gms | German Medical Science

Background and state of research: Lung transplant candidates are confronted with demanding disease and treatment trajectories during the waiting time for an organ. Despite this, palliative care services offering support with symptom management and distress are not routinely provided. To improve health care service provision, a better understanding of the complexity of lung transplant candidates’ situation is needed, linking subjective experiences with outcome measures.

Research questions and aim: To better understand the subjective experience of lung transplant candidates and to describe their symptom burden, health-related quality of life, health care utilization.

Methods: A convergent parallel Mixed Methods approach with a cross-sectional questionnaire study, including the Integrated Palliative Care Outcome Scale (IPOS), the Chronic Respiratory Questionnaire (CRQ-SAS), the Essen Coping Questionnaire (ECQ), EQ-5D-5L and Health Care Utilization (FIM-P) and an interview study on disease management, using qualitative content analysis with deductive and inductive coding. For the mixed methods analysis, qualitative clusters are translated into quantitative cluster variables and tested with multiple linear or binary logistic regression models controlling for age, sex, diagnosis, education, and LAS for their association with symptom burden, HRQL, and health care utilization.

Results: 85 patients took part in the questionnaire study, median age 55 years, n=47/85 female. 95% (n=79/85) with continuous oxygen therapy; 56%(n=48/85) obstructive lung disease (COPD, A1ATD), 14%(n=12/85) interstitial lung disease, 15% (n=13/85) cystic fibrosis. Median time on the waiting list was 271 days. Overall high symptom burden (IPOS total score m=23.77, SD 5.49), particularly chronic breathlessness (CRQ dyspnoea score median=2.40), poor EQ-5D-5L medium index value of .545 (SD .454) and high health care utilisation (median of 5 consultations in 8 weeks). 16 semi-structured interviews were analysed, showing differences in participants’ experiences on two conceptual dimensions (high vs. low): balance and engagement. Corresponding variables within the quantitative dataset were the CRQ-Mastery and two combined ECQ scales (‘acting, problem-oriented coping’, ‘active search for social integration’). Higher balance was associated with less symptom burden, better HRQL, and less usage of antidepressants. Higher engagement with less fatigue and lower depression scores. The cluster with low scores on both dimensions profiled with highest symptom burden, a low quality of life and feelings of resignation and helplessness.

Discussion and implications for further research: Results showed a high degree of diversity in the quantitative and qualitative data. The mixed methods analysis revealed a gradient of how well participants navigated through health care service provision and associations with physical and psychological well-being. Overall, it was possible to identify patients with particularly high burden that should be supported by palliative care.