[Trajectories of health-related quality of life and symptom burden in patients with advanced cancer towards the end of life: longitudinal results from the eQuiPe study].

Abstract

The number of individuals with advanced cancer is increasing, making palliative care more important. However, there is limited knowledge in the Netherlands about the quality of care received by patients in the palliative phase. This is why the Netherlands comprehensive cancer organization (IKNL) started the 'eQuiPe study' to understand the experienced quality of care and quality of life of patients with advanced cancer and their relatives to further improve palliative care.

Methods: Patients with advanced cancer (stage IV) and their relatives were asked to complete questionnaires regarding quality of care and quality of life every three months in 40 Dutch hospitals.

Results: The quality of life of patients (n=1108) with advanced cancer declines, particularly in the last three months of life, accompanied by an increase in symptom burden. Quality of life is strongly associated with continuity of care, advance care planning, and open communication about end-of-life situations. Additionally, there is a relation between the well-being of patients and that of their relatives (n=836), which emphasizes the importance of a family-centered approach in palliative care.

Discussion: This is the first study to prospectively and longitudinally explore experienced quality of care and quality of life in patients with advanced cancer and their relatives. The key lessons learned from the eQuiPe study indicate that patients and relatives should be regarded as a whole, with attention given to the four dimensions of quality of life (physical, psychological, social and spiritual). Continuity of care must be warranted to provide patients and their relatives with a better support network. Advance care planning is essential in this context.