Exploring Information Needs of Patients With Cancer and Family Caregivers: A Descriptive and Network Analysis of End-of-Life Inquiries.

OBJECTIVES

To characterize patient and caregiver end-of-life (EOL) information needs through analysis of inquiries received by the National Cancer Institute's Cancer Information Service (CIS).

SAMPLE &

SETTING

The sample consisted of CIS inquiries received between September 2018 and June 2024 that were (a) initiated by patients or caregivers and (b) coded as focusing on the EOL phase of the cancer continuum.

METHODS & VARIABLES: Descriptive and network analyses were conducted to characterize CIS inquiries and explore patterns of co-occurrence related to subjects of inquiry.

RESULTS

Of the 81,836 inquiries received by the CIS during the study period, 3% (n = 2,333) focused on EOL; of these, 90% were initiated by caregivers. Patterns of subject-of-inquiry co-occurrence related to palliative care/hospice, finding healthcare services, cancer-directed therapies, coping, and clinical trials were observed. Patient and caregiver network structures were highly correlated (r = 0.799, p < 0.001), suggesting similar patterns of information needs.

IMPLICATIONS FOR NURSING: Tailoring informational support and bundling common information needs are crucial strategies to optimally support patients with cancer and caregivers at the EOL. These findings highlight the need for nurse-led, novel care delivery models that can address unmet needs and improve the provision of support, such as caregiver-focused, community-based navigation; delivery of palliative care concurrent with cancer-directed therapies; and embedded caregiver clinics within cancer centers.