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Objective: The objective of this review was to identify lung transplant recipients' experiences of and attitudes towards self-management., Introduction: Lung transplantation is an established treatment to improve the survival of patients with end-stage lung diseases and has been performed on more than 40,000 patients worldwide. The current focus of care for lung transplant recipients is long-term management. Patients need to adapt and adhere to complex self-management tasks to prevent complications and to enable them to keep the transplanted graft as long as possible. However, to date, there are no qualitative systematic reviews that identify lung transplant recipients' experiences of and attitudes towards self-management., Inclusion Criteria: This review included studies of adults over 18 years of age who had received a lung transplant and were able to perform their self-management tasks independently. All studies that investigated lung transplant recipients' experiences of and attitudes towards self-management in any setting were eligible for inclusion. All types of studies that focused on qualitative data, including, but not limited to, phenomenology, grounded theory, ethnography, action research, and feminist research, were considered for inclusion. Mixed methods studies were included only when qualitative data could be extracted separately, and if they reported results relating to the phenomenon of interest. Studies published in English or German were considered for inclusion in this review., Methods: The search strategy aimed to find published studies using the databases Web of Science Core Collection, PsycINFO (Ovid), MEDLINE (Ovid), Embase (Ovid), Emcare (Ovid), and CINAHL (EBSCOhost). The search for unpublished studies included ProQuest Dissertations and Theses Database, EThOS, and OpenGrey. Databases were searched from inception to March 2022. Methodological quality of studies was independently assessed by 2 independent reviewers using the JBI checklist for qualitative research. A standardized data extraction tool from JBI was used by 2 reviewers for data collection. Meta-aggregation was undertaken to synthesize the data, and the final synthesis of the findings was reached through discussion. Results were graded according to ConQual., Results: Ten studies with a sample size from 8 to 73 participants from North America and Central/Northern Europe were included in the review. The critical appraisal scores of the included studies ranged from 3 to 9 out of 10. A total of 137 findings were extracted and aggregated to form 19 categories and the following 4 aggregated syntheses: i) Changes in routines, beliefs, and sense of responsibility are essential for better adaptation and self-management after lung transplantation; ii) Life after transplantation is characterized by both positive and negative feelings and experiences; iii) Better adjustment and self-management after a lung transplant require dealing with one's own feelings and beliefs; iv) After transplantation, engaging with relatives, friends, medical team, and donors is essential to improve experiences and adapt to being a transplant recipient. Based on the ConQual scores, 2 synthesized findings were graded as moderate and 2 were graded as low., Conclusions: Nuanced emotional, social, relational, and psychological adjustment is required of lung transplant recipients to be able to successfully self-manage. Loved ones and health professionals contribute significantly to this process, but psychosocial or peer support may further facilitate this transition., Supplemental Digital Content: A German-language version of the abstract of this review is available as Supplemental Digital Content [ http://links.lww.com/SRX/A46 ]., Competing Interests: DE is an associate editor of JBI Evidence Synthesis, but was not involved in the editorial processing of this manuscript. The other authors declare no conflict of interest., (Copyright © 2024 JBI.)

Objective: Higher uncertainty is associated with poorer quality of life and may be impacted by clinician communication about the future. We determined how patients undergoing lung transplant evaluation experience uncertainty and communication about the future from clinicians., Methods: We performed a convergent parallel mixed-methods study using a cross-sectional survey and semistructured interviews. Patients undergoing lung transplant evaluation at the University of Colorado and the University of Washington answered questions about future communication and completed the Mishel Uncertainty in Illness Scale-Adult (MUIS-A; range 33-165, higher scores indicate more uncertainty). Interviews were analyzed using content analysis. Integration of survey and interview results occurred during data interpretation., Results: A total of 101 patients completed the survey (response rate: 47%). Twelve survey participants completed interviews. In the survey, most patients identified changing family roles as important (76%), which was infrequently discussed with clinicians (31%). Most patients (86%) worried about the quality of their life in the future, and 74% said that not knowing what to expect in the future prevented them from making plans. The mean MUIS-A score was 85.5 (standard deviation 15.3). Interviews revealed three themes: (1) uncertainty of the future distresses participants; (2) participants want practical information from clinicians; and (3) communication preferences vary among participants., Conclusion: Participants experienced distressing uncertainty and wanted information about the future. Communication topics that were important to participants were not always addressed by physicians. Clinicians should address how chronic lung disease and lung transplant can directly impact patients' lives and support patients to cope with uncertainty., (© 2024 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Rationale: Lung transplant (LTx) is a potentially lifesaving treatment option for individuals with advanced cystic fibrosis (CF), but more people with CF (PwCF) and advanced lung disease die each year than undergo transplant in the United States. Little is known about these individuals' LTx information needs and factors influencing their decision-making process related to transplant. Objectives: To examine PwCF's experiences with and preferences for provision of LTx information and to identify transplant information needs that CF clinicians are well positioned to address. Methods: We performed semistructured qualitative interviews in two separate cohorts: PwCF without LTx and PwCF with LTx between July 2019 and June 2020. Questions focused on awareness and knowledge about LTx, perspectives related to communication about transplant in the CF clinic, and experiences with LTx. Thematic analysis was used to organize the qualitative data. Exemplar quotes were chosen to llustrate domains that emerged pertaining to the research objectives. Results: Fifty-five PwCF, including 35 without LTx and 20 with LTx, participated. One-third of PwCF without LTx had normal or near-normal lung function. Key common domains among PwCF with and without LTx were identified, including information needs, connections with LTx recipients, and conversations with CF clinicians. For PwCF with and without transplant, concrete information needs were identified: success or survival, social support, surgery, recovery/pain, and quality of life post-transplant. The importance of connecting with LTx recipients to hear their stories and experiences was emphasized by both PwCF with and without transplant. Important considerations for timing and content of discussions with CF clinicians were identified, including having information presented early (before LTx referral is needed) and in limited detail at first. PwCF without LTx wanted to understand how LTx was relevant to them, with a focus on the unique experience of CF. PwCF with LTx emphasized the need for a centralized resource for LTx information. Conclusions: The findings provide content areas for CF clinicians to focus on as they proactively initiate conversations about LTx and support the development of tools to aid in discussions about LTx for PwCF.

To clarify and refine the specific elements of post-transplant recovery in lung transplant recipients, we explored the four dimensions of recovery: physiological, psychological, social, and habitual. This study is a scoping review. Two authors conducted a comprehensive electronic literature search to identify studies published from the establishment of the database to August 2022. Deductive coding was utilized to identify and categorize elements using a predefined list of the four components (physiological, psychological, social, and habitual recovery) based on the framework of post-transplant recovery proposed by Lundmark et al. Inductive coding was applied for concepts requiring further classification. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guideline. Systematic searching identified 8,616 potential records, of which 51 studies met the inclusion criteria. Ten subdimensions and their corresponding elements were identified and categorized into four dimensions of recovery following lung transplantation. The subdimensions included physiological recovery (including symptom experience, complications, physical function, and energy reserve), psychological recovery (encompassing affective distress, psychological adaptation, and transition from illness to health), social recovery (involving family adaptation and social adaptation), and habit recovery (focusing on health behavior)., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Health-related quality of life (HRQL) assessment plays a crucial role in the follow-up care of lung transplanted (LTx) patients. Previous reports have indicated that the HRQL achieved by these patients is often poorer compared to that of healthy individuals. However, the factors contributing to this lower HRQL remain unclear. This prospective study aimed to assess the effectiveness of using both a generic and a disease-specific HRQL instrument in evaluating the outcomes of patients who have undergone LTx., Methods: A total of 111 LTx patients were enrolled in the study, with 88 survivors completing the 5-year follow-up and 23 nonsurvivors identified within the first 3 y. Among the participants, 84 underwent double LTx, while 27 received a single LTx. Patients were interviewed before LTx, at 6 mo post-transplantation, and annually thereafter. Two validated instruments were utilized: the Euro quality of life five dimensions, a generic measure, and the St. George's Respiratory Questionnaire (SGRQ), a disease-specific questionnaire., Results: The study showed significant improvements in Euro Quality of Life five Dimensions scores from 6 mo after LTx. Specifically, the percentage of patients without Mobility problems increased from 23% before LTx to 71% at 5 y (P = <0.001), while the ability to self-care improved from 48% to 100% (P = <0.001). The ability to carry out usual activities improved from 13% to 86% (P = <0.001), and the proportion of patients without anxiety and depression increased from 50% to 86% (P > 0.004). However, there was no significant improvement observed in Pain, with only a slight reduction from 57% to 42.8% (P = 0.22). The SGRQ also showed improvements in all dimensions (symptoms, impact, activities) (P < 0.001). However, by the fifth year, the HRQL scores remained below normal reference values. Chronic graft dysfunction was associated with a decline in SGRQ scores. Bilateral LTx patients exhibited better SGRQ scores compared to unilateral LTx patients from the first year post-transplantation. Notably, there were no differences in scores between nonsurvivors and survivors., Conclusions: The study highlights the long-term improvement in HRQL among LTx patients, with greater improvements observed in physical dimensions compared to psychological dimensions. Bilateral LTx was associated with better SGRQ scores than unilateral LTx, and chronic graft dysfunction primarily affected SGRQ scores. These findings underscore the importance of utilizing both generic and specific HRQL instruments in assessing LTx outcomes., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Backgrounds: Improving quality of life (QOL) is one of the main aims of lung transplantation (LTx). There is a need to identify those who have poor quality of life early. However, research addressing inter individual quality of life variability among them is lacking. This study aims to identify group patterns in quality of life among lung transplant recipients and examine the predictors associated with quality of life subgroups., Methods: In total, 173 lung transplant recipients were recruited from one hospital in Guangdong Province between September 2022 and August 2023. They were assessed using the Lung Transplant Quality of Life scale (LT-QOL), Mindful Attention Awareness Scale (MAAS), Life Orientation Test-Revised scale (LOT-R), and Positive and Negative Affect Scale (PANAS). Latent profile analysis was used to identify QOL subtypes, and logistic regression analysis was used to examine the associations between latent profiles and sociodemographic and psychosocial characteristics., Results: Two distinct QOL profiles were identified: "low HRQOL" profile [ N  = 53 (30.94%)] and "high HRQOL" profile [ N  = 120 (69.06%)]. Single lung transplant recipients, and patients who reported post-transplant infection, high levels of negative emotion or low levels of mindfulness and optimism were significantly correlated with the low QOL subgroup., Conclusion: Using the domains of the LT-QOL scale, two profiles were identified among the lung transplant recipients. Our findings highlighted that targeted intervention should be developed based on the characteristics of each latent class, and timely attention must be paid to patients who have undergone single lung transplantation, have had a hospital readmission due to infection, exhibit low levels of optimism, low levels of mindfulness or high negative emotions., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Song, Luo, Liu, Zhou, Huang, Ju, Chen, Wong, Chen, Tan, Miao, Ma and Chen.)

Aim: The main aim of the present study is to examine the expectations and feelings of people awaiting lung transplantation., Background: The assessment of the benefits of lung transplant should consider, among other things, the subjective perceptions of patients about the procedure, especially in relation to the context and to their values, goals and expectations. This is an issue that has not been studied in depth, especially in Spain., Design: Exploratory qualitative study., Methods: Data were collected through semi-structured interviews during the period of being on the waiting list for transplantation. Thematic analysis of the data was supported by the Atlas.ti software., Results: The study population comprised 16 patients awaiting lung transplant, a number sufficient to reach data saturation. Four categories were identified to describe patients' feelings and expectations: (1) reasons for undergoing the transplant, (2) expectations about life post-transplant, (3) emotional state, and (4) relationship with the healthcare team., Conclusions: Patients have high expectations of lung transplantation. They see it as offering them a second chance at life, although the future creates uncertainty. The healthcare professionals are identified as key actors, providing essential support and information throughout the various stages of the process. Future research should explore recipients' experiences of lung transplant at later stages., Relevance to Clinical Practice: It is important to adapt care through all the lung transplant process, which is accompanied by intense and complex emotions since the beginning. Thus, providing social and psychological support from the beginning may contribute to their health status, helping them deal with all the emotions and feelings experienced, and find balance between expectations and reality., Patient or Public Contribution: Sixteen patients awaiting lung transplant were interviewed. Interview transcripts were returned to participants to check for accuracy with their experiences., (© 2023 The Authors. Nursing Open published by John Wiley & Sons Ltd.)

Background: Survival into the second decade after cardiothoracic transplantation (CTX) is no longer uncommon. Few data exist on any health-related quality of life (HRQOL) impairments survivors face, or whether they may even experience positive psychological outcomes indicative of "thriving" (e.g., personal growth). We provide such data in a long-term survivor cohort., Methods: Among 304 patients prospectively studied across the first 2 years post-CTX, we re-interviewed patients ≥15 years post-CTX. We (a) examined levels of HRQOL and positive psychological outcomes (posttraumatic growth related to CTX, purpose in life, life satisfaction) at follow-up, (b) evaluated change since transplant with mixed-effects models, and (c) identified psychosocial and clinical correlates of study outcomes with multivariable regression., Results: Of 77 survivors, 64 (83%) were assessed (35 heart, 29 lung recipients; 15-19 years post-CTX). Physical HRQOL was poorer than the general population norm and earlier post-transplant levels (P's < .001). Mental HRQOL exceeded the norm (P < .001), with little temporal change (P = .070). Mean positive psychological outcome scores exceeded scales' midpoints at follow-up. Life satisfaction, assessed longitudinally, declined over time (P < .001) but remained similar to the norm at follow-up. Recent hospitalization and dyspnea increased patients' likelihood of poor physical HRQOL at follow-up (P's ≤ .022). Lower sense of mastery and poorer caregiver support lessened patients' likelihood of positive psychological outcomes (P's ≤ .049). Medical comorbidities and type of CTX were not associated with study outcomes at follow-up., Conclusions: Despite physical HRQOL impairment, long-term CTX survivors otherwise showed favorable outcomes. Clinical attention to correlates of HRQOL and positive psychological outcomes may help maximize survivors' well-being., (© 2022 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Introduction: Lung transplant patients are immunocompromised because of the medication they receive to prevent rejection, and as a consequence are susceptible to (respiratory) infections. Adequate vaccination strategies, including COVID-19 vaccination, are therefore needed to minimize infection risks., Areas Covered: The international vaccination guidelines for lung transplant patients are reviewed, including the data on immunogenicity and effectivity of the vaccines. The impact on response to vaccination of the various categories of immunosuppressive drugs, used in the posttransplant period, on response to vaccination is described. A number of immunosuppressive and/or anti-inflammatory drugs also is used for controlling the immunopathology of severe COVID-19. Current available COVID-19 vaccines, both mRNA or adenovirus based are recommended for lung transplant patients., Expert Opinion: In order to improve survival and quality of life, infections of lung transplant patients should be prevented by vaccination. When possible, vaccination should start already during the pre-transplantation period when the patient is on the waiting list. Booster vaccinations should be given post-transplantation, but only when immunosuppression has been tapered. Vaccine design based on mRNA technology could allow the design of an array of vaccines against other respiratory viruses, offering a better protection for lung transplant patients.

Background: Health-related quality of life (HRQOL) has increasingly been accepted as a supplementary outcome measure for patients before and after lung transplantation (LT). This longitudinal study was conducted to recognize the tracks of HRQOL during the first year after transplantation and the main factors associated with HRQOL of LT recipients. The research was conducted in accordance with the 2000 Declaration of Helsinki and the Declaration of Istanbul 2008. The transplant organs were from volunteer donation, and next of kin provided written informed consents of their own free will. No prisoners were used, and donors were neither paid nor coerced., Methods: A total of 118 patients were investigated before and 3, 6, 9, and 12 months post-transplantation. The Medical Outcomes SF-36 (Chinese version) was used to measure the HRQOL. The recipients' demographic characteristics and clinical data were evaluated to determine the relative contributions to HRQOL outcomes., Results: Recipients reported a mean physical component summary of 39.62 ± 6.57, 57.90 ± 9.99, 59.15 ± 8.73, 58.79 ± 8.52, and 58.72 ± 8.99 before transplantation and at 3, 6, 9, and 12 months after LT (F = 64.960, P < .001). By 3 months after transplant, patients experienced significant improvement in physical component summary (MD = 18.27, SE = 1.52, P < .001); but between 3 and 12 months, no significant improvement was observed (MD = 0.82, SE = 1.77, P = .645). Patients reported a continuous rise with means of 44.63 ± 5.35, 51.13 ± 10.25, 51.92 ± 9.72, 53.23 ± 10.34, and 55.40 ± 8.83 for the mental component summary before LT and at 3, 6, 9, and 12 months after transplant (F = 13.059, P < .001). By 3 months after transplant, patients experienced significant improvement in mental component summary (MD = 6.50, SE = 1.50, P < .001). Between 3 and 12 months, a continuous significant improvement was observed (MD = 4.27, SE = 1.92, P = .030). The generalized estimated equation showed that age, marital status, residence, disease diagnosis, transplant type, sleep disorders, gastrointestinal complications, and BODE index (body mass index, obstruction, dyspnea, exercise) were all found to be related to HRQOL., Conclusion: The HRQOL of LT patients improved significantly at 3 months after transplantation, but between 3 and 12 months after transplantation, the changes were not obvious. Health practitioners should pay more attention to elderly patients, unmarried patients, patients living in urban areas, patients diagnosed with pneumoconiosis, patients with left single-lung transplantation, patients with sleep disorders, patients with high BODE indexes, and patients with gastrointestinal complications., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: Posttransplant depression has been linked to increased risk for adverse outcomes in lung transplant patients. Maintaining target serum immunosuppressant levels is also essential for optimal lung transplant clinical outcome and may be a crucial predictor of outcomes. Because depression could affect medication nonadherence, resulting in out-of-range immunosuppressant levels, we examined the relationship between posttransplant depression, immunosuppressant medication trough level variability, indexed by out-of-range values on clinical outcomes and coefficient of variability, and clinical outcomes., Method: A consecutive series of 236 lung transplant recipients completed the Center for Epidemiological Studies-Depression two-month posttransplant. Immunosuppressant trough levels (i.e., tacrolimus or cyclosporine) within the range of individualized immunosuppressant targets were obtained at three-, six-, nine-month follow-up clinic visits. Clinical outcomes including hospitalizations and mortality were obtained from medical records., Results: Fourteen percent of patients were classified as depressed (Center for Epidemiological Studies-Depression ≥16), 144 (61%) of patients had at least 25% out-of-range immunosuppressant values, and the average coefficient of variability was 36%. Over a median of 2.6 years (interquartile range = 1.2), 32 participants died (14%) and 144 (61%) had at least one unplanned, transplant-related hospitalization. Both depression (hazard ratio = 1.45 (1.19, 1.76), p < . 01) and immunosuppressant variation (immunosuppressant out-of-range: hazard ratio = 1.41 (1.10, 1.81), p < .01) independently predicted more frequent hospitalizations and higher mortality., Conclusions: Early posttransplant depression was associated with significantly worse clinical outcomes. While immunosuppressant level variability is also related to adverse outcomes, such variability does not account for increased risk observed with depression.

Competing Interests: Competing interests: None declared.

In addition to medical and psychological support, social support plays a key role in the success of lung transplant recipients, especially in children. An important component of that social support for pediatric lung transplant recipients is school reentry. These children face daily challenges, which often have to be addressed by the transplant team with little existing guidance in the medical literature. In this article, we discuss relevant practice issues for pediatric lung transplant recipients with cystic fibrosis including heightened concern for infection risk, bullying, school performance, and body image concerns. In addition to discussing these important issues, we provide recommendations based on our experiences.

Introduction: Lung transplantation (LTx) is the only effective method of treatment to improve the health and quality of life (QoL) of patients with end-stage lung diseases. After LTx, medical examination accompanied by quality of life assessment should be performed on routine follow-up visits. The aim of the study was to assess the QoL of patients after LTx., Material and Methods: The study group consisted of 60 patients (29 women and 31 men); 20 patients received single lung transplantation (SLT), and 40 received double lung transplantation (DLT). To determine the patient's QoL, the General Health Questionnaire (GHQ), the World Health Organization Quality of Life Test-BREF (WHOQOL-BREF), and the Saint George Respiratory Questionnaire (SGRQ) were used. Spirometry and the 6-minute walk test were analyzed to examine efficiency of transplanted organs., Results: In SGRQ there are differences between patients with cystic fibrosis and interstitial lung disease in symptom domain (20.28% vs 39.26%, P = .025) and total score (19.38% vs 32.47%, P = .028). As reported in the GHQ, men had worse overall results than women in sten scale (5.22 points vs 4.69 points). Patients after SLT achieved similar scores in every questionnaire., Conclusion: Studies assessing QoL should be an important addition to lung function tests and an integral part of control during postoperative follow-up visits. This study is one of the important contributions to understanding of how essential QoL is after LTx. The authors of this study realize that their work does not cover the whole issue, and further studies in this area are warranted., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: Living with severe lung disease like chronic obstructive pulmonary disease (COPD) is a very stressful situation. The way patients cope may impact their symptoms of anxiety and depression and physical function as well. We studied how ways of coping are associated with levels of emotional distress and lung function in patients with COPD being evaluated for lung transplantation., Methods: Sixty-five (mean age 57 years, 46% females) patients completed the General Health Questionnaire-30 (GHQ-30) assessing emotional distress and the Ways of Coping Questionnaire. Measurements of lung function and 6-minute walk test were included., Results: Seventeen (26%) patients had elevated emotional distress. Logistic regression of chronic GHQ score with gender, age, body mass index, lung function, and coping scales as covariates showed that escape avoidance and self-controlling coping and forced vital lung capacity were significantly associated with high emotional distress. Odds ratio of emotional distress increased with 5.2 per tertile ( P = .011) in escape avoidance coping score. Moreover, we revealed that emotionally distressed patients cope with their current situation by refusing to believe the current situation and taking their distress out on other people., Conclusion: Among patients with COPD, a high level of emotional distress was uniquely associated with escape-avoidance coping and lung function. Future work should ascertain whether coping style predicts distress or whether distress increases the use of escape-avoidance coping. Nevertheless, our findings indicate that if either element is present, health care professionals should be attentive to the need for interventions to improve patients' well-being.

Transplant recipients have significant psychosocial stressors due to unique posttransplant sequela that results in an increased incidence of psychopathology. Posttransplant psychological interventions, especially in lung transplant recipients, are understudied, as the focus of prior research has emphasized pretransplant interventions. However, posttransplant psychological stability affects medical outcomes. The importance of posttransplant psychological intervention is highlighted. Recommendations exist which call for attention to specific psychological domains in the posttransplant recovery period and highlight the impact of psychological rehabilitation on overall wellness and success in recovery. A novel psychological rehabilitation intervention is outlined as a response to posttransplant intervention recommendations to demonstrate implementation.

Posttraumatic stress disorder (PTSD) occurs at double the rate in individuals undergoing lung transplantation, compared to the normal population. The psychological sequela of PTSD makes recovery more challenging and may result in poor medical and psychological outcomes. A series of three cases illustrate this presentation. In all cases, PTSD history and symptomatology was undisclosed prior to lung transplantation, despite robust psychological evaluation. All patients experienced traumatic delirium during the acute recovery phase from transplantation. Re-emergence and exacerbation of PTSD symptoms related to remote trauma lasting up to 2 years after transplant. Noncompliance with post-transplant recovery occurred in the sample of cases presented. Major surgeries, such as lung transplant may exacerbate premorbid PTSD possibly via psychological sequela such as delirium, regardless of type or remoteness of trauma experiences. Existing psychological evaluation practices may not be adequate to capture PTSD as many patients may fail to disclose relevant history. Novel evaluation and treatment methods need to be developed.

Background: Quality of life and psychological responses to transplantation are constructs used to assess various psychosocial aspects after organ transplantation. The purpose of this study is to compare physical, psychological, social, and environmental quality of life between recipients of four organs: liver, lung, heart, and kidney., Methods: In order to compare the four types of quality of life and emotional responses post-transplant, HRQOL and TxEQ questionnaires were administered to 427 transplant recipients., Results: Heart and liver recipients report significantly higher health-related quality of life than lung and kidney recipients. Heart and lung patients report significantly fewer concerns and worries than liver and kidney patients. New additional variables were explored in our study: psychological connection to the living donor/deceased donor's family and commitment to them. We also found that heart recipients feel their personality traits changed, postoperative., Conclusions: The contribution of our study was the finding that ethno-religious and psychosocial variables have a positive effect on four dimensions of HRQOL. It may be useful to design psychological support interventions specifically adapted to patients after organ transplantation that aim at enhancing patients' HRQOL and alleviating negative emotional responses.

Background: Improving health-related quality of life (HRQL) is an important goal of lung transplantation, and St. George's Respiratory Questionnaire (SGRQ) is frequently used for assessing HRQL in patients waitlisted for lung transplantation. We hypothesized that chronic respiratory failure (CRF)-specific HRQL measures would be more suitable than the SGRQ, considering the underlying disease and its severity in these patients., Methods: We prospectively collected physiological and patient-reported data (HRQL, dyspnea, and psychological status) of 199 patients newly registered in the waiting list of lung transplantation. CRF-specific HRQL measures of the Maugeri Respiratory Failure Questionnaire (MRF) and Severe Respiratory Insufficiency Questionnaire (SRI) were assessed in addition to the SGRQ., Results: Compared to the MRF-26 and SRI, the score distribution of the SGRQ was skewed toward the worse ends of the scale. All domains of the MRF-26 and SRI were significantly correlated with the SGRQ. Multiple regression analyses to investigate factors predicting each HRQL score indicated that dyspnea and psychological status accounted for 12% to 28% of the variance more significantly than physiological measures did. The MRF-26 Total and SRI Summary significantly worsened from the baseline to 1 year ( p < 0.001 and p < 0.001 and p < 0.001 and., Conclusions: The MRF-26 and SRI are valid, discriminative, and responsive in patients waitlisted for lung transplantation. In terms of the score distribution and responsiveness, CRF-specific measures may function better in their HRQL assessment than the currently used measures do., Competing Interests: The authors declare that they have no conflicts of interest., (Copyright © 2020 Junko Tokuno et al.)

Background: The Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT) is a comprehensive instrument developed to accurately assess the main pretransplant psychosocial risk factors that may impact transplant outcomes., Objective: As neither established assessment procedures nor standardized tools designed to perform pretransplant psychosocial evaluation are currently available in Italy, the present study was designed to develop and preliminarily validate the Italian version of the SIPAT., Methods: First, our team developed the Italian version of the SIPAT, following standard forward-back translation procedures. Then, the Italian version of the SIPAT was retrospectively and blindly applied to 118 randomly selected transplant cases (40 heart, 40 lung, and 38 liver) by 2 independent examiners. Information about the patients' final transplant listing recommendation (i.e., listing vs. deferral) was independently collected from the respective transplant teams., Results: The inter-rater reliability of the Italian version of the SIPAT scores was substantial (Cohen's kappa = 0.77; P < 0.001). Moreover, the predictive value of the SIPAT ratings on the final transplant listing recommendation (i.e., listing vs. deferral) for each examiner was significant (both P < 0.05)., Conclusion: Current findings suggest that SIPAT is a promising and reliable instrument in its Italian version. Given these excellent psychometric characteristics, the use of the SIPAT as part of the pretransplant psychosocial evaluation in Italian medical settings is highly encouraged., (Copyright © 2019 Academy of Consultation-Liaison Psychiatry. Published by Elsevier Inc. All rights reserved.)

Background: We examined the association of adult lung transplant candidates' self-reported affect with transplant-related outcomes, evaluating whether a positive (vs negative) frame of mind might be protective., Method: Consenting waitlisted candidates from 6 centers completed the questionnaires including the Positive and Negative Affect Schedule annually and posttransplant. Univariate logistic regression analysis was performed to determine the association of baseline affect with outcomes of death or delisting. Models were subsequently adjusted for age, marital status, and education., Results: Questionnaires were completed by 169 candidates (77.9% participation). Mean positive affect, negative affect, and positive-to-negative affect ratio (positivity ratio) were similar to expected norms. The scores of the questionnaire did not change significantly over time. Fifteen (8.9%) waitlisted participants died. Candidates who died while waiting had lower positivity ratios compared to those who survived (1.82 vs 2.45; P = .02). A more negative affect was associated with increased death on the waiting list (adjusted odds ratio [OR] 1.10; P = .021). Conversely, a higher positivity ratio was associated with decreased death while waiting (adjusted OR: 0.45; P = .027)., Conclusion: Negative affect may represent a novel risk factor for death on the waitlist. Enhancing positive affect may represent a useful target for psychological optimization in lung transplant candidates.

Objective: To assess information needs of adults with Cystic Fibrosis and their families toward designing a patient decision aid about invasive mechanical ventilation (IMV) and lung transplant., Methods: Focus groups and in-depth interviews explored participants' knowledge, prior clinical conversations, and decisions about IMV and lung transplant. Interviews and focus groups were recorded and transcribed for analysis., Results: N = 24 participants were recruited. Themes identified were: prior communication with clinicians, decision-making process, and living with CF. Participants having prior conversations with CF clinicians regarding: lung transplant (N = 17/74%), and IMV (N = 3/13%). Most 15(65%) felt it was important to hear patients' real-life experience, others (3/13%) relied on their CF doctors for information. Most people (16/70%) believed hearing prognosis was helpful, but 5(22%) found this information frightening. High degrees of social isolation and a desire for more interaction with other CF adults were found., Conclusions: Qualitative methods helped identify areas important for decision making about IMV and LT for CF adults. Future directions include usability and feasibility testing of the decision aid., Practice Implications: Because IMV is rarely discussed with CF adults, clinicians might approach this topic, as with transplant, as lung function begins to decline. CF-care teams should also foster CF patient-level information exchange., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Lung transplantation is a therapeutic option for certain end-stage lung diseases. The phone call for lung transplantation is a major event in the life of these patients; as a result, it can generate significant stress. We herein present the case of a 58-year-old female patient with end-stage chronic obstructive pulmonary disease (COPD) who, while on the lung transplantation waiting list, received such a call. Complete transplant work-up, including cardiac tests undertaken shortly before, had revealed no contraindication to lung transplantation. She was admitted with severe acute respiratory failure, and her extensive work-up was compatible with pulmonary edema due to takotsubo cardiomyopathy. The lung transplantation was thus cancelled, owing to the patient's health condition and the poor quality of the graft as well. The patient stayed in the intensive care unit for several days, requiring noninvasive ventilation. The left ventricular function recovered completely within 10 days postdiagnosis, and the patient was discharged 13 days after her admission. The patient was transplanted 1 month thereafter, without any particular problems; she is currently, 8 months post-transplantation, in good condition. In the given case, the call for lung transplantation could have generated emotional stress severe enough to lead to takotsubo cardiomyopathy., (Copyright © 2019. Published by Elsevier Inc.)

With time running out, a nurse makes sure a family answers a crucial question.

Background: Previous research revealed that it is possible for lung recipients to experience health 1 year posttransplant, despite not being fully recovered. However, an in-depth, long-term perspective on how lung recipients' health transition evolves over time is lacking. Thus, the aim of this study was to further develop a grounded theory of health transition by exploring the process of change 1 to 3 years after lung transplantation., Methods: The grounded theory method was used prospectively to analyze the narratives of 14 adult lung recipients who were included at their 1-year follow-up and reinterviewed 2 years later., Results: This novel study contributes an in-depth understanding of the adaptation process after lung transplantation. The greatest concern in the 3 years after lung transplantation was adaptation to a new normality, which was achieved by 3 main strategies: compare, accept, and adjust. Adaptation to a new normality involved understanding that one's previous life no longer exists and that a new way of living requires adaptation. Successful adaptation resulted in the experience of health and well-being, whereas too many symptoms and limitations in everyday life led to difficulties and a profound sense of illness., Conclusions: Lung recipients can experience health, despite symptoms and complications by adapting to a new normality. This individual process begins posttransplant and continues throughout life.

Referral for lung transplantation is a complex process that typically begins with a discussion in cystic fibrosis (CF) clinic. We performed a secondary analysis of interviews conducted at the University of Washington CF Clinic as part of a study of unmet palliative care needs, June 2015 - January 2016, among adults with moderate-to-severe CF-related lung disease. Content analysis methods were used to identify themes related to discussion of lung transplant in CF clinic. Thirty-two of 48 interviews (67%) addressed transplant. An individual's willingness to discuss transplant was not necessarily related to the degree of lung function impairment. Patients reported reliance on CF physicians as a source of accurate information about transplant. Individuals with CF sometimes reported feeling too old or not worthy of transplant. Many had apprehensive or ambivalent feelings towards transplant. Patient-identified barriers and facilitators to lung transplant discussions can inform physicians as they discuss transplant in CF clinic., (Copyright © 2019. Published by Elsevier B.V.)

Objective: Provide recommendations to the cystic fibrosis (CF) community to facilitate timely referral for lung transplantation for individuals with CF., Methods: The CF Foundation organized a multidisciplinary committee to develop CF Lung Transplant Referral Consensus Guidelines. Three workgroups were formed: timing for transplant referral; modifiable barriers to transplant; and transition to transplant care. A focus group of lung transplant recipients with CF and spouses of CF recipients informed guideline development., Results: The committee formulated 21 recommendation statements based on literature review, committee member practices, focus group insights, and in response to public comment. Critical approaches to optimizing access to lung transplant include early discussion of this treatment option, assessment for modifiable barriers to transplant, and open communication between the CF and lung transplant centers., Conclusions: These guidelines will help CF providers counsel their patients and may reduce the number of individuals with CF who die without consideration for lung transplant., (Copyright © 2019 The Authors. Published by Elsevier B.V. All rights reserved.)

Rationale: Although lung transplantation aims to improve health-related quality of life (HRQL), existing instruments fail to include health domains considered important in this population., Objectives: We aimed to develop a comprehensive lung transplant-specific instrument to address this shortcoming., Methods: We developed a pool of 126 candidate items addressing domains previously identified as important by lung transplant recipients. Through cognitive interviews conducted in 43 transplant recipients, items deemed irrelevant or redundant were dropped. The 84 remaining items were field tested in lung transplant recipients. Exploratory and confirmatory factor analyses were used to evaluate the factor structure, and scales were evaluated for internal consistency and construct validity., Measurements and Main Results: The 84-item preliminary survey was administered to 201 lung transplant recipients with a mean age of 57.9 (±12.7) years; 46% were female. After factor analyses and internal consistency evaluation, we retained 60 items comprising the Lung Transplant Quality of Life (LT-QOL) Survey. The LT-QOL contains 10 scales that measure symptoms, health perceptions, functioning, and well-being. The confirmatory factor analysis model had good approximate fit (comparative fit index = 0.990; standardized root-mean-square residual = 0.062). Cronbach αs for the 10 scales ranged from 0.75 to 0.95. Interscale correlations were consistent with hypothesized relationships. Subjects with severe chronic lung allograft dysfunction (n = 13) reported significantly worse HRQL than subjects without chronic lung allograft dysfunction (n = 168) on 6 of the 10 LT-QOL scales., Conclusions: The LT-QOL is a new, multidimensional instrument that characterizes and quantifies HRQL in lung transplant recipients.

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., (© 2018 Nordic College of Caring Science.)

Background: Lung transplantation (LTx) provides a viable option for the survival of end-stage lung diseases. Besides survival as a clinical outcome measure, health-related quality of life (HRQoL) and psychological distress have become important outcomes in studies investigating the effectiveness of LTx in the short- and long-term., Objective: To assess and compare HRQoL trajectories of patients after LTx prior to and over a follow-up period of three years post-transplant, and to identify differences regarding distress, HRQoL and patient-related outcomes., Methods: In this longitudinal study, 27 lung transplant recipients were prospectively examined for psychological distress (Symptom Checklist short version-9; SCL-K-9), health-related quality of life (EuroQOL five dimensions questionnaire; EQ-5D), depression (HADS-Depression scale), and socio-demographic and medical outcomes at two weeks, three months, six months and three years following LTx. Additionally, potential outcome-related predictors for LTx-outcomes at three years post-transplant were assessed. Data were collected in accordance with guidelines set by the STROBE (strengthening the reporting of observational studies in epidemiology) statement., Results: Lung transplant recipients showed the most pronounced improvements in HRQoL and reduction in psychological distress between two weeks and three months post-transplant, with relative stable HRQoL and distress trajectories thereafter. The most important predictors of poor somatic health trajectories over time were the pre-transplant disease severity score and the pre-transplant HADS-Depression score. In addition, idiopathic pulmonary fibrosis (IPF) and pre-transplant extracorporeal membrane oxygenation (ECMO)-use predicted poorer survival, while cystic fibrosis was associated with better survival three years post-transplant., Conclusion: Lung transplantation yields significant survival and HRQoL benefits, with its peak improvement at three months post-transplant. The majority of patients can preserve these health changes in the long-term. Patients with a worse HRQoL and higher psychological distress at six months post-transplant tended to have a poorer survival post-transplant. Other risk factors for poorer survival included IPF, pre-transplant ECMO-use, pre-transplant symptoms of depression, high pre-transplant disease severity and worse somatic disease severity trajectories. The majority of LTx-recipients were unable to work due to illness-related reasons.

The prevalence of sleep-disordered breathing (SDB) after lung transplantation (LTX) is high. It is well-established that SDB is associated with decreased health-related quality of life (HRQoL), but the impact of SDB on exercise capacity is less clear. In this study we investigated HRQoL and exercise capacity in LTX recipients with or without SDB. In addition, we also investigated associations between sleep parameters and both HRQoL and exercise capacity. There were 53 stable LTX recipients (age > 18 years, 31 males, time from LTX 9-120 months) enrolled into the study. They all underwent polysomnography examination. HRQoL was assessed using the Short Form-36 (SF-36). Exercise capacity was measured using the 6-min walk test and cardiopulmonary exercise testing (CPET). We found inverse correlations between severity of SDB and both the predicted maximal workload (r = 0.24, p = 0.04) and maximal oxygen uptake (r = -0.26, p = 0.03) during CPET. Relative oxygen uptake positively correlated with sleep efficiency (r = 0.27, p = 0.03). SF-36 scores did not differ between patients with and without SDB, and were not significantly associated with SDB parameters. In conclusion, the presence of SDB is associated with a slight reduction in maximal exercise capacity in LTX recipients, and there is no appreciable relationship between SDB and HRQoL.

Lung transplantation is an established intervention for patients with advanced and life-threatening respiratory disease. Unfortunately, the shortage of organ donors results in a need for organs that greatly exceeds availability. This narrative review aimed to investigate the experiences of patients with respiratory diseases who wait for lung transplantation. Articles were retrieved from medical literature databases. Thirteen qualitative studies were reviewed, one of them used a mixed method. We found that individuals faced varied and complex situations differently while waiting for lung transplantations, depending on physical, psychological, social, and existential factors. Waiting gives hope for a future without the limitations imposed by the disease but also causes great stress. Many individuals struggled with the existential guilt associated with the privilege of having access to transplantation. This review highlighted that support from health-care professionals, next of kin, patients who had previously received a transplantation, and close friends have a vital role to play for individuals waiting for a lung transplantation., Competing Interests: The authors have disclosed no conflicts of interest., (Copyright © 2018 by Daedalus Enterprises.)

Introduction: Understanding medical information and self-management ability is vital for good quality of life among transplant recipients. However, health literacy (HL) has never been investigated among lung transplant recipients., Objective: This study investigated HL among Swedish lung transplant recipients 1 to 5 years after lung transplantation in relation to recovery, fatigue, adherence, cognitive function (CF), and relevant demographic variables., Method: This study was part of a cross-sectional, Swedish multicenter study 1 to 5 years post lung transplantation called Self-Management after Thoracic Transplantation. In total, 117 (57%) of 204 eligible lung recipients due for their yearly follow-up were included; 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) or 5 years (n = 11) after transplantation. The newest vital sign (NVS) instrument was used to measure the level of HL and contained 6 interview questions. The total scores ranged from 0 to 6 with 0 to 1= inadequate/low, 2 to 3 = marginal, 4 to 6 = adequate/good HL., Results: Twenty-one percent reported an NVS score of 0 to 3 indicating low or marginal HL and 79% scored 4 to 6 indicating adequate HL. Recipients scoring low or marginal were represented in all 5 years posttransplant, and the majority were not able to work. Health literacy was not related to age, sex, fatigue, adherence, recovery, marital status, or self-reported CF., Discussion: Health literacy was good among Swedish lung recipients. Providers should be aware that patients with low HL might present at any time posttransplant, and screening will help identify patients who need extra support.

Objective: Quality of life (QoL) is a crucial goal of post-transplant care. This study investigated predictors of QoL within the first 6 months after transplantation., Methods: Forty patients were assessed 2 weeks (T1), 3 months (T2), and 6 months post-transplant (T3). In the quantitative part, the EuroQol questionnaire (EQ-5D) and visualization methods (Prism) were applied. In the qualitative part, interviews were analyzed. Regression analyses were used to investigate the impact of the pictorial ratings at T1 on QoL at T2 and T3. The pictorial variables were related to the interviews for an in-depth analysis., Results: There was an increase in QoL between T1 and T2 that remained stable from T2 to T3. Smaller distances in the variable Prism&#95;Lung (acceptance of the lung) and larger distances in the variable Prism&#95;Transplantation (distance to the transplantation experience) were related to the increase in QoL between T1 and T2 and to an higher QoL at T2. High-QoL patients were able to create an equilibrium of defense and acceptance., Conclusion: Psychological processes early after transplant are of significance for the development of QoL within the 6 months following the surgery. These insights demonstrate that a mixed methodological approach provides a helpful understanding of post-transplant processing., (© 2018 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

How patients' health-related quality of life (HRQL) after lung transplant compares to their preoperative expectations is unclear. As part of a previously published prospective cohort study, we compared 328 subjects' expectations for their post-transplant HQRL with and without chronic lung allograft dysfunction (CLAD) to their actual HRQL scores after transplant, using the visual analog scale (VAS) and standard gamble (SG). Subjects' expectations were considered met when the absolute difference between the expected and actual scores (the "expectation error") was <0.1 units, based on the minimally important difference for VAS and SG. On average, subjects' post-transplant HRQL without CLAD met their expectations (mean expectation error: -0.09 units [VAS] and +0.02 units [SG]) and subjects' post-transplant HRQL with CLAD met or exceeded their expectations (mean expectation error: +0.08 units [VAS] and +0.19 units [SG]). When subjects developed CLAD stages 1 and 2, their HRQL was better than they expected (mean expectation error of each disease group: >+0.1 units). When subjects developed CLAD stage 3, their HRQL was as they expected (mean expectation error of each disease group except COPD and CF: within ± 0.1 units). Patients' expectations for their HRQL after transplant are at least met and may be exceeded., (© 2018 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

The psychosocial evaluation is well-recognized as an important component of the multifaceted assessment process to determine candidacy for heart transplantation, lung transplantation, and long-term mechanical circulatory support (MCS). However, there is no consensus-based set of recommendations for either the full range of psychosocial domains to be assessed during the evaluation, or the set of processes and procedures to be used to conduct the evaluation, report its findings, and monitor patients' receipt of and response to interventions for any problems identified. This document provides recommendations on both evaluation content and process. It represents a collaborative effort of the International Society for Heart and Lung Transplantation (ISHLT) and the Academy of Psychosomatic Medicine, American Society of Transplantation, International Consortium of Circulatory Assist Clinicians, and Society for Transplant Social Workers. The Nursing, Health Science and Allied Health Council of the ISHLT organized a Writing Committee composed of international experts representing the ISHLT and the collaborating societies. This Committee synthesized expert opinion and conducted a comprehensive literature review to support the psychosocial evaluation content and process recommendations that were developed. The recommendations are intended to dovetail with current ISHLT guidelines and consensus statements for the selection of candidates for cardiothoracic transplantation and MCS implantation. Moreover, the recommendations are designed to promote consistency across programs in the performance of the psychosocial evaluation by proposing a core set of content domains and processes that can be expanded as needed to meet programs' unique needs and goals., (Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.)

The psychosocial evaluation is well-recognized as an important component of the multifaceted assessment process to determine candidacy for heart transplantation, lung transplantation, and long-term mechanical circulatory support (MCS). However, there is no consensus-based set of recommendations for either the full range of psychosocial domains to be assessed during the evaluation, or the set of processes and procedures to be used to conduct the evaluation, report its findings, and monitor patients' receipt of and response to interventions for any problems identified. This document provides recommendations on both evaluation content and process. It represents a collaborative effort of the International Society for Heart and Lung Transplantation (ISHLT) and the Academy of Psychosomatic Medicine, American Society of Transplantation, International Consortium of Circulatory Assist Clinicians, and Society for Transplant Social Workers. The Nursing, Health Science and Allied Health Council of the ISHLT organized a Writing Committee composed of international experts representing the ISHLT and the collaborating societies. This Committee synthesized expert opinion and conducted a comprehensive literature review to support the psychosocial evaluation content and process recommendations that were developed. The recommendations are intended to dovetail with current ISHLT guidelines and consensus statements for the selection of candidates for cardiothoracic transplantation and MCS implantation. Moreover, the recommendations are designed to promote consistency across programs in the performance of the psychosocial evaluation by proposing a core set of content domains and processes that can be expanded as needed to meet programs' unique needs and goals., (Copyright © 2018 International Society for Heart and Lung Transplantation. Published by Elsevier Inc. All rights reserved.)

Background: Suicidality, a term referring to suicidal ideation and/or suicide attempts, has been understudied in lung transplant recipients, despite the well-documented period of high stress following transplantation. Understanding the full clinical picture of psychiatric morbidity before and after lung transplant is vital to supporting survival., Methods: Suicidality among lung transplant recipients was examined through case studies of 5 lung transplant recipients at Loyola University Medical Center in Chicago, IL. Medical records were reviewed for demographic and psychosocial variables during the pre- and post-transplant periods to identify common factors., Results: Patients presented with suicidal ideation within the first 2 years of receiving lung transplantation; 4 of 5 endorsed a plan and/or intent to act and 2 made suicide attempts. Pretransplant prescription medication mismanagement, pretransplant depression or anxiety, and post-transplant depression and anxiety were each present in at least 3 of 5 cases and appeared related to the development of suicidality. Social support issues were also prominent, including changes in available supports, interpersonal distress, and social isolation or lack of support., Conclusion: Patients presenting with psychiatric comorbidities or limited social support at any phase of the lung transplant process should be monitored closely. This case report draws into focus the need for systematic and ongoing psychological evaluation following lung transplantation., (© 2018 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Rationale and Aim: Little is known about persistent pain after lung transplantation. Therefore, the aim was to present a multidimensional assessment of self-reported pain 1-5 years after lung transplantation and its relationship with fatigue and transplant-specific well-being., Methods: This nationwide, cross-sectional cohort study is part of the self-management after thoracic transplantation study. A total of 117 lung recipients, all White, who were due for their annual follow-up at one (n = 35), two (n = 28), three (n = 23), four (n = 20) and 5 years (n = 11) after lung transplantation were included. We used three instruments; the Pain-O-Meter (POM), which provides information about pain intensity, sensation, location and duration, the MFI-19 fatigue instrument and the Organ Transplant Symptom and Well-being Instrument (OTSWI). Permission to carry out this study was granted by the Regional Ethical Review Board in southern Sweden (D-nr 2014-124)., Results: The prevalence of pain was 51% after 1 year, 68% after 2 years, 69.5% after 3 years, 75% after 4 years and 54.5% after 5 years. Women experienced more pain than men. Lung recipients with pain reported lower well-being and higher symptom distress but were not more fatigued than those without pain., Study Limitations: The limitations of this study are due to the cross-sectional design. The recruitment of patients during the study period was probably affected by the different conditions regarding staffing at the outpatient lung transplant clinic in the two thoracic transplant centres in Sweden. The slightly different approach to the care of these patients in the pre, peri and postoperative setting contributes to the heterogeneity of the study population., Conclusion: Chronic bodily pain up to 5 years after lung transplantation reduces perceived well-being. Lung recipients with pain report higher symptom distress than those without pain., (© 2017 Nordic College of Caring Science.)

Objectives: An evaluation of psychosocial functioning prior to lung transplantation is advisable for anticipating behavioral difficulties and for screening for any psychological distress that might be harmful to posttransplantation outcomes and adjustment., Methods: In this cross-sectional, single-center study, the level of psychosocial functioning of N = 75 patients before lung transplantation was rated using the Transplant Evaluation Rating Scale (TERS)., Results: he reliability of the TERS total score was satisfactory at α = 0.75. A two-factorial solution (emotional sensitivity; defiance) was found. Higher TERS scores were significantly associated with higher depressive and anxiety symptoms (r = .38/r = .42), lower quality of life (r = -.26), and fewer years abstinent from smoking (r = -.35). No associations were found with lung disease and symptom severity., Conclusions: The TERS appears to be a reliable and valid measure with clinical utility for specifying behavioral concerns prior to lung transplantation.

Objective: Depressive symptoms are common among lung transplant recipients and have been associated with worse clinical outcomes. However, few studies have examined the association between depressive symptoms assessed at multiple time points or behavioral mechanisms by which posttransplant depressive symptoms may confer greater clinical risk. We therefore examined the associations between depressive symptoms, exercise capacity, chronic lung allograft dysfunction (CLAD), and mortality prospectively in a large sample of lung transplant recipients., Methods: Between July 2009 and February 2016, 251 lung transplant recipients were assessed before transplantation and again approximately 3 weeks and 3 months after transplant. Depressive symptoms were assessed using the Centers for Epidemiologic Studies of Depression scale. Functional exercise capacity was assessed using the 6-minute walk test. Cox proportional hazards models were used to examine the associations between depressive symptoms, exercise capacity, CLAD, and mortality., Results: During a median (range) follow-up of 4.5 (0.1 to 6.3) years, 53 participants (21%) died. Greater depressive symptoms (hazard ratio [HR] = 1.39 [95% CI = 1.05 to 1.84], p = .021) and poorer exercise capacity (HR = 0.58 [95% CI = 0.38 to 0.90], p = .021) assessed 3 months after transplant were both independently associated with mortality. Although greater depressive symptoms were associated with lower exercise capacity (β = -0.14, p = .039), exercise capacity did not mediate the association between depressive symptoms and mortality. In secondary analyses, depressive symptoms were independently predictive of CLAD (HR = 1.29 [95% CI = 1.01 to 1.65], p = .045) and the composite outcome of CLAD and mortality in a clustered event model (HR = 1.30 [1.09 to 1.56], p = .005)., Conclusions: Depressive symptoms are associated with mortality and CLAD after lung transplantation, independent of exercise capacity.

Review Question: The question for this review is: what are lung transplant recipients' experiences of and attitudes towards self-management?

Background: Non-adherence to immunosuppressive treatment following solid organ transplantation is common and often associated with poorer outcomes. Non-adherence is difficult to assess, and barriers to adherence in lung transplant (LTx) recipients remain to be elucidated., Methods: A single-center cross-sectional observational study of all LTx recipients attending our department between 07/2013 and 05/2014 was performed. Non-adherence was assessed using patient self-reporting, including Basel Assessment of Adherence with Immunosuppressive Medication Scale (BAASIS) along with healthcare worker (HCW) judgment and reasons for non-adherence by the Immunosuppressive Therapy Barriers Scale., Results: A total of 138/504 patients (27.4%) self-reported non-adherence to immunosuppressive medication. HCW scored 96/504 patients (19.1%) as poorly adherent. Self-reported non-adherence increased with increasing interval after transplantation. The main reason for non-adherence was punctuality (75%), with only 11% reporting drug holidays. Explanations for non-adherence were primarily related to self-organization and difficulties incorporating medication into daily routine. There were no significant differences in medication knowledge or variation in trough levels., Conclusions: This study confirms that non-adherence in LTx recipients is frequent according to self-report. Barriers are self-organization and difficulties incorporating medication into daily routine. Social and behavioral support is needed to overcome non-adherence. (ClinicalTrials.gov number: NCT01889017)., (© 2018 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Context: A significant contribution to the success of lung transplantation is the recipient's ability to self-manage a multidrug regimen and follow complex instructions. Effective education has always been an integral component of the process of preparing patients to care for themselves post lung transplant. Impaired cognition, anxiety, and psychological distress, however, can decrease the retention of posttransplant care information provided during education sessions., Objective: This quality improvement project evaluated whether a multimedia education method compared to standard education method improves posttransplant care knowledge, anxiety, and satisfaction with the education experience in lung transplant patients and their caregivers., Methods: Two education methods groups, comprised of transplant patients and their primary caregivers, were compared: (1) historic control group who received the standard education (n = 19 dyads) and (2) multimedia group who received the new multimedia education (n = 18 dyads). Knowledge of posttransplant care was evaluated in both groups before and after receiving the education. A satisfaction survey was administered at the end of the education program., Results: A significantly higher percentage of patients receiving the multimedia method reported gains in posttransplant care knowledge ( P = .05), less anxiety about the transplant surgery ( P = .02), and satisfaction with the education method ( P = .02) when compared to those receiving the standard method. Caregivers and transplant team member also indicated that the multimedia method was more effective than the standard method., Conclusion: Multimedia methods decrease anxiety and increase satisfaction with the education experience when preparing patients for lung transplantation.

Lung transplantation (LT) increases the life expectancy of patients affected by end stage pulmonary disease; specifically, its ultimate aims are to improve survival and health related quality of life (HRQoL). The aim of the present longitudinal study was to determine the HRQoL trajectory and changes in functional capacity from time of entry in the waiting list for LT to 2 year after LT. The study included sixty-nine outpatients enrolled in a single medical center when they entered the waiting list for LT and who subsequently received it. They were then followed up over 2 years after LT. HRQoL was assessed by the physical and mental component summary (PCS and MCS) scores of the 36-item Short Form Health Survey (SF-36) and Saint George's Respiratory Questionnaire (SGRQ). Psychological distress was evaluated with the General Health Questionnaire (GHQ), and functional capacity was investigated using the six-minute walk test (6MWT) and forced expiratory volume (FEV1). Patients showed low SF-36 PCS (30.5±7.8) and SGRQ total (61.8±17.5) scores at entry in the waiting list, but exhibited significant changes over time after LT (p<0.001). Furthermore, patients who showed an increase of at least 50% in SF36 PCS and SGRQ scores at 6 months survived longer. Both FEV1 and 6MWT distance as well as GHQ scores significantly changed over time, with improvements occurring in the first 6 months after LT but no major changes thereafter. Out of the 69 patients enrolled, 32 died over a median follow-up of 51 months. Although mortality tended to be slightly higher for patients with lower HRQoL at the baseline assessment, this difference was not statistically significant. HRQoL evaluations appear critical in the follow-up of LT candidates, in particularly SGRQ, because of its specificity in targeting respiratory symptoms and functional wellbeing.

Aim and Objective: To describe patients' experiences throughout the first four months post-lung transplant., Background: Health professionals are familiar with the fact that patients' average survival after a lung transplant is about seven years and that 74% of these patients reject new organs within the first two years. By contrast, knowledge of these patients' perspectives after lung transplantation is scant., Design/method: A qualitative study was conducted between May 2013-May 2014 in which 26 interviewees participated - four months post-transplant - based on a semistructured interview guide. The data were inductively analysed using a content thematic approach within a phenomenological and hermeneutic frame., Results: The main findings in the study reveal that (1) having a lung transplant is an overwhelming experience, which for some patients includes (2) troubling physical and psychological challenges. The interviewees were happy to get another chance to live, although some of them suffered from medical side effects, postoperative complications and psychological problems. When asked about the future, interviewees stated that life could be described as (3) a balance of joy and challenges. They had received a new chance in life and were eager to fulfil their life hopes and dreams. At the same time, they were worried about the future. Having a lung transplant implies rules that have to be followed. What are the healthy choices they are supposed to make? And will there be a tomorrow?, Conclusions: Having a lung transplant is described as an overwhelming experience because of the improvement in the physical function of the body. Patients were grateful to family, friends and healthcare professionals for supporting them. The first four months post-transplantation were described as both physically and psychologically challenging. Interviewees were aware of the prognosis for patients following lung transplantation. They expressed feelings of worry and insecurity but still had hopes and dreams., Relevance to Clinical Practice: The patients are troubled by both physical and psychological challenges after lung transplantation. Several areas call for interventions from healthcare professionals during the early post-transplant period., (© 2017 John Wiley & Sons Ltd.)