Aims: People living with lung cancer remain underrepresented in survivorship research. This study aimed to understand lung cancer survivors’ ongoing physical/psychological challenges, healthcare experiences including immunotherapy (IO) and targeted therapy (TT), and coping/adjustment strategies.
Methods: We recruited adults treated for lung cancer 3-24 months post-treatment through the Australian lung cancer clinical cohort study (Embedding Research and Evidence in Cancer Healthcare - EnRICH). Participants’ demographic, clinical, quality of life and distress data were obtained through the EnRICH database. Participants completed telephone interviews and data was analysed using Framework qualitative methods. The Appraisal and Coping theoretical framework was utilised to inform data interpretation.
Results: We conducted 20 interviews (10 females; average age 69 years) with participants across diagnostic stages (Stage I=2, Stage II=4, Stage III=8, and Stage IV=6). Two participants with early stage experienced subsequent disease progression. Most had received a novel therapy such as IO or TT (n=14) and were living with ≥2 other chronic conditions. Three themes were identified through qualitative analysis: 1) Living with Symptoms and Side Effects: Most participants reported functioning well despite ongoing physical effects. Those treated with newer therapies (IO/TT) reported common side effects, some that were serious or unexpected. 2) Hope and Struggle: Most participants expressed hope for the future whilst simultaneously preparing for disease progression and spoke of adjustment and coping strategies. Those receiving IO/TT experienced uncertainty given limited long-term survival information. 3) Interacting with the health system: Participants valued coordinated care from their cancer team, while those with multimorbidity described juggling lung cancer with other conditions.
Conclusions: Many people with lung cancer cope relatively well in survivorship. Survivors expressed hope about novel treatments, despite the complexity/uncertainty surrounding side effects and effectiveness. Findings may help guide development of supportive care resources/interventions focussed on uncertainty, fear of progression, IO/TT side effects, survivorship care, and multimorbidity.