PROPEL: Capturing the lived experience of lung cancer for patients and caregivers.

Abstract

e23255 Background: A limited understanding of the lived experience of a lung cancer diagnosis hinders the development of a resource framework that effectively supports people with the diagnosis (patients) and their support systems (caregivers). Addressing this knowledge gap is essential to identifying ways to enhance quality of life in both within the healthcare setting and in everyday life. Methods: PROPEL (Patient Reported Outcomes of People Experiencing Lung Cancer) is a real-world, non-interventional study designed examining the lived experience of patients and caregivers. Participants self-enrolled and completed tailored series of validated patient-reported outcome measures (PROMs) capturing the multidimensional impacts of a lung cancer diagnosis on health, wellbeing, and functioning. To assess health-related quality of life, patients completed the EORTC QLQ-C30 and selected PROMIS scales, while caregivers completed the Caregiver Roles and Responsibilities (CRRS) questionnaire. Results: 57 patients have enrolled; most were female (63%), aged 55-75 years (61%), reported Stage IV disease (70%), and were undergoing treatment (84%). 21% identified as a visible minority. The EORTC QLQ-C30 Global Health Scale (scale range 0-100) indicated moderate quality of life ( = 62.7; σ: 20.1), low symptom burden ( < 40), and moderate-high range functioning subscales. Role Functioning (daily activities) was highest ( = 81.5; σ: 23.7) and Emotional Functioning lowest ( = 67.0; σ: 24.4). PROMIS Psychological Impact of Illness Scales reinforced this finding, where compared to before their diagnosis, participants reported increased feelings of disconnection (30% vs 2%) and worry about the future (43% vs 12%), and decreased belief that their life had meaning (68% vs 82%). 52 caregivers have enrolled; most were female (86%) and provided care to a spouse/partner (52%). Most cared for someone with Stage IV disease (90%), with limited ability for self-care (49% ECOG ≥ 2), in active treatment (76%), and provided a median 20 hours/week of direct care. 58% of caregivers with employment were on leave. CCRS (scale range 0-152) indicated moderate levels of functioning among caregivers ( = 89.1; σ: 22.3), with largest deficits in functioning seen in Self-Care (scale range 0-24; = 12.9; σ: 5.2) and Emotional (scale range: 0-36; = 18.4; σ: 7.6) subscales. Common themes included taking on additional responsibilities (39%), not prioritizing self-care (78%), feeling a lack of recognition from cancer care teams (78%), that the future is on hold (44%), and overwhelmed (39%). All PROMs demonstrated strong internal consistency (Cronbach’s α > 0.75). Conclusions: PROPEL is the first Canadian study to collect comprehensive PROMs data on lung cancer, capturing the experiences of patients and caregivers and highlighting significant burdens. This builds a knowledge base to guide the development of support services for comprehensive wrap-around care.