A qualitative study recently published in Supportive Care in Cancer reported that despite a demonstrable knowledge gap between health care practitioners and patients with esophageal cancer, most patients felt satisfied with their knowledge on the topic.
The study used responses from 11 patients seen at the Trinity St James Cancer Institute in Dublin, Ireland, to determine themes that could explain the discrepancy in knowledge between practitioners and their patients. Three themes emerged based on the participants’ responses: opportunity, ability, and priority.
The theme of opportunity largely dealt with continuity of care and accessibility. Patients felt they had fewer unanswered questions when they experienced good continuity of care. According to the study, “Some patients also highlighted the relationship with the cancer nurse specialist specifically, who was not only instrumental in ensuring that patients felt heard by addressing questions/concerns promptly but also communicated effectively within the HCP team.”
This theme primarily dealt with the patients’ preferences regarding the amount of information they received about their diagnosis. Some preferred to know little about the details of their treatment, while others, described as ‘high-monitors’ because of their desire to be informed, preferred to know as much as possible about their diagnosis and prognosis. Interestingly, almost all patients felt they had adequate knowledge of their cancer despite a demonstrable knowledge gap between them and their providers.
The ability to retain information about their diagnosis, treatment, and prognosis was largely related to the pacing and volume of information delivered at any given time. Patients felt more informed if their questions were answered, if information was provided at a time that made sense, or when they were more receptive to new information.
This study highlights the interesting finding that the quantity of knowledge surrounding a diagnosis isn’t the main factor that patients consider when determining whether they felt adequately informed. Instead, patients valued the timing of information delivery and the ability to ask questions to a dedicated practitioner, such as a clinical nurse specialist. They also reported differing desires about the information they received about their cancer.