Unmet informational needs of patients with cancer: do clinicians know which patients are in need?

Although each patient has their own unique needs and preferences, healthcare practitioners may not know the type of support the patient needs. The aim of the present study was to assess the unmet informational needs in patients with cancer and to explore their association with clinicians' beliefs about information given to them about diagnosis, prognosis, and treatment.

In six Italian oncology departments, 980 consecutive patients were invited to participate in the study. Eight hundred three patients accepted to take part in the research. Patients were administered the Needs Evaluation Questionnaire, a sense of coherence scale, and a scale on psychological distress.

The final sample employed in the current study included 782 patients with approximately 40% showing significant distress and 54% of patients expressing the need for more information on their prognosis. Informational needs score was higher for patients admitted in ward, patients with higher distress, and patients with lower sense of coherence (p < 0.001). Patients with low levels of trust in conventional treatment expressed higher informational needs (p < 0.05). Clinicians' judgment of the levels of information received by the patients about diagnosis, prognosis, and treatment and their judgment of patients' awareness on those same dimensions were not associated with the informational needs expressed by the patients. Hierarchical regression showed a significant amount of additional explained variance in distress when informational needs expressed by patients were entered in the analysis.

Most patients with cancer reported greater need for information in Italy. The lack of association between informational needs explicitly expressed by the patient and the clinician's judgment of the patient's needs suggests that for clinicians it is difficult to accurately predict which patients are expressing greater or lesser needs. These results suggest that self-report assessment tools are necessary to assess the patient's information needs during the process of care.