Burden, cognitive complaints, and supportive needs in dyads of older patients with hematological malignancy and their primary caregivers: A cross-sectional multicenter study

Hematological malignancies (HM) occur mostly in older patients; aging is potentially associated with loss of autonomy and cognitive impairment. However, the role, burden, and supportive needs of primary caregivers (PC) of older patients with HM have rarely been investigated. Thus, our main objective was to measure associations between the instrumental, educational, and emotional unmet needs of PCs of older patients with various HM and the quality of life (QoL) in these dyads, and, secondarily, to explore related factors.

This multicenter cross-sectional study was offered to all patients over 65 years diagnosed with any HM, treated or not, having a PC, and able to fill out a self-questionnaire. Questionnaires were given to outpatients, who passed them on to their PC to fill in and return. Questionnaires assessed burden, cognition, quality of life, tasks for which help is needed, and needs from the PC's perspective.

Among 104 included patients, only 59 questionnaires of dyads were analyzable. The median age of patients was 76 years and of PCs was 70 years. PCs were mainly the spouses (n = 36/59). Few PCs stated they needed support: 10% required emotional support (higher when PC had cognitive complaint, p = 0.001), 18% instrumental support (higher when patients were male, p = 0.05 or PC had cognitive complaint, p = 0.01) and 24% educational support. The median EQ-5D-5L global score was 65 in patients and 80 in PCs. The patients' self-perceived burden (SPB) had a median at 5/10 (IQR = 7). When the patient was male, the Zarit burden score was higher (p = 0.002), as well as disrupted schedule (p = 0.05), financial problems (p = 0.03), and health problems (p < 0.001), and self-esteem lower (p < 0.001) at Caregiver Reaction Assessment (CRA) sub scores. An overall cognitive complaint concerned 54.4% of patients and 33% of PCs. There was a higher proportion of cognitive complaints in male patients (70% vs 33% in females, p = 0.01), who reported a significantly higher level of responsibility in their last professions and were more likely to be under active cancer treatment.

This study highlights the need to explore cognitive complaints before and during treatment and potentially provide neuropsychological assessment and educational support in these dyads.