Background: Arguably one of the most understudied and most difficult to treat and manage cancers is Cancer of Unknown Primary (CUP). CUP patients have to cope with diagnostic uncertainty, limited treatment options and a poor prognosis. Limited existing research indicates that CUP patients have higher levels of psychological morbidity, and poorer quality of life than those with metastatic disease of a known primary. Moreover, oncologists find it challenging and uncomfortable to communicate the diagnostic uncertainty and limitations of CUP management. This study investigated the impact of patient-reported communication experiences and sociodemographic factors on anxiety and depression in CUP patients.
Methods: A sample of 108 patients with CUP who completed baseline data of a prospective, longitudinal cohort study was used. Seven independent variables (written information about cancer, information about support/self-help groups, sensitive diagnostic communication, patient’s understanding of cancer, age, CALD background, marital status) and two dependent variables (depression and anxiety) were included in the univariate and multivariate analyses.
Results: A third of patients did not understand their cancer diagnosis (37%) and over half were not given written information (57%). 28% would have liked information about support groups but did not receive any and 23% felt their diagnosis could have been communicated more sensitively. Multivariate analyses revealed that poorer understanding of their diagnosis and younger age was linked to higher anxiety and depression. No other signification relationships were observed.
Conclusions: Support services for CUP patients could be improved by addressing patients’ understanding of information provided to them by oncologists, particularly diagnostic information. It is recommended that all CUP patients receive adequate materials about their illness and available supports in an easy to understand format. Younger patients may need additional targeted support. Development of resources that help oncologists explain a CUP diagnosis as well as CUP-specific support services may be of value.