Assessment of Quality of Life Among Patients After Lung Transplantation: A Single-Center Study.

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.

The Psychosocial Assessment of Transplant Candidates: Inter-Rater Reliability and Predictive Value of the Italian Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT).

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.

Preoperative expectations for health-related quality of life after lung transplant.

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.

Transplantation experience as a predictor for quality of life during the first 6 months after lung transplantation.

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_Lung (acceptance of the lung) and larger distances in the variable Prism_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.

An observational study of Donor Ex Vivo Lung Perfusion in UK lung transplantation: DEVELOP-UK.

BACKGROUND: Many patients awaiting lung transplantation die before a donor organ becomes available. Ex vivo lung perfusion (EVLP) allows initially unusable donor lungs to be assessed and reconditioned for clinical use. OBJECTIVE: The objective of the Donor Ex Vivo Lung Perfusion in UK lung transplantation study was to evaluate the clinical effectiveness and cost-effectiveness of EVLP in increasing UK lung transplant activity. DESIGN: A multicentre, unblinded, non-randomised, non-inferiority observational study to compare transplant outcomes between EVLP-assessed and standard donor lungs. SETTING: Multicentre study involving all five UK officially designated NHS adult lung transplant centres. PARTICIPANTS: Patients aged ≥ 18 years with advanced lung disease accepted onto the lung transplant waiting list. INTERVENTION: The study intervention was EVLP assessment of donor lungs before determining suitability for transplantation. MAIN OUTCOME MEASURES: The primary outcome measure was survival during the first 12 months following lung transplantation. Secondary outcome measures were patient-centred outcomes that are influenced by the effectiveness of lung transplantation and that contribute to the health-care costs. RESULTS: Lungs from 53 donors unsuitable for standard transplant were assessed with EVLP, of which 18 (34%) were subsequently transplanted. A total of 184 participants received standard donor lungs. Owing to the early closure of the study, a non-inferiority analysis was not conducted. The Kaplan-Meier estimate of survival at 12 months was 0.67 [95% confidence interval (CI) 0.40 to 0.83] for the EVLP arm and 0.80 (95% CI 0.74 to 0.85) for the standard arm. The hazard ratio for overall 12-month survival in the EVLP arm relative to the standard arm was 1.96 (95% CI 0.83 to 4.67). Patients in the EVLP arm required ventilation for a longer period and stayed longer in an intensive therapy unit (ITU) than patients in the standard arm, but duration of overall hospital stay was similar in both groups. There was a higher rate of very early grade 3 primary graft dysfunction (PGD) in the EVLP arm, but rates of PGD did not differ between groups after 72 hours. The requirement for extracorporeal membrane oxygenation (ECMO) support was higher in the EVLP arm (7/18, 38.8%) than in the standard arm (6/184, 3.2%). There were no major differences in rates of chest radiograph abnormalities, infection, lung function or rejection by 12 months. The cost of EVLP transplants is approximately £35,000 higher than the cost of standard transplants, as a result of the cost of the EVLP procedure, and the increased ECMO use and ITU stay. Predictors of cost were quality of life on joining the waiting list, type of transplant and number of lungs transplanted. An exploratory model comparing a NHS lung transplant service that includes EVLP and standard lung transplants with one including only standard lung transplants resulted in an incremental cost-effectiveness ratio of £73,000. Interviews showed that patients had a good understanding of the need for, and the processes of, EVLP. If EVLP can increase the number of usable donor lungs and reduce waiting, it is likely to be acceptable to those waiting for lung transplantation. Study limitations include small numbers in the EVLP arm, limiting analysis to descriptive statistics and the EVLP protocol change during the study. CONCLUSIONS: Overall, one-third of donor lungs subjected to EVLP were deemed suitable for transplant. Estimated survival over 12 months was lower than in the standard group, but the data were also consistent with no difference in survival between groups. Patients receiving these additional transplants experience a higher rate of early graft injury and need for unplanned ECMO support, at increased cost. The small number of participants in the EVLP arm because of early study termination limits the robustness of these conclusions. The reason for the increased PGD rates, high ECMO requirement and possible differences in lung injury between EVLP protocols needs evaluation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN44922411. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 85. See the NIHR Journals Library website for further project information.

The Psychosocial Assessment of Candidates for Transplantation: A Cohort Study of its Association With Survival Among Lung Transplant Recipients.

BACKGROUND: The United Network for Organ Sharing mandates a psychosocial assessment of transplant candidates before listing. A quantified measure for determining transplant candidacy is the Psychosocial Assessment of Candidates for Transplant (PACT) scale. This instrument's predictive value for survival has not been rigorously evaluated among lung transplantation recipients. METHODS: We reviewed medical records of all patients who underwent lung transplantation at Mayo Clinic, Rochester from 2000-2012. A transplant psychiatrist had assessed lung transplant candidates for psychosocial risk with the PACT scale. Recipients were divided into high- and low psychosocial risk cohorts using a PACT score cutoff of 2. The main outcome variable was posttransplant survival. Mortality was analyzed using the Kaplan-Meier estimator and Cox proportional hazard models. RESULTS: This study included 110 lung recipients: 57 (51.8%) were females, 101 (91.8%) Whites, mean age: 56.4 years. Further, 7 (6.4%) recipients received an initial PACT score <2 (poor or borderline candidates) and later achieved a higher score, allowing transplant listing; 103 (93.6%) received initial scores ≥2 (acceptable, good or great candidates). An initial PACT score < 2 was modestly associated with higher mortality (adjusted hazard ratio = 2.73, p = 0.04). CONCLUSIONS: Lung transplant recipients who initially received a low score on the PACT scale, reflecting poor or borderline psychosocial candidacy, experienced greater likelihood of mortality. This primary finding suggests that the psychosocial assessment, as measured by the PACT scale, may provide additional mortality risk stratification for lung transplant candidates.

Employment after lung transplantation--a single-center cross-sectional study.

BACKGROUND: 359 lung transplantations were performed in Germany in 2013. The main goals of lung transplantation are to prolong survival and improve the quality of life. Both of these goals can be reflected in a return to employment. We report the first study of employment after lung transplantation in Germany. METHODS: We evaluated the findings of a single-center, questionnaire-based cross-sectional investigation of the social and economic situation of 531 patients (September 2009 to March 2010) and obtained 5-year follow-up data in December 2014. RESULTS: 38% of the patients were employed after lung transplantation. They took a mean of ten sick days off from work each year; they did not have infections or organ rejection any more frequently than other patients. The fiveyear follow-up data showed no difference in the overall survival rate of employed and unemployed patients. Employment was associated with a better quality of life (80% [interquartiles: 70%, 95%]) versus 75% [interquartiles: 50%, 85%], p = 0.001). Factors associated with a return to employment included a higher educational level (odds ratio [OR] 2.6, 95%confidence interval [CI] 1.7-4, p = 0.001) and better physical fitness (OR 2, 95%CI 1.3-3.2, p = 0.001). CONCLUSION: The rate of return to work after lung transplantation in Germany is similar to the rates observed in other countries. The findings of this study imply that employment improves the quality of life and does not endanger health. Thus, patients who have received lung transplants should be advised to return to work if possible.

Impact of organ transplantation in heart, lung and liver recipients: assessment of positive life changes.

OBJECTIVE: The majority of psychological studies with organ transplant recipients have examined negative psychological effects. This study aimed to further investigate the positive effects of organ transplantation and to construct a specific measurement instrument. DESIGN: The initial pool of 14 items for the Positive Effects of Transplant Scale (PETS) was derived from organ recipient interviews. A cross-sectional postal study included 87 heart, 46 lung and 193 liver transplant recipients. The PETS was subjected to principal components analysis (PCA) using varimax rotation, and associations with other measures investigated. MAIN OUTCOME MEASURES: PETS and an open-ended item about positive effects. RESULTS: Coding of the open-ended item revealed that the majority of recipients attributed positive life changes to the transplant experience. PCA of the PETS indicated three factors that accounted for 58.82% of the variance. The 12-item questionnaire assesses improvements in: (1) life philosophy, (2) gratitude and (3) health. The total PETS scores exhibited adequate internal consistency and validity. DISCUSSION: Most transplant patients report positive psychological effects, which suggests this may be an understudied area. The initial development of an assessment tool provides researchers and clinicians a way to assess the degree and nature of these life changes.

Nature and correlates of post-traumatic stress symptomatology in lung transplant recipients.

BACKGROUND: The burden of post-traumatic stress disorder (PTSD) symptoms may be associated with worse outcomes after transplantation. Little is known about the prevalence and correlates of PTSD symptoms in lung transplant recipients. METHODS: We conducted a cross-sectional study of lung transplant recipients between April 2008 and February 2010 at a single center. The PTSD Checklist was used to determine the burden of PTSD symptomatology (total score) and percent of subjects with a provisional PTSD diagnosis (validated algorithms). We assessed the relationship between PTSD symptom burden and patient characteristics with multivariable logistic modeling. RESULTS: We enrolled 210 subjects (response rate 91%). Most patients were female (50%), and Caucasian (89%). The median age was 59 (interquartile range [IQR] 48 to 63) years and the median time between transplant and follow-up was 2.4 (IQR 0.7 to 5.3) years. Clinically significant PTSD symptomatology was observed in 12.6% (8.4% to 17.9%) of subjects. Subjects were more likely to endorse symptoms of re-experiencing (29.5%) and arousal (33.8%) than avoidant symptoms (18.4%). Multivariable linear regression showed higher PTSD symptom scores among recipients who were: younger (p < 0.001); without private insurance (p = 0.001); exposed to trauma (p < 0.001); or diagnosed with bronchiolitis obliterans syndrome (p = 0.005). CONCLUSIONS: Overall prevalence of PTSD (12.6%) in our study was two times higher than the general population. Patient characteristics found to be associated with an increased burden of PTSD symptoms may be useful to consider in future interventions designed to reduce this comorbidity.

Quality of recipient-caregiver relationship and psychological distress are correlates of self-care agency after lung transplantation.

Self-care behaviors are crucial for following the complex regimen after lung transplantation, yet little is known about recipients' levels of self-care agency (the capability and willingness to engage in self-care behaviors) and its correlates. We examined levels of self-care agency and recipient characteristics (socio-demographics, psychological distress, quality of relationship with primary lay caregiver, and health locus of control) in 111 recipients. Based on Perceived Self-Care Agency scores, recipients were assigned to either the low- or high-self-care agency comparison group. Characteristics were compared between groups to identify characteristics likely to be associated with lower-self-care agency. Mean (SD) score for self-care agency (scale range, 53-265) was 223.02 (22.46). Recipients with lowest-self-care agency scores reported significantly poorer quality of caregiver relationships (p < 0.001) and greater psychological distress (p < 0.001). After controlling for psychological distress, the quality of the recipient-caregiver relationship remained significantly associated with self-care agency. Every one-point decrease in the quality of caregiver relationship increased the risk of low-self-care agency by 12%. Recipients with poorer caregiver relationships and greater psychological distress may need additional support to perform the self-care behaviors expected after lung transplantation.

Patients' experiences of information and support during the first six months after heart or lung transplantation.

BACKGROUND: Heart or lung recipients are taught about a new lifestyle, risk factors, medication, food restrictions and exercise so they can take an active role and responsibility for disease management after transplantation. However, little is known about patients' experiences of information and support in these situations. OBJECTIVE: The aim of the study was to illuminate how patients, six months after a heart or lung transplantation, experienced the information and support they received in connection with the transplantation. METHODS: Sixteen patients were included in the study, and interviews were analysed using a qualitative content analysis method. RESULTS: The findings are presented in three themes: Alternating between gratitude and satisfaction and resignation, Striving to follow treatment strategies and Returning to a relatively normal life. The patients expressed gratitude when their health improved markedly but resignation when complications or side effects occurred due to the lack of information and support they received. CONCLUSIONS: Healthcare professionals can make specific improvements in the information they provide to patients to increase their preparedness. Information and support should be provided regularly so as to avoid non-adherence to essential guidelines. To return to a normal life, patients need support from healthcare organizations, families, employers and society in general. These findings should be taken into account in the clinical management of transplant patients, particularly those with dependent children or failing social networks.

Dyspnea and quality of life in patients referred for lung transplantation.

BACKGROUND: In the years 2007-2010 in the Department of Lung Diseases and Tuberculosis, Medical University of Silesia, 86 patients fulfilling ISHLT criteria qualified for lung transplantation. OBJECTIVES: The aim of the study was to assess the correlation between dyspnea and quality of life, and how it is related to clinical data in the examined group. MATERIAL AND METHODS: MRC, OCD, BDI and Borg scale were used for dyspnea evaluation, whereas quality of life was evaluated with SF-36 and SGRQ. A reference group consisted of 18 females and 68 males of the mean age 52 ±10 years and BMI 24 ±6. Thirty patients were diagnosed with IPF, 22 with COPD, and 34 with IIP. RESULTS: In the reference group, there was a significant correlation between dyspnea and quality of life: between MRC and Pf (SF-36 domain) r = -0.53; OCD and activity (SGRQ) r = 0.56; OCD and Pf r = -0.55; BDI and impact (SGRQ) r = 0.51; Borg scale and impact r = 0.47. In patients after lung transplantation, correlation between MRC and SF was r = -0.92; OCD and Pf, Bp, MH, PCS r = -0.97; OCD and RE r = -0.89; BDI and Pf r = -0.89; BDI and activity r=0.9; BDI and PCS r = -0.84. Depending on the diagnosis, the strongest correlation in IIP patients was found between OCD and activity (r = 0.62), in COPD patients - between BDI and impact (r = 0.79), and in IPF patients r = - 0.62 for OCD and Pf. Summing up the results, we can state that there is a significant correlation between dyspnea and quality of life. This correlation seems the strongest in patients after lung transplantation. CONCLUSIONS: The correlation found between the level of dyspnea and quality of life domains in lung transplant patients suggests that it would be worthwhile to add questions regarding dyspnea to assess the severity of the disease, clinical symptoms, and functional impairment during referring the patients for lung transplantation.

[Results of lung transplantation]. / Résultats de la transplantation pulmonaire.

INTRODUCTION: Lung transplantation has experienced an increasing expansion with a significant improvement in results with the passage of time. Evaluation of these results consists of several domains: survival, function, quality of life and cost-effectiveness. BACKGROUND: The success of lung transplantation is confirmed by a median survival that currently exceeds 5 years. Cystic fibrosis is the disease associated with the best results with, in France, a survival of 76% at 1 year, 56% at 5 years and 47% at 10 years and a median survival of 8 years. According to French data the 5-year survival is 46% for PAHT, 42% for COPD and 36% for pulmonary fibrosis. Studies have shown a survival benefit for cystic fibrosis and interstitial lung disease but definitive conclusions cannot be drawn for patients with COPD. Lung transplantation brings similar benefits in terms of quality of life and cost-effectiveness. VIEWPOINTS: New statistical methods would allow a better estimate in terms of years of survival and quality of life to be made for each candidate on an individual basis. CONCLUSIONS: Lung transplantation improves survival and quality of life compared to medical treatment, at an acceptable cost. These outcomes should be assessed at both an individual and social level to justify the resources involved.

The construct validity of the health utilities index mark 3 in assessing health status in lung transplantation.

PURPOSE: To assess the cross-sectional construct validity of the Health Utilities Index Mark 3 (HUI3) in lung transplantation. METHODS: Two hundred and thirteen patients (103 pre-transplant and 110 post-transplant) with mean age 53 years old (SD 13) were recruited during a randomized controlled clinical trial at the out-patient clinic in a tertiary institution. At baseline, patients self-completed measures that included the HUI3, EuroQol EQ-5D, Hospital Anxiety and Depression Scale (HADS) and socio-demographic questionnaire. Six-minute walk test scores and forced expiratory volume in 1 second data were collected from patient's medical records. A priori hypotheses were formulated by members of the transplant team about the expected degree of association between the measures. Correlation coefficients of < 0.1 were considered as negligible, 0.1 to < 0.3 as small, 0.3 to < 0.5 as medium, and ≥ 0.5 as large. RESULTS: Of the ninety predictions made, forty three were correct but in 31 the correlation was slightly lower than predicted and in 7 the correlations were much higher than predicted. In 48% of the cases, predicted and observed associations were in agreement. Predictions of associations were off by one category in 42% of the cases; in 10% of the cases the predictions were off by two categories. CONCLUSIONS: This is the first study providing evidence of cross-sectional construct validity of HUI3 in lung transplantation. Results indicate that the HUI3 was able to capture the burden of lung disease before transplantation and that post-transplant patients enjoyed higher health-related quality of life than pre-transplant patients.

Exploring the meaning of chronic rejection after lung transplantation and its impact on clinical management and caregiving.

Although the literature continues to portray chronic rejection after lung transplantation as ominous with no known treatment, no studies have examined family and clinician caregivers' perceptions of the diagnosis of chronic rejection and its impact on the course of clinical care. We explored the meaning and impact of chronic rejection from the perspective of family (n=10) and clinician (n=3) caregivers. We found that family caregivers considered the onset of chronic rejection to be inevitable, irreversible, unpredictable, and going back to pretransplant. Clinicians considered chronic rejection as a harbinger of deterioration and peril and expressed trepidation about informing recipients and their family caregivers about the diagnosis. Despite the heightened caregiving duties and challenges of treating chronic rejection, its unpredictable course and the prospect of retransplant instilled hope for stabilization or cure among most clinicians and caregivers, leading them to support recipients' wishes to pursue potentially futile treatments. Until recipients were no longer competent, caregivers believed all treatment options (including retransplant) had been exhausted, or suffering was prolonged, caregivers were reluctant to halt extraordinary treatment measures. Caregivers perceived that certainty regarding poor prognosis was required for palliative care and that palliative care was end-of-life care. Consequently, trials of aggressive treatment typically precluded palliative care.

Newsletters and adherence to a weekly home spirometry program after lung transplant.

CONTEXT: Newsletters are a common intervention for patients in clinical trials. However, it is not clear whether newsletters are associated with increased adherence to the health regimen, and if so, which aspects of the newsletter are reported as most helpful to patients. OBJECTIVE: To examine the association between patients' ratings of worthwhileness of a quarterly newsletter and adherence with a home spirometry regimen. DESIGN: Patients (n=48) were in a research-based spirometry program after lung transplant and had received at least 1 newsletter; 24 (50%) returned completed surveys via postal mail. MAIN OUTCOME MEASURES: Adherence for forced vital pulmonary function tests for respondents versus nonrespondents, number of weeks they were adherent, ratings they gave the newsletter, and which components of the newsletters were helpful to the respondents. RESULTS: Respondents had more forced vital capacity pulmonary function tests ("blows") overall, blew more times weekly, and blew more consistently from week to week than did nonrespondents. Although it was not statistically significant, a mild correlation was found between the number of weeks that the respondents were adherent and their ratings of the newsletter (r = 0.36, P = .08). Most respondents reported that newsletter length was "about right", and 86% reported that newsletters helped encourage regular spirometer use, maintain interest in the study, educate about general health, and alert readers to seasonal health risks. IMPLICATIONS FOR PRACTICE: High ratings for newsletters used to encourage participation among adults in our home spirometry study were associated with higher adherence.

Cross-sectional assessment of daily physical activity in chronic obstructive pulmonary disease lung transplant patients.

BACKGROUND: Information about daily physical activity of chronic obstructive pulmonary disease (COPD) lung transplant patients is relevant for evaluation of the functional recovery of physical capacity after lung transplantation. The objective of this study was to cross-sectionally assess daily physical activity, pulmonary function, physical fitness, fear of physical activity and motivation to exercise in COPD patients who were lung transplant candidates and lung transplant recipients. METHODS: Fifteen COPD lung transplant candidates (5 men and 10 women, mean age 53 years, forced expiratory volume in 1 second [FEV(1)] 20% predicted) and 47 recipients (18 men and 29 women, mean age 55 years, FEV(1) 93% predicted, 39 bilateral and 8 unilateral transplants) were enrolled in this observational study. Daily physical activity was measured using a pedometer (Digiwalker SW-200) and the Short QUestionnaire to ASsess Health-enhancing physical activity (SQUASH). Physical fitness was measured by the sit-to-stand test and the arm curl test. Fear of physical activity and motivation to exercise were measured by the Tampa Scale for Kinesiophobia-Dutch version Questionnaire and the Exercise Self-Regulation Questionnaire. RESULTS: Mean (+/-SD) number of steps per day in lung transplant recipients was higher compared with transplant candidates: 6,642 (+/-2,886) and 1,407 (+/-1,166), respectively (p < 0.05). Number of steps per day correlated significantly with FEV(1) (r = 0.32, p = 0.03) and lower body strength (r = 0.45, p = 0.002) in lung transplant recipients. There was no significant difference in daily physical activity, physical fitness, fear and motivation between bi- and unilateral transplant recipients. CONCLUSION: Our data suggest that lung transplantation improves daily physical activity, lower body strength and FEV(1).

Deciding about lung transplantation: informational needs of patients and support persons.

CONTEXT: Information is essential for informed decision making. To date, the informational needs of patients and support persons making the lung transplant decision are unexplored; in addition, the role of support persons in the transplant decision is unknown. OBJECTIVE: To identify the informational needs of patients and support persons attending a transplant clinic for consultation on lung transplantation, and to identify the involvement of support persons in the decision. DESIGN: A qualitative descriptive study and qualitative content analysis. SETTING: Participants were recruited from the Toronto General Hospital Lung Transplant Program. PARTICIPANTS: Twenty-two patients (8 candidates, 14 recipients) and 16 support persons. RESULTS: Most patients made the lung transplant decision in collaboration with their support person and reported receiving adequate information to make an informed decision. Diverse learning needs were identified among and between patients and support persons. Many participants identified the need for more information on practical issues, life after transplantation, and the experiences of transplant recipients. CONCLUSION: Most patients attending a transplant clinic for consultation on lung transplantation felt they made an informed decision; however, modifications to the content, timing, and ways of providing information could enhance the decision-making process for patients and support persons. Specifically, the transplant team can provide information on core lung transplant topics with access to supplementary information to meet specific needs and use materials that vary in source, formats, and time points during the decision-making period.

Quality of life and bronchiolitis obliterans syndrome in patients after lung transplantation.

BACKGROUND: Lung transplantation has become an established and effective treatment for patients with end-stage pulmonary disease. OBJECTIVE: To investigate health-related quality of life in correlation with occurrence and degree of bronchiolitis obliterans syndrome after transplantation. METHODS: In a cross-sectional study design, 119 consecutive lung transplant recipients (63.9% bilateral and 36.1% single lung transplants) responded voluntarily to a set of standardized questionnaires (12-Item Short-Form Health Survey, Center for Epidemiologic Studies-Depression Scale, Coping With Everyday Life, Beck Anxiety Inventory, Zerssen list of complaints) that covered health-related quality of life and psychological well being. Also, we performed pulmonary function studies to clinically grade bronchiolitis obliterans syndrome in all patients. RESULTS: In this cohort, 41.2% of patients developed bronchiolitis obliterans syndrome at a mean interval of 5.6 years after lung transplantation. Actuarial freedom from bronchiolitis obliterans syndrome was 90.1% +/- 2.3% at 1 year, 79.9% +/- 3.7% at 3 years, and 59.5% +/- 4.8% at 5 years after lung transplantation. Recipients with bronchiolitis obliterans syndrome reported significantly lower well being and quality of life than those without bronchiolitis obliterans syndrome, who scored similar to healthy volunteers. In a subanalysis, body functioning (P < .001) and related areas of coping (P < .001) were mostly affected by bronchiolitis obliterans syndrome. CONCLUSIONS: Quality of life was negatively affected by the onset of bronchiolitis obliterans syndrome. However, even patients who develop bronchiolitis obliterans syndrome reported a temporary benefit from lung transplantation. In addition to optimal medical care and efforts in preventing bronchiolitis obliterans syndrome, psychological support of lung recipients seems to be essential, especially when bronchiolitis obliterans syndrome occurs.

Living in limbo--patients with cystic fibrosis waiting for transplant.

Lung transplant for patients with end-stage cystic fibrosis (CF) in the UK is recognized as the only successful treatment for CF patients with advanced lung disease. This study uses an exploratory approach to examine how patients with CF and their carers cope with the rigours of chronic illness and life on a transplant waiting list. Eight patients with CF, four awaiting transplant and four who had been transplanted within the previous 3 years, along with five of their carers, were asked to recount their experiences using a semi-structured interview technique. Four themes emerged from the interview data; displacement, disorder, life in limbo and readjustment to wellness. Support appears to be particularly important to patients and families after false alarms occur, and upon return home after transplant. The small sample size precludes generalization of the results to all patients with CF but gives an in-depth insight into the lived experience of waiting for transplant.