Perceived well-being of patients with advanced illness, the Results: of the first national well-being assessment in palliative care in The Netherlands

Background: The Dutch National Program in Palliative Care II (NPPZII) aims to 1) raise awareness of palliative care and 2) ensure accessible, appropriate care for all in need across diverse settings. An annual national wellbeing assessment is a key part of NPPZII’s ongoing evaluation.
Aim/Research question or hypothesis:
To evaluate the feasibility of a national wellbeing assessment and gain insights into the multidimensional symptoms and concerns of patients in the palliative phase.
Methods: A cross-sectional survey was conducted in the Netherlands from October 12 to November 4, 2024. Patients with incurable illnesses and limited life expectancy, regardless of diagnosis or care setting, were eligible. Hospitals were encouraged to include both oncology and non-oncology wards for diversity. Wellbeing, symptoms, and concerns were assessed using the Utrecht Symptom Diary (four-dimensional), a validated tool that includes the Dutch Adapted Edmonton Symptom Assessment System and five socio-existential concerns based on the Ars Moriendi model. Descriptive statistics were applied for data analysis.
Results: In the first week, 154 patients (mean age 73, 57% female) completed the online questionnaire. Cancer was the primary diagnosis for 77%. While 70% of home-based patients reported slight daily activity impairment, those in hospitals and hospices faced greater limitations. Most patients were aware of their palliative status, though only hospice patients (63%) reported a life expectancy of less than three months, a criterion for hospice care.
Wellbeing (table1) was poorest among hospitalized and hospice patients, while home-based patients reported better wellbeing. Hospice patients had the lowest life value scores, and symptom intensity was highest in hospitalized patients, followed by hospice patients.
Discussion: Preliminary results highlight differences in wellbeing and symptom burden across settings. Routine symptom assessments could enhance symptom management in palliative care. Future national assessments may foster continuous awareness of the significance of symptom assessments and appropriate care in the palliative phase.