Frontiers in Hematology · Published 2026-06-22 · DOI 10.3389/frhem.2026.1813321
Alan J. Poots, Samantha Nier, Sarah Gunn, Sam Salek
BackgroundReceiving a leukaemia diagnosis and undergoing treatment impact patients and their informal carers. Our objective was to explore and quantify the impact on the quality of life (QoL) of adult family members or partners of persons living with acute or chronic leukaemia.MethodsWe conducted a global, cross-sectional online study distributed via three leukaemia patient advocacy networks. Adult informal carers completed the Family Reported Outcome Measure (FROM-16) tool. Higher FROM-16 scores indicate poorer QoL, ranging from 0 to 32, with a critical threshold of 17 indicating a “very large effect”. We summarised the demographic variables and caregiving characteristics and assessed their relationships with the FROM-16 scores using Kruskal–Wallis tests with Bonferroni adjustment. Eta-squared (η2) was used to assess the effect size.ResultsA total of 511 respondents entered the dataset: 59% (299/511) supported someone with acute leukaemia (“acute group”), whilst 41% (212/511) supported someone with chronic leukaemia (“chronic group”). The mean age of all informal carer respondents was 48.1 years [standard deviation (SD) = 13.9]. The acute group tended to be younger (mean = 43.8 years, SD = 11.8) than the chronic group (mean = 54.2 years, SD = 14.4). The majority of informal carer respondents were women (73%, 353/485). The median FROM-16 score was 14, and 38% (195/511) of the respondents scored above the critical threshold of 17. The acute and chronic leukaemia groups differed (median = 16 vs. 8, respectively), with a moderate-to-large effect size (η2 = 0.122, p = 2.92E−15). Providing higher caregiving hours was associated with greater FROM-16 scores (i.e., lower QoL), with large effect sizes in both groups (acute: η2 = 0.130, p = 5.32E−6; chronic: η2 = 0.232, p = 5.65E−7). Giving medication was associated with moderate effect sizes (acute: η2 = 0.071, p = 3.98E−6; chronic: η2 = 0.094, p = 9.56E−6), whilst providing personal care showed small to moderate effects (acute: η2 = 0.036, p = 9.93E−4; chronic: η2 = 0.092, p = 1.17E−5).ConclusionOur findings highlight a need for tailored support to reflect the differing burdens faced by informal carers of people with acute and chronic leukaemia. Policymakers and clinicians could integrate informal carer wellbeing into leukaemia care strategies, promoting holistic, family-centred support services.
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Poots, A., Nier, S., Gunn, S., et al. (2026). Associations with the quality of life of adult family members or partners (informal carers) of people with leukaemia: results from a cross-sectional online global survey. Frontiers in Hematology. https://doi.org/10.3389/frhem.2026.1813321