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

Abstract

Abstract Purpose Our 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 to enable them to stay as long as possible in their trusted home environment. This includes digital monitoring using patient-reported outcome measures. Our research adds to the limited literature on qualitative feedback and patient-reported experiences with palliative HNC care. Methods In this mixed-methods study we evaluated our palliative care pathway. In total, 56 head and neck cancer patients in the palliative care phase and 49 next-of-kin were included. We evaluated their experiences with a patient-reported experience measure that included open questions. Results The face-to-face consultations on the day of the palliative diagnosis were positively experienced by most patients and next-of-kin. One-third missed at least one topic during these consultations, such as discussing life expectancy. During the remote follow-up, the majority felt safe with this care: they were able to sufficiently clarify their problems and, if necessary, timely action was taken. However, 35% of patients and 46% of next-of-kin considered the provided psychosocial support to be insufficient. Conclusion Patients and next-of-kin were satisfied with most aspects of the palliative care, and remote care seems a promising means of delivery. Key areas needing attention are discussing life expectancy and providing psychosocial support. Future research will focus on better understanding patients’ needs during specific moments in the palliative trajectory to optimally deliver personalized and value-based healthcare.