Perceptions of a Health Care Notebook from Female Breast Cancer Survivors with Cognitive Impairment

Strengthening communication between providers and patients, especially those with cognitive impairment, is required given care complexity and fragmentation across the care continuum. Therefore, determining patient perceptions about the Siebens Health Care Notebook (SHCN), a tool to support self-management and strengthen communication and care continuity, is fundamental to understanding SHCN usability. Participants were breast cancer survivors in a study evaluating a 6-week cognitive rehabilitation program, who reported cancer-related cognitive impairment (Functional Assessment of Cancer Therapy-Cognitive Function–Perceived Cognitive Impairment (PCI) subscale < 59). Participant groups were alternately assigned to receive the SHCN (intervention) or not (control). SHCN recipients completed a 3-item qualitative perception survey at program completion. Both groups were surveyed at baseline, program completion, and 4 weeks later about communication with physicians. Scores were compared using Wilcoxon rank-sum tests. No baseline demographic or PCI score differences occurred between intervention (n = 29) and control (n = 16) groups. Of 22 (76%) who completed the SHCN perception survey, 100% endorsed it as useful in tracking health information, as helpful, and would recommend it to others. No group differences in communication activities with physicians were demonstrated. Women reporting cognitive impairment after breast cancer treatment perceived the SHCN as a beneficial self-care tool and would suggest it to others. Communication activities with physicians did not change during the study’s short duration. Future research is needed to evaluate SHCN features contributing to helpfulness and details on use, including two-way communication activities between patients and physicians, across the care continuum.