TO INFORM OR NOT TO INFORM about venous thromboembolisms – A qualitative study on communication between healthcare professionals and patients with lung cancer

Venous thromboembolism (VTE) is a leading cause of death among cancer patients. Despite this, studies show that patients with cancer feel inadequately informed about the VTE risk and symptoms, which may impede their ability to recognise symptoms and react promptly. Patients with lung cancer are especially vulnerable due to a high relative risk of developing VTE combined with a high prevalence of low health literacy. This study aimed to explore the VTE information needs of lung cancer patients and how patients and healthcare professionals (HCPs) communicate about VTE. Data was collected via semi-structured interviews with patients with lung cancer and HCPs. All participants (n = 20) were recruited from an oncological department. The analysis was performed in an inductive manner using a Ricoeur inspired strategy. Patients had varying information needs regarding VTE, but HCPs did not routinely communicate about VTE, as the topic tended to be lowly prioritised. HCPs communicated about VTE when patients expressed a need or presented symptoms of VTE. HCPs expressed concerns about adding to patient's emotional burden by informing about VTE, while some patients emphasised the importance of being mentally prepared for potential complications. The study demonstrates the challenging balance HCPs must maintain between adequately communicating about VTE and not causing undue psychological distress. However, given patient's often limited awareness of VTE, the responsibility to initiate communication about VTE must fall on the HCPs. •Lung cancer patients had diverse information needs regarding VTE.•Communication about VTE was lowly prioritised by healthcare professionals.•Healthcare professionals did not want to worry patients unnecessarily about VTE.•Lung cancer patients cannot be aware of VTE, if it is not communicated to them.•Healthcare professionals must be responsible for initiating communication about VTE.