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

Abstract

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.

Causes and Ways of Death in Patients With Head and Neck Cancer

“…17,19,29 The incidence of euthanasia in the entire cohort was 5.4% (n = 70), but in people who had HNSCC as the underlying cause, it was more than 9%, which is more comparable to the 12.8% in our recent study among patients with HNSCC receiving palliative care. 30 This difference is not surprising, as previous reports also showed higher proportions of euthanasia in patients with cancer. [34][35][36] However, if compared with regional numbers, we found that there was a marginally higher rate of euthanasia among patients with HNSCC in this cohort compared with all patients with cancer in South Holland (the Netherlands).…”

“…Our previous studies among patients receiving palliative care revealed a decrease in hospital deaths from 38.0% of all patients receiving palliative care in 2008 to only 7.4% in 2020 . These results also strengthen the feasibility to reduce hospital deaths within our own curative cohort of patients (27.9%).…”

“…The incidence of euthanasia in the entire cohort was 5.4% (n = 70), but in people who had HNSCC as the underlying cause, it was more than 9%, which is more comparable to the 12.8% in our recent study among patients with HNSCC receiving palliative care . This difference is not surprising, as previous reports also showed higher proportions of euthanasia in patients with cancer .…”

Experience with eHealth in the palliative care pathway for head and neck cancer patients – a mixed-methods study

“…This phase starts when cure is no longer possible or when patients refuse curative treatment. The palliative phase is rather short, with a median survival time of 4-5 months [4][5][6]. Given the unique nature of HNC, with a wide range of speci c cancerrelated symptoms, special consideration should be given to end-of-life care [7].…”

“…We provide structural multidisciplinary care aimed at symptom regulation and psychosocial support. Since the introduction of the Expert Center, important aspects of palliative care have been improved, including enhanced doctor-patient relations, better psychosocial support, and fewer hospital admissions [5,8,9]. Further, patients are more often able to die at their preferred place, most often in their home [5,8].…”