LAUSR

A few years ago, I had a conversation with a paediatric oncologist who expressed concerns about her experience in the clinic regarding providing information to the patients. The clinicians would spend much time providing information, she said, but the patients or their parents would later claim that they had not received such information. This apparent gap between information perceived to be provided and information perceived to be received may contribute to patients’ unmet information needs commonly reported in cancer care [1–3]. Information is important across the disease trajectory in cancer care [4]. Being diagnosed with cancer, or having one you love diagnosed with cancer, turns your life up-side down. Prognosis can be uncertain and cancer treatments are often aggressive and longlasting, associated with a range of severe acute and late effects. Providing patients and their families with adequate information across the different stages of the cancer trajectory is essential to help them adjust to and cope with the cancer, to make informed decisions and participate in their health care [5–8]. An increasing number of patients survive their cancer disease due to improvements in cancer detection and treatment [10]. Surviving cancer does, however, come at a cost in terms of increased risks of serious health problems caused by the disease and/or its treatment, so called late effects (e.g. [11,12]). Survivors need knowledge of their risks of late effects to enable self-care, informed life-style choices, to seek timely health care and to communicate their special health risks to non-oncology health care providers [2,11] patients’, survivors’ and family members’ information need is therefore important to help close the gap of unmet information needs and to provide quality, patient-centred care. In the February issue of Patient Education and Counseling, Janine Vetsch and colleagues [13] presented a study of the information needs of long-term survivors of childhood cancers and their parents. This work represents a rare effort to combine quantitative and qualitative methods to assess and better understand selfreported information needs. They found that the majority of survivors and parents reported unmet information needs, with the most frequently reported needs concerning late effects, cancer recurrence, secondary cancer and follow-up care. Just over 20% of survivors and parents reported no need for information. Combining questionnaires with in-depth interviews with a sub-sample of survivors and parents allowed Vetsch et al. [13] to explore their quantitative findings in details. In that process, they uncovered ambivalence about receiving information, especially about future health risks such as late effects. We found a similar sense of