Health-related quality of life during the last year of life of patients with hematological malignancies: results from the PROFILES registry
Patients with hematological malignancies often face an unpredictable disease trajectory including multiple treatments. Both the disease and these treatments may result in a high symptom burden and lower health-related quality of life (HRQoL). Little is known on how these patients evaluate their HRQoL in their last year of life. Insight is essential to identify palliative care needs, reduce their symptoms and improve HRQoL. Therefore, this study aims to assess HRQoL in the last year of life of patients with hematological malignancies, and its associated sociodemographic and clinical factors.
Longitudinal HRQoL data from deceased patients with lymphoma or multiple myeloma were retrieved from the PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship) registry, using 3 cohorts (diagnoses between 1999-2010; 2014-2018 and 2020-2024; censuring date for analyses was 1/1/2025). These data were linked to the Netherlands Cancer Registry. Patients completed one or multiple HRQoL questionnaires at varying time points during their last year of life.
HRQoL was assessed using the EORTC QLQ-C30 questionnaire, which assesses functional domains, symptoms and overall quality of life. Changes in HRQoL during the last year of life were analyzed using linear mixed models, adjusted for relevant sociodemographic and clinical factors, and compared to an age- and sex-matched normative population.
A total of 434 questionnaires from 359 deceased patients were analyzed (mean age 67 (SD10), 69% male). Most questionnaires were completed 4-9 months before death. Patients were diagnosed with multiple myeloma (36%), aggressive lymphoma (32%), indolent lymphoma (21%), or chronic lymphatic leukemia (11%). 78% of patients had a partner and 23% were highly educated; 52% had 2 or more comorbidities. On average, patients completed 1.2 questionnaires, ranging from a year until 4 days before death.
Preliminary analyses showed that, during the last year of life, role, emotional, and physical functioning declined significantly, while fatigue, pain, and dyspnea significantly increased, all with clinically relevant differences.
Compared to the normative population, patients showed lower functioning and higher symptom scores already one year before death (Figure 1). Further in-depth analyses will be presented at DHC 2026.
Patients with hematological cancers show a marked decline in HRQoL during their last year of life, with increasing symptom burden and decreasing functional status. Our findings highlight the importance of timely palliative care and can support clinicians in tailoring care to patient needs near the end of life.
