Information is a fundamental component of cancer care. Knowing one’s diagnosis, understanding treatments, knowing which tests will be needed, and being able to discuss the future enable people to participate more fully in decisions about their health. Yet receiving information does not necessarily mean feeling sufficiently informed. And, crucially, can clinicians recognise which patients feel they need more information? This question lies at the heart of our study, “Unmet informational needs of patients with cancer: do clinicians know which patients are in need?”, published in Supportive Care in Cancer in 2026. The study examined informational needs reported directly by patients through the Needs Evaluation Questionnaire (NEQ) and compared them with clinicians’ assessments of the information provided and patients’ awareness of their clinical situation.
What Information Do Patients Feel They Need?
The study involved patients from six oncology centres in Tuscany, across different care settings. Of the 980 patients invited, 803 agreed to participate, and 782 were included in the NEQ analyses.
The findings revealed a substantial proportion of patients with unmet informational needs. Specifically:
- 54.1% wanted more information about their future condition;
- 43.7% wanted further explanations about treatment;
- 40.4% wanted better dialogue with clinicians;
- 38.7% wanted more information about tests;
- 37.5% wanted more information about their diagnosis;
- 35.5% wanted greater involvement in treatment decisions.
These findings highlight an important point: informational needs concern not only how much information is provided, but also how understandable it is, the opportunity for dialogue, and the person’s involvement in decisions.
The Central Finding: Clinicians’ and Patients’ Perspectives Do Not Necessarily Align
Perhaps the study’s most significant finding concerns the comparison between clinicians’ and patients’ perspectives.
Clinicians were asked to assess both the amount of information they had provided about diagnosis, prognosis, and treatment, and how aware they believed the patient was of these aspects. One might expect patients judged by their clinicians to be well informed or aware of their situation to report fewer informational needs. The findings did not support this association.
Clinicians’ assessments of patients’ level of information and awareness were not associated with the informational needs reported directly by patients. This does not mean that healthcare professionals are unable to communicate with patients. Rather, it highlights a fundamental distinction: Knowing what information has been provided is not the same as knowing whether that information meets the person’s perceived needs. Two patients who have received similar clinical information may have very different needs.
Why Is It Important to Ask Patients Directly?
This discrepancy underpins one of the study’s main messages. If clinical judgement alone cannot accurately identify patients with greater informational needs, it becomes important to ask patients directly what they feel they need.
The NEQ was developed precisely for this purpose: to capture the person’s own perspective rather than infer it solely from professional observation. As we note in the article, the questionnaire, originally developed by Marcello Tamburini and colleagues, was designed with potential routine use in clinical practice in mind. The questionnaire therefore does not replace dialogue between clinicians and patients. Instead, it can help initiate that dialogue, identifying topics on which patients would like more information or a more in-depth discussion.
Informational Needs and Psychological Distress
The study also confirms an important relationship between informational needs and psychological distress. Approximately 40% of participants had distress levels above the cut-off used in the study. Patients with higher distress also reported significantly greater informational needs. The statistical analysis further showed that patients’ self-reported informational needs explained additional variance in distress beyond that explained by the information clinicians reported having provided. Here, too, a causal interpretation should be avoided. Because the data were cross-sectional, we cannot establish whether unmet informational needs contribute to distress or whether people experiencing greater distress perceive a stronger need for information. Nevertheless, the finding demonstrates how closely information and the psychological experience of illness are connected.
The Role of Trust in Treatment
Another interesting finding concerns trust in conventional cancer treatments. Patients with lower levels of trust reported greater informational needs on seven of the NEQ’s nine informational items. This relationship was not observed for the more general questions about diagnosis and prognosis, but was evident for more specific aspects of treatment, tests, participation in decisions, and communication with healthcare professionals. One finding is particularly revealing: approximately 51% of patients with lower trust expressed a need for better dialogue with their doctor, compared with approximately 30% of those with higher trust. This suggests a close connection between information, dialogue, and a trusting relationship. Communication involves more than conveying accurate information. It requires a process in which people can understand, ask questions, discuss concerns, and participate in decisions about their care.
Informing Patients Means More Than “Providing Information”
Taken together, the findings suggest an important distinction between information provided and informational needs met. A healthcare professional may have accurately explained the diagnosis, prognosis, and treatment, yet this does not guarantee that the patient feels they have received all the information they need. Informational needs are, by their nature, personal. They may concern the future, tests, treatment effects, opportunities to participate in decisions, or simply the need for better dialogue with those providing care. Patient-centred communication therefore cannot be viewed as a straightforward transfer of information from professional to patient. It requires listening, checking understanding, and attending to individual preferences. Active listening and empathetic communication are particularly important throughout the care process.
From Clinical Judgement to the Patient’s Voice
The study’s main message can be expressed simply:
We cannot assume we know how informed someone feels without asking them directly.
This principle has important implications for the use of the NEQ. Informational needs should be assessed routinely and at different points along the cancer care pathway, allowing dialogue and information provision to be adjusted over time to each person’s needs. The questionnaire should therefore support the clinical relationship rather than become an alternative to it.
From this perspective, the key question is not only “Have we informed the patient?”, but also:
“Does the Patient Feel They Have Received the Information They Need?”
This represents a shift from information delivered to information the person feels they need. It is also an essential step towards care that is truly centred on the person.
Reference
Bonacchi A, Chiesi F, Tagliaferro C, Miccinesi G. Unmet informational needs of patients with cancer: do clinicians know which patients are in need? Supportive Care in Cancer. 2026;34:227. doi:10.1007/s00520-026-10442-2.
For further information: andreabonacchi@centrosynthesis.it
