewnaik, Diako Berzenji, Kira S. van Hof, Tim Grevelink, Robert J. Baatenburg de Jong, Marinella P.J. Offerman

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

2 Citations (Scopus)
26 Downloads (Pure)


Objective: Patients with palliative head and neck cancer experience many symptoms in a short period of time. Longitudinal data on patient-reported outcomes in this phase are lacking. The aim of this study is to use structurally obtained patient-reported outcome data combined with clinical patient data and obtain insight in patient-reported outcomes, survival, circumstances of death, and interventions and treatment during the palliative phase in order to improve the quality of end-of-life care and patient-centered counseling. Study Design: Longitudinal observational cohort study. Setting: Tertiary cancer center. Method: Quality of life was prospectively collected using the European Organization for Research and Treatment of Cancer QLQ-C15-PAL. Tumor- and patient-specific data were retrospectively collected. Descriptive statistics, linear mixed models, and regression analyses were performed. Results: A significant deterioration was found in global health status, physical functioning, fatigue, dyspnea, appetite loss, and constipation over time. However, emotional functioning improved. Median survival was 5.1 months, and only a low percentage of in-hospital death was observed (7.8%). Higher global health status at intake was associated with prolonged survival. Conclusion: Structural measurement of patient-reported outcome together with clinical outcomes provides unique insight, which enables improvement of patient-centered counseling and care.

Original languageEnglish
Pages (from-to)294-302
Number of pages9
JournalOtolaryngology - Head and Neck Surgery (United States)
Issue number2
Early online date29 Jan 2022
Publication statusPublished - Aug 2023

Bibliographical note

Funding Information:
We thank Aaron Boon for his linguistic corrections.

Publisher Copyright:
© 2022 The Authors. Otolaryngology–Head and Neck Surgery published by Wiley Periodicals LLC on behalf of American Academy of Otolaryngology–Head and Neck Surgery Foundation.


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