Presenting decision-relevant numerical information to Dutch women aged 50-70 with varying levels of health literacy: Case example of adjuvant systemic therapy for breast cancer

• Published in: PloS one Vol. 19; no. 9; p. e0309668
• Main Authors: van Strien-Knippenberg, Inge S, Timmermans, Daniëlle R M, Engelhardt, Ellen G, Konings, Inge R H M, Damman, Olga C
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 03.09.2024; Public Library of Science (PLoS)
• Subjects: Adjuvant treatment; Aged; Biology and Life Sciences; Breast cancer; Breast Neoplasms - drug therapy; Breast Neoplasms - psychology; Cancer; Cancer therapies; Care and treatment; Chemotherapy; Chemotherapy, Adjuvant; Comprehension; Decision Making; Diagnosis; Evaluation; Female; Format; Health aspects; Health Literacy; Humans; Information systems; Literacy; Medical research; Medicine and Health Sciences; Middle Aged; Netherlands; Side effects; Social Sciences; Survival; Visual effects; Visualization; Netherlands
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0309668

If communicated adequately, numerical decision-relevant information can support informed and shared decision making. Visual formats are recommended, but which format supports patients depending on their health literacy (HL) levels for specific decisions is unclear. The aim of this study is to investigate: 1) the effect of survival rates and side-effects presentation formats on comprehension and 'feeling informed'; 2) differential effects among women with higher/lower HL, with adjuvant systemic breast cancer therapy as case example. Two online experiments among women from the Dutch population without a history of breast cancer were conducted. Experiment 1 had a 3 (survival rate format: text block-bar graph-icon array) x 2 (HL: low-high) between-subjects design. Experiment 2 had a 5 (side-effects format: no probability information-probability information in numbers with or without a visualisation-probability information in numbers with or without a visualisation accompanied by a description of the side-effects) x 2 (HL: low-high) design. Primary outcomes were comprehension and feeling informed (Experiment 2 only). Formats were previously designed in co-creation with patients. In Experiment 1, presentation format did not affect gist or verbatim comprehension. Higher HL was associated with higher gist comprehension. Experiment 2 showed an interaction between presentation format and HL on 'feeling informed'. When provided with visualised probability information without a description of the side-effects, women with lower HL felt better informed than women with higher HL. Visual formats did not enhance comprehension of survival rate information beyond a well-designed text block format. However, none of the formats could overcome HL differences. When designing decision-relevant information, visualisations might not necessarily provide an advantage over structured numerical information for both patients with lower and higher HL. However, a deeper understanding of presenting side-effect information is warranted.