Development and Evaluation of a Survey to Assess Survivor Knowledge Change After Survivorship Care Plans: WiSDOM-B (Wisconsin Survey of cancer DiagnOsis and Management in Breast cancer)

Abstract

The oncology community has increased efforts to inform survivors about long-term risks and planned follow-up after cancer treatment. Survivorship care plans (SCPs) have been recommended since 2005, yet the benefits of implementation are only now being emphasized. SCPs are hypothesized to enhance patient knowledge. The Wisconsin Survey of Diagnosis and Management in Breast Cancer (WiSDOM-B) was developed to measure changes in breast cancer survivor knowledge pre- and postdelivery of an SCP. The WiSDOM-B was developed with input from oncologists (medical, radiation, and surgical), patient advocates, cancer survivors, and survey design experts. Initially, nine patients evaluated survey content, and modifications were made to enhance clarity. Subsequently, 38 patients were enrolled in a randomized pilot trial assessing SCP impact on knowledge of diagnosis, treatment, late effects, and follow-up (WiSDOM-B) and satisfaction with knowledge (existing survey). The WiSDOM-B was developed using feedback from multiple stakeholders. Baseline knowledge was poor and remained stable in the control arm. There was a suggestion of increased survivor knowledge following receipt of SCPs in the intervention arm (68.4 vs. 74.4%). Change was not statistically significant compared with the control arm. Despite knowledge deficits, baseline satisfaction with knowledge was high for both groups, with 100% of patients being satisfied/very satisfied with information provided. Satisfaction did not change significantly following SCP receipt. The WiSDOM-B assesses survivor knowledge of cancer diagnosis, treatment, follow-up, and side effects. It will be a useful tool for future studies assessing the impact of care plans on survivor knowledge.