The perspectives of survivors of Hodgkin lymphoma on lung cancer screening: A qualitative study

Abstract

Background: Hodgkin lymphoma survivors (HLS) are at excess risk of lung cancer as a consequence of HL treatment. HLS without a heavy smoking history are currently unable to access lung cancer screening (LCS) programmes aimed at ever smokers, and there is an unmet need to develop a targeted LCS programme. In this study we prospectively explored HLS perspectives on a future LCS programme, including motivating factors and potential barriers to participation, with the aim of identifying ways to optimise uptake in a future programme.Methods: Semistructured telephone interviews were conducted with HLS, aged 18-80 and lymphoma-free for ≥5 years, selected from a clinical database (ADAPT).Participants provided informed consent. Data were analysed using inductive thematic analysis.Results: Despite awareness of other late effects, most participants were unaware of their excess risk of lung cancer. Most were willing to participate in a future LCS programme, citing the potential curability of early-stage lung cancer and reassurance as motivating factors, whilst prior experience of healthcare was a facilitator. Whilst the screening test (a low dose CT scan) was considered acceptable, radiation risk was a concern for some and travel and time off work were potential barriers to participation.Conclusions: Our results suggest that most HLS would participate in a future LCS programme, motivated by perceived benefits. Their feedback identified a need to develop educational materials addressing lung cancer risk and concerns about screening, including radiation risk. Such materials could be provided upon an invitation to LCS. Uptake in a future programme may be further optimized by offering flexible screening appointments close to home.

Likely uptake of a future lung cancer screening programme in Hodgkin lymphoma survivors: a questionnaire study

“…In this questionnaire study, a large majority of long-term HL survivor respondents at risk of lung cancer indicated willingness to undergo lung cancer screening, were the test available. The motivations for lung cancer screening reported by participants in our previous qualitative study [18]-namely perceived benefits and desire for reassurance in a population exhibiting high levels of health anxiety-may explain the high levels of positive lung cancer screening intentions reported in this current study. Upon registration in the ADAPT programme-usually 5 years following completion of treatment-our standard departmental policy provides a written treatment summary to all patients, including information about an excess risk of lung cancer to HL patients treated with thoracic radiotherapy.…”

“…Our participants have prior experience of navigating the healthcare system-experience which is likely to be ongoing for many due to the late effects of treatment-of undergoing scans and dealing with the associated anxiety. This prior experience and the fact that health is a priority for this group [12,18] may explain the high levels of self-efficacy in our participants.…”

“…A larger proportion (52%) of our participants considered themselves to be at greater risk of lung cancer than the average person of the same age and sex. Knowledge of smoking as a lung cancer risk factor [40] and a perceptions by HL survivors of cancer treatments as being toxic [18] could have contributed to these comparative risk perceptions, particularly in participants who were not already aware that lung cancer can be a late effect of treatment. These findings demonstrate a lack of knowledge of personal lung cancer risk among HL survivors and reinforce the need for education about lung cancer risk upon invitation to a future lung cancer screening programme.…”

“…On the other hand, few male participants had been invited or participated in bowel cancer screening, potentially increasing hesitancy due to reduced levels of awareness around cancer screening and risk. Furthermore, our prior qualitative research found that women viewed breast cancer screening as a norm and their awareness of an excess risk of breast cancer aided their understanding of lung cancer risk [18], perspectives which could have increased their willingness to undergo lung cancer screening. The association between living in a less deprived area and screening hesitancy in this study contrasts with the literature showing that a lower socioeconomic status is associated with lower cancer screening uptake [19].…”

“…However, uptake of lung cancer screening by ever smokers has been suboptimal; the UK-based Lung Screen Uptake Study reported a 53% uptake rate, the highest reported rate among historically low uptake rates for lung cancer screening pilots and trials [15]. That said, uptake of cancer screening is higher among cancer survivors than non-cancer survivors [16,17] and in a qualitative study in the UK, HL survivors were motivated to participate in a future lung cancer screening programme and reported few barriers to participation [18]. However, it is likely that some of the sociodemographic and psychological barriers to cancer screening in the general public will also apply to HL survivors.…”