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

Abstract

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.

Developing a Grounded Theory on Adaptation After Lung Transplantation From Intermediate-Term Patient Experiences

“…The findings are confirmed by Lundmark et al, where a majority of lung transplant recipients experienced several symptoms and restrictions 1 to 5 years posttransplant but still reported good well-being and general health. 10 Another study revealed that the majority of lung transplant recipients experienced considerable improvement in physical health and well-being, despite reporting physical complaints and restrictions in everyday life. 12 It was concluded that adjusting to posttransplant life required acceptance of ongoing illness and that health-care providers should act as mediators to facilitate the journey to relative normalcy.…”

“…The findings are confirmed by Lundmark et al, where a majority of lung transplant recipients experienced several symptoms and restrictions 1 to 5 years posttransplant but still reported good well-being and general health. 10 Another study revealed that the majority of lung transplant recipients experienced considerable improvement in physical health and well-…”

“…[6][7][8][9] A recent study of 117 lung recipients 1 to 5 years posttransplantation revealed that very few perceived themselves to be fully recovered without symptoms or restrictions in everyday life. 10 There was no relationship between perception of recovery, forced expiratory volume in 1 second, and bronchiolitis obliterans syndrome (BOS), a way to grade chronic rejection. Lung transplant recipients with BOS did not experience significantly less recovery than those without BOS.…”

“…The 3 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. 10 Lundmark et al, demonstrated that despite various setbacks and complications, a health transition occurs during the first year posttransplant. 1 To gain a longitudinal understanding of the transition process as well as recipients’ main concerns and how they deal with them up to 3 years posttransplant, the aim of the study was to further develop a grounded theory of health transition by exploring the process of change 1 to 3 years after lung transplantation.…”

Noteworthy Literature Published in 2018 for Thoracic Organ Transplantation

“…119 To this end, Singer et al 120 published preliminary validation of a LTx-specific HRQoL survey that assesses symptoms, health perceptions, functional status, and well-being. Separately, Lundmark et al 121 analyzed the impact of objective lung function on subjective outcomes. Interestingly, they found no correlation between lung function and self-reported recovery or well-being.…”