The Role of Health Literacy in Gastrointestinal Cancer Patients' Surgical Journey: A Qualitative Study.

OBJECTIVE

Examine the role of low health literacy in surgical cancer care.

BACKGROUND

Disparities exist in surgical cancer care in the Deep South, focused here on the states of Alabama and Mississippi. Low health literacy is prevalent in this region and is associated with worse surgical outcomes.

METHODS

We conducted semi-structured interviews with gastrointestinal cancer patients and providers to explore the influence of health literacy on the surgical journey. Participants were recruited using a purposeful sampling with a snowball-recruitment approach. Verbatim interview transcripts were coded with NVivo 12.6 Plus using inductive thematic analysis to develop a codebook, followed by content analysis of the coded data. A constant comparative method was employed to ensure that saturation in the data was achieved. The inter-coder agreement was established at the recommended 90%.

RESULTS

Thirty-six patients and 32 providers were interviewed, including 15 surgeons. In the preoperative phase, low health literacy contributed to patients' difficulty in understanding diagnosis, facilitating their own care, understanding costs/insurance, and delays in care. In the perioperative phase, low health literacy increased difficulty understanding treatment plans and created barriers to compliance with staged treatments. In the postoperative phase, low health literacy led to difficulty understanding complications and the need for more follow-up. Common subthemes included difficulty following instructions and the usefulness of visual aids and teach-back methods.

CONCLUSIONS

Cancer providers and patients highlighted the role of health literacy in all phases of the surgical journey, particularly in creating barriers to understanding key components of cancer care. Interventions to address these barriers will be critical to improve care for low health literacy patients.