Treatment information needs of individuals diagnosed with early stage non-small cell lung cancer and their support people

To address the aims related to patient needs, a purposive sample of 22 early-stage NSCLC patients and five support people participated in semi-structured interviews. Inductive thematic analysis was utilised to analyse the transcripts of semi-structured interviews undertaken with patients and support people. Five themes were identified in the patient study, including: treatment decision-making; treatment-related information needs; health literacy; professionalism of the doctor; and the function of support people. The majority of participants did not participate in treatment decision-making and were content with the proposed treatment plan presented to them by the treating doctor. However, most patients believed that, in principle, patient involvement in treatment decision-making was appropriate. In general, patients indicated that they were not interested in receiving much information regarding treatment and possible outcomes, with some stating that this was because they wanted to avoid information that they might find distressing. Patients unanimously expressed their preference to receive information from their treating clinician. Many patients verbalised that they found the information presented to them easy to understand, and some recognised that information they found in booklets or on the internet might not apply to their current situation. The majority of patients felt comfortable in seeking a second opinion; however, only one patient had done so. Patients’ perceptions of doctors’ expertise appeared to shape their views regarding the level of involvement preferred in decision-making and the amount of information needed. The patients generally regarded support people as performing a crucial role during pre-treatment consultations, primarily for assistance in questioning, recall of information, and general support. Results from interviews with support people identified four themes: information needs; understanding and evaluating information; the role of the support person; and decision-making. Identified were preferences in learning the potential outcomes of treatment and life expectancy and understanding what the treatment would entail. Most reported being able to understand the information covered in consultations with the treating doctor and also recognised that information available on the internet might not be relevant. Support people reflected on the part that they played in initial consultations and, similarly to the patients, identified that they asked questions during consultations. Support people also recognised that they presumed the role of advocate for the patient, performing duties such as ensuring that the patient understood the information presented and acting as a buffer between medical and administrative staff to reduce the burden on the patient. Support people described gathering information in an active manner, asking the treating clinician and their general practitioner questions, and searching on the internet. Unlike the patient group, support people identified why they sought information, and in most cases it was to assist in knowing what to expect.