‘I still don’t know diddly’: a longitudinal qualitative study of patients’ knowledge and distress while undergoing evaluation of incidental pulmonary nodules

Hundreds of thousands of incidental pulmonary nodules are detected annually in the United States, and this number will increase with the implementation of lung cancer screening. The lengthy period for active pulmonary nodule surveillance, often several years, is unique among cancer regimens. The psychosocial impact of longitudinal incidental nodule follow-up, however, has not been described. We sought to evaluate the psychosocial impact of longitudinal follow-up of incidental nodule detection on patients. Veterans who participated in our previous study had yearly follow-up qualitative interviews coinciding with repeat chest imaging. We used conventional content analysis to explore their knowledge of nodules and the follow-up plan, and their distress. Seventeen and six veterans completed the year one and year two interviews, respectively. Over time, most patients continued to have inadequate knowledge of pulmonary nodules and the nodule follow-up plan. They desired and appreciated more information directly from their primary care provider, particularly about their lung cancer risk. Distress diminished over time for most patients, but it increased around the time of follow-up imaging for some, and a small number reported severe distress. In settings in which pulmonary nodules are commonly detected, including lung cancer screening programmes, resources to optimise patient-centred communication strategies that improve patients’ knowledge and reduce distress should be developed. Renewed efforts are needed to alleviate patient stress and keep them informed following the diagnosis of small growths on the lungs. The discovery of so-called ‘pulmonary nodules’ during routine chest screening can cause considerable distress to patients. The nodules, though often benign, require monitoring via follow-up scans, leading to a period of uncertainty which potentially affects patients’ well-being. In a longitudinal study involving interviews with 17 patients with newly diagnosed nodules, Donald Sullivan at Oregon Health and Science University, USA, and co-workers found that stress was often exacerbated by ineffective communication from medical staff. This led to patient misunderstandings about lung cancer risk, for example, which were compounded by the complex information in letters they received. Patients much preferred to speak to their primary care providers. The researchers call for improved staff training and education resources.