Illness uncertainty and self-perceived burden were identified as factors that may be associated with reduced quality of life (QOL) for patients with chronic myeloid leukemia (CML). These study results were reported in the Journal of Clinical Nursing.
This descriptive study followed a cross-sectional design. Patients included in the study had been recruited from 4 university hospitals within Chongqing City, China, and were willing to participate. Participants were adults with chronic-phase CML who had been receiving treatment with tyrosine kinase inhibitors for 3 or more months.
Patients completed a self-reported survey involving demographic and clinical characteristics, uncertainty in illness, self-perceived burden, and QOL. The Mishel Uncertainty in Illness Scale, an abbreviated Self-Perceived Burden Scale, and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C-30) were instruments used to evaluate patient’s survey responses.
Two hundred and eighty participants were recruited for this study, among whom 248 (88.6%) responded to the survey and were evaluable in the analysis. These participants had a mean age of 39.98 years (range, 18 to 78). More than 24 months had passed since CML diagnosis in 77.0% of patients, and most patients (71.0%) were married. Approximately half (50.8%) had an education level of middle school or below.
The average QOL score in this population was 70.04 (SD, 17.89). The average illness uncertainty score was 54.26 (SD, 11.20), and the average self-perceived burden score was 34.20 (SD, 9.83). For illness uncertainty, the results translated into 23.4% of participants experiencing low illness uncertainty, 73.0% having moderate illness uncertainty, and 3.6% having high illness uncertainty. Self-perceived burden was considered mild in 23.4% of participants, moderate in 34.7%, and severe in 35.9%.
These factors showed some correlations with each other. QOL showed a significant, negative association with illness uncertainty (r, -0.448; P <.01) and with self-perceived burden (r, -0.407; P <.01). Additionally, illness uncertainty and self-perceived burden were directly associated with each other (r, 0.341; P <.01). The researchers also performed mediation analyses that found self-perceived burden to be a partial mediator between illness uncertainty and QOL.
“These findings suggest that interventions of decreasing illness uncertainty and self-perceived burden may have potential benefits in improving QOL among patients with CML,” the researchers concluded.
The researchers recommend regular assessment of illness uncertainty, self-perceived burden, and QOL in patients with CML, with extra attention to illness uncertainty due to its importance in QOL, which may be addressed through providing information. Patients should also receive support to reduce self-perceived burden, with cultivation of coping strategies in patients and involvement of their families or caregivers.
Zhang N, Tang XQ, Lu K, et al. Illness uncertainty, self-perceived burden and quality of life in patients with chronic myeloid leukaemia: a cross-sectional study. J Clin Nurs. Published online November 16, 2021. doi:10.1111/jocn.16123