Recovery, symptoms, and well‐being one to five years after lung transplantation – A multi‐centre study

BACKGROUND: In recent years, survival after lung transplantation has remained largely unchanged despite improvements in short-and intermediate-term survival, indicating the need to identify factors associated with recovery and long-term survival. Very little is known about how lung recipients recover after lung transplantation and whether such factors are related to symptom distress and well-being. This constitutes the rationale of the study. AIM: The aim was to explore symptom prevalence and distress as well as the degree of self-reported perceived recovery and well-being 1-5 years after adult lung transplantation. METHOD: This multicentre, cross-sectional nationwide study includes 117 lung recipients due for follow-up at 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) and 5 years (n = 11). Three different self-assessment instruments were utilised; The Postoperative Recovery Profile, the Organ Transplant Symptom and Well-Being Instrument, and the Psychological General Well-Being Instrument. Ethical approval of the study was obtained. RESULTS: Few (5.7%) lung recipients were recovered 1-5 years after lung transplantation and 27.6% were not recovered at all. No relationship was identified between present lung function and self-reported recovery or well-being. There was a strong relationship between recovery and well-being. It is possible to be partly recovered and experience good health. The most prevalent symptoms were tremor 66%, breathlessness 62%, and decreased libido 60%, while the symptoms perceived as most distressing were embarrassment about appearance, decreased libido, and poor appetite. LIMITATIONS: The cross-sectional design prevents identification of any causal relationships. Patient loss due to transplant mortality and inclusion difficulties resulted in a fairly small sample. CONCLUSION: Our findings suggest the need for changes in follow-up care such as systematic measurement of the degree of self-reported recovery and symptoms. This entails self-management support tailored to the recipients' symptom-management and health-management requirements.