Managing the waiting time: Treatment burden and patient complexity among lung transplant candidates - A mixed methods...

Lung transplant (LTx) candidates face demanding disease and treatment trajectories but get little palliative care support. Thus, broader understanding of patients' situation is critical when aiming for improved (palliative) health care. The study describes LTx candidates' symptom burden, health-related quality of life (HRQoL), health care needs, and utilisation and explores their experiences and challenges in a convergent parallel Mixed Methods design with cross-sectional survey and semi-structured interviews. The interview study uses qualitative content analysis and a consecutive monothetic typology. For Mixed Methods analysis, typology clusters are converted into quantitative variables and tested for their association with symptom burden, HRQoL, and health care utilisation through multiple linear and binary logistic regression. 85 participants with chronic lung diseases (median age 55 years; 55% female). Median time on LTx waiting list 271 days. High symptom burden (IPOS mean = 23.9), especially chronic breathlessness (CRQ dyspnoea score median = 2.4), low EQ-5D-5L medium index value 0.545 and high health care utilisation (5 outpatient physician consultations in 8 weeks, 93% continuous oxygen). 40% had elevated HADS scores. In 16 interviews, two overarching cluster dimensions balance and engagement were identified. For the Mixed Methods analysis, dimensions were quantitatively reconstructed: CRQ-mastery for balance and two ECQ scales (APC & ASS) for engagement. Higher balance was associated with less symptom burden, better HRQoL, and less antidepressant usage, while higher engagement was associated with less fatigue and lower depression. Four distinct patient profiles were identified. Balanced, high engagement (best outcomes). Balanced, low engagement (moderate burden, adequate functioning). Imbalanced, high engagement (high burden despite active efforts). Imbalanced, low engagement (highest symptom burden, lowest HRQoL, helplessness, resignation). The typology allows early identification of patients with an imbalanced, low engagement profile who would benefit most from proactive palliative co-treatment.