Electronic Health in the Palliative Care Pathway for Patients With Head and Neck Cancer.

Abstract

Importance: The Expert Center of Palliative Care for head and neck cancer offers structural attention to patients' complex physical and psychosocial care needs. Patients are offered remote care, including digital monitoring using patient-reported outcome measures, to enable them to stay as long as possible in their trusted home environment. There is limited literature on qualitative feedback and patient-reported experiences with palliative head and neck cancer care, especially for remote care. To provide optimal palliative care, more information on this is needed.

Objective: To provide insight into the experiences of patients with head and neck cancer and their next of kin with a hybrid palliative care pathway.

Design, setting, and participants: A mixed-methods quality improvement study was conducted at a tertiary cancer center. The experiences of patients with head and neck cancer in the palliative phase as of June 2022 and next of kin of patients who had died between June 2021 and March 2022 were evaluated using a patient-reported experience measure that included open-ended questions.

Exposures: Hybrid palliative care pathway.

Main outcomes and measures: Experiences of patients and next of kin.

Results: Of 105 included participants, 54 (51.4%) were male, and the mean (SD) age was 67.2 (12.7) years. A total of 56 participants were patients and 49 were next of kin. The face-to-face consultations on the day of the palliative diagnosis were positively experienced by most patients and next of kin. A total of 42 of 102 participants (41%) and 24 of 79 participants (30%) missed at least 1 topic during consultations with their physician and oncology nurse, respectively, such as discussing life expectancy. During the remote follow-up, 71 of 92 (77%) felt safe with this care: they were able to sufficiently clarify their problems, and if necessary, timely action was taken. However, 17 of 48 patients (35%) and 21 of 46 next of kin (46%) considered the provided psychosocial support to be insufficient.

Conclusions and relevance: In this quality improvement study, patients and next of kin were satisfied with most aspects of the hybrid palliative care pathway, and remote care seemed to be a promising means of delivery. Key areas needing attention are discussing life expectancy and providing psychosocial support. These insights represent the initial steps toward gaining a deeper understanding of patients' needs during specific moments in a hybrid palliative trajectory. They may support health care professionals in optimizing personalized and value-based palliative care delivery.