Psychosocial aspects before and up to 2 years after heart or lung transplantation: Experience of patients and their next of kin.

BACKGROUND: Psychosocial factors are important for patients undergoing heart (HTx) or lung (LTx) transplantation and for their next of kin (NoK). AIM: To describe health-related quality of life (HRQoL; patients only), anxiety, depression, stress, coping ability, and burden (NoK only) for patients and their NoK before and up to 2 years after HTx or LTx. DESIGN: Adult patients (28 hearts and 26 lungs) and their appointed NoK were surveyed with questionnaires about specific psychosocial topics when they were accepted for the transplantation waiting list and 6 months, 1 year, and 2 years after transplantation. FINDINGS: Patients' coping ability and self-perceived health were low at baseline and improved over time after transplantation. However, lung patients took longer time to recover in terms of HRQoL, depression, and stress than heart patients. Similarly, NoK of lung patients experienced a higher burden and more stress 1 year after transplantation than NoK of heart patients. CONCLUSIONS: Healthcare professionals should be aware of the psychosocial challenges patients and their NoK face in daily living and provide support both before and after heart or lung transplantation.

Characteristics and survival of adult Swedish PAH and CTEPH patients 2000-2014.

OBJECTIVES: The Swedish Pulmonary Arterial Hypertension Register (SPAHR) is an open continuous register, including pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) patients from 2000 and onwards. We hereby launch the first data from SPAHR, defining baseline characteristics and survival of Swedish PAH and CTEPH patients. DESIGN: Incident PAH and CTEPH patients 2008-2014 from all seven Swedish PAH-centres were specifically reviewed. RESULTS: There were 457 PAH (median age: 67 years, 64% female) and 183 CTEPH (median age: 70 years, 50% female) patients, whereof 77 and 81%, respectively, were in functional class III-IV at diagnosis. Systemic hypertension, diabetes, ischaemic heart disease and atrial fibrillation were common comorbidities, particularly in those >65 years. One-, 3- and 5-year survival was 85%, 71% and 59% for PAH patients. Corresponding numbers for CTEPH patients with versus without pulmonary endarterectomy were 96%, 89% and 86% versus 91%, 75% and 69%, respectively. In 2014, the incidence of IPAH/HPAH, associated PAH and CTEPH was 5, 3 and 2 per million inhabitants and year, and the prevalence was 25, 24 and 19 per million inhabitants. CONCLUSION: The majority of the PAH and CTEPH patients were diagnosed at age >65 years, in functional class III-IV, and exhibiting several comorbidities. PAH survival in SPAHR was similar to other registers.

Support Experienced by Patients Living with Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension.

BACKGROUND: As pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are debilitating and fatal diseases it is essential to increase the understanding of patients' experience of support. The aim was to describe patients' experiences of support while living with PAH or CTEPH. METHODS: Seventeen patients (13 women and four men) aged 28-73 years were strategically selected from a regional PAH centre and individually interviewed. The answers were analysed using qualitative content analysis. RESULTS: Three categories that describe patients' experiences of support emerged: Support linked to the healthcare; support linked to the private sphere; and support linked to persons outside the private sphere. CONCLUSION: Healthcare practitioners must work more in collaboration to detect patients' need for support and to develop the patient's own skills to manage daily life. The PAH teams should tailor interventions to provide emotional, informational and instrumental support and guidance to patients and their families.

The International Heart Transplant Survival Algorithm (IHTSA): a new model to improve organ sharing and survival.

BACKGROUND: Heart transplantation is life saving for patients with end-stage heart disease. However, a number of factors influence how well recipients and donor organs tolerate this procedure. The main objective of this study was to develop and validate a flexible risk model for prediction of survival after heart transplantation using the largest transplant registry in the world. METHODS AND FINDINGS: We developed a flexible, non-linear artificial neural networks model (IHTSA) and classification and regression tree to comprehensively evaluate the impact of recipient-donor variables on survival over time. We analyzed 56,625 heart-transplanted adult patients, corresponding to 294,719 patient-years. We compared the discrimination power with three existing scoring models, donor risk index (DRI), risk-stratification score (RSS) and index for mortality prediction after cardiac transplantation (IMPACT). The accuracy of the model was excellent (C-index 0.600 [95% CI: 0.595-0.604]) with predicted versus actual 1-year, 5-year and 10-year survival rates of 83.7% versus 82.6%, 71.4%-70.8%, and 54.8%-54.3% in the derivation cohort; 83.7% versus 82.8%, 71.5%-71.1%, and 54.9%-53.8% in the internal validation cohort; and 84.5% versus 84.4%, 72.9%-75.6%, and 57.5%-57.5% in the external validation cohort. The IHTSA model showed superior or similar discrimination in all of the cohorts. The receiver operating characteristic area under the curve to predict one-year mortality was for the IHTSA: 0.650 (95% CI: 0.640-0.655), DRI 0.56 (95% CI: 0.56-0.57), RSS 0.61 (95% CI: 0.60-0.61), and IMPACT 0.61 (0.61-0.62), respectively. The decision-tree showed that recipients matched to a donor younger than 38 years had additional expected median survival time of 2.8 years. Furthermore, the number of suitable donors could be increased by up to 22%. CONCLUSIONS: We show that the IHTSA model can be used to predict both short-term and long-term mortality with high accuracy globally. The model also estimates the expected benefit to the individual patient.

Perceptions of received information, social support, and coping in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension.

Patients with a life-limiting diagnosis of pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) need disease-specific information, ability to cope, and functioning social networks. This cohort study investigated the experiences of PAH and CTEPH patients who received information about their diagnosis, treatment, and management, in addition to coping and social support. Sixty-eight adult patients (mean ± SD, age 67 ± 14; 66% women) were included. A total of 54% of the patients wanted more information. Patients received information mostly in areas concerning medical test procedures, the diagnosis, disease severity, possible disease causes, and how to manage their disease. Coping ability was significantly better in patients who were satisfied with the received information (P = 0.0045). The information given to PAH or CTEPH patients and their communication with healthcare professionals can be greatly improved. Gaps in information and misunderstandings can be avoided by working in cooperation with the patients, their relatives, and within the PAH team.

Information experiences and needs in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension.

Background. Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are fatal, noncurable, but treatable diseases that strongly affect the patients. Objective. To describe patients' experience of information relating to PAH or CTEPH. Methods. A qualitative method using content analysis was applied. Seventeen patients (thirteen women and four men) aged 28-73 years from a regional PAH centre were individually interviewed. Results. Three categories that describe patients' experiences of information emerged: handling of information, struggling with feelings that also affect others, and vulnerability associated with uncertainty. The patients would have welcomed more information to relatives from the healthcare professionals. Shortcomings on communicating a prognosis were experienced. The mediated information and knowledge gave the patients insight into physical or psychosocial problems. Mutual exchange of information between patients and healthcare professionals were marred by different experiences of attitudes, behaviour, and ownership. Conclusions. In the future, healthcare organizations must struggle to achieve a holistic healthcare by making it more person-centred, and they must also promote cooperation between PAH centres and local healthcare providers. It is essential to determine the most appropriate and valuable path of information and communication and, thereby, the most cost-effective management of PAH or CTEPH.

Relative's experiences before and after a heart or lung transplantation.

BACKGROUND: Relatives take on great responsibilities during patients' heart or lung transplant process and an understanding for their situation is required. OBJECTIVE: To describe relative's experiences before and during the patient's hospital stay as well as during the first 6 months after a heart or lung transplantation. METHODS: Using qualitative content analysis, 15 relatives (eight women and seven men) aged 36-65 years were interviewed within 6 months of a heart or lung transplantation. RESULT: Three categories that illuminate relatives' experiences have been identified: "Navigate specific circumstances," "Facilitate throughout the transplantation journey" and "Experiences of strength and weakness of information and support." The relatives reported involvement in the transplantation decision, peer support, information seeking, burden and coping. CONCLUSION: Greater awareness about relatives' experiences with identification of appropriate support and information exchange between health care professionals and relatives is important. This awareness could provide benefits for heart or lung transplant patients, families and health care organizations.

Waiting for a heart or lung transplant: Relatives' experience of information and support.

OBJECTIVES: To describe the relatives' experiences of information and support while heart or lung transplant candidates were waiting for a transplantation. METHODOLOGY/DESIGN: The critical incident technique was used. Incidents were collected via interviews with 18 relatives (28-73 years old) of heart or lung transplant patients within four weeks of the patients being accepted onto the transplant waiting list. FINDINGS: A total of 286 important events, both positive and negative, were identified and divided into two main areas: "Experiencing information and support" and "Reflecting upon information and support." "Experiencing information and support" was associated with "dissatisfaction with the health-care system", "being relatively satisfied", "supporting patients" and "the role of social networks." "Reflecting upon information and support" was associated with "finding strength" and "uncomfortable with emotions". Relatives experiences suggest that needs can be met through specific targeted information and support for them as well as mediating contact to previously transplanted persons. CONCLUSION: The findings indicate a gap between the information and support that relatives need and receive, and that more attention should be paid to information and support for this group. By increasing awareness among healthcare professionals and the community, interventions can be developed that benefit relatives.

Heart or lung transplanted patients' retrospective views on information and support while waiting for transplantation.

AIMS AND OBJECTIVES: To describe the patients' retrospective experiences of the information and support they received while on the heart or lung transplant waiting list. BACKGROUND: Patients differ in the way that they cope with the time spent waiting for a heart or lung transplant. Patients must already before the transplantation be 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. Little is known about patients' experiences of information and support in these situations. DESIGN: Qualitative descriptive design. METHODS: Sixteen patients (16-67 year) were strategically selected from one transplant centre in Sweden and interviewed six months after heart or lung transplantation. Using content analysis, transcribed data were organised into subcategories that reflected emerging categories. RESULTS: Three categories that describe patients' experiences of information and support have been identified: 'Achieving confidence and trust by information and support', 'Experiencing a lack of input and understanding' and 'Struggling with a life-threatening illness and an insecure future'. Each category consists of different subcategories. CONCLUSIONS: Information and support in connection to heart or lung transplantation are a complex and multifaceted issue involving patient-related, family-related, disease-related and treatment-related factors as well as experiences related to the social situation, the healthcare system and society. Transplant patients are very vulnerable, and a deeper understanding of patients' experiences should help healthcare providers in optimising the care for these very sick patients. RELEVANCE TO CLINICAL PRACTICE: A holistic approach to the patient is necessary in meeting the needs of patients with chronic illness, especially patients with children at home, as well as the needs of their families. An important implication is the necessity to enhance awareness about transplant patients in society in general, in particular in other institutions, by sharing knowledge and by improving cooperation.

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.

Long-term follow-up of lung and heart transplant recipients with pre-transplant malignancies.

BACKGROUND: Concern regarding recurrence of pre-transplant (Tx) malignancy has disqualified patients from Tx. Because this has been poorly studied in lung and heart Tx recipients our aim was to investigate the influence of pre-Tx malignancy on post-Tx recurrence and long-term survival, focusing on pre-operative cancer-free intervals. METHODS: From our lung and heart Tx programs (1983 to 2011) we retrospectively identified 111 (lung, 37; heart, 74) of 3,830 recipients with 113 pre-Tx malignancies. The patients were divided into 3 groups by pre-Tx cancer-free interval: Group I, <12 months (n = 24); Group II, ≥12 to<60 months (n = 18); and Group III, ≥60 months (n = 71). RESULTS: Mean age at pre-Tx malignancy was 35±18 years. Mean post-Tx follow-up time was 70±63 months (range, 0-278 months), and malignancy recurrence was 63% in Group I, 26% in Group II, and 6% in Group III. Kaplan-Meier analysis of freedom from post-Tx recurrence revealed the following differences among the groups: Group I vs II, p = 0.08; II vs III, p = 0.002; and I vs III, p<0.001. Overall survival (51 deaths) was significantly poorer in Group I than in Groups II and III (p = 0.044). Survival between Groups II and III did not differ significantly (p = 0.93). CONCLUSIONS: Cancer-free survival of ≥5 years pre-Tx is associated with the lowest recurrence. However, recurrence is related to the time the patients were cancer-free, as seen in Groups I and II.

Cardiac output and cardiac index measured with cardiovascular magnetic resonance in healthy subjects, elite athletes and patients with congestive heart failure.

BACKGROUND: Cardiovascular Magnetic Resonance (CMR) enables non-invasive quantification of cardiac output (CO) and thereby cardiac index (CI, CO indexed to body surface area). The aim of this study was to establish if CI decreases with age and compare the values to CI for athletes and for patients with congestive heart failure (CHF). METHODS: CI was measured in 144 healthy volunteers (39 ± 16 years, range 21-81 years, 68 females), in 60 athletes (29 ± 6 years, 30 females) and in 157 CHF patients with ejection fraction (EF) below 40% (60 ± 13 years, 33 females). CI was calculated using aortic flow by velocity-encoded CMR and is presented as mean ± SD. Flow was validated in vitro using a flow phantom and in 25 subjects with aorta and pulmonary flow measurements. RESULTS: There was a slight decrease of CI with age in healthy subjects (8 ml/min/m² per year, r² = 0.07, p = 0.001). CI in males (3.2 ± 0.5 l/min/m²) and females (3.1 ± 0.4 l/min/m²) did not differ (p = 0.64). The mean ± SD of CI in healthy subjects in the age range of 20-29 was 3.3 ± 0.4 l/min/m², in 30-39 years 3.3 ± 0.5 l/min/m², in 40-49 years 3.1 ± 0.5 l/min/m², 50-59 years 3.0 ± 0.4 l/min/m² and >60 years 3.0 ± 0.4 l/min/m². There was no difference in CI between athletes and age-controlled healthy subjects but HR was lower and indexed SV higher in athletes. CI in CHF patients (2.3 ± 0.6 l/min/m²) was lower compared to the healthy population (p < 0.001). There was a weak correlation between CI and EF in CHF patients (r² = 0.07, p < 0.001) but CI did not differ between patients with NYHA-classes I-II compared to III-IV (n = 97, p = 0.16) or patients with or without hospitalization in the previous year (n = 100, p = 0.72). In vitro phantom validation showed low bias (-0.8 ± 19.8 ml/s) and in vivo validation in 25 subjects also showed low bias (0.26 ± 0.61 l/min, QP/QS 1.04 ± 0.09) between pulmonary and aortic flow. CONCLUSIONS: CI decreases in healthy subjects with age but does not differ between males and females. We found no difference in CI between athletes and healthy subjects at rest but CI was lower in patients with congestive heart failure. The presented values can be used as reference values for flow velocity mapping CMR.

Improvement in renal function after everolimus introduction and calcineurin inhibitor reduction in maintenance thoracic transplant recipients: the significance of baseline glomerular filtration rate.

BACKGROUND: The NOCTET (NOrdic Certican Trial in HEart and lung Transplantation) trial demonstrated that everolimus improves renal function in maintenance thoracic transplant (TTx) recipients. Nevertheless, introduction of everolimus is not recommended for patients with advanced renal failure. We evaluated NOCTET data to assess everolimus introduction amongst TTx recipients with advanced renal failure. METHODS: This 12-month multicenter Scandinavian study randomized 282 maintenance TTx recipients to everolimus introduction with calcineurin inhibitor (CNI) reduction or standard CNI therapy. The measured glomerular filtration rate (mGFR) was noted at baseline and after 1-year using Cr-ethylenediaminetetraacetic acid clearance. RESULTS: In 21 patients with a baseline mGFR of 20 to 29 ml/min/1.73 m(2), renal function improved in the everolimus group compared with the control group ((ΔmGFR 6.7 ± 9.0 vs -1.6 ± 5.1 ml/min/1.73 m(2); p = 0.03). Amongst 173 patients with moderate renal impairment (mGFR 30-59 ml/min/1.73 m(2)), renal function improvement was also greater amongst everolimus patients than in controls (ΔmGFR 5.1 ± 11.1 vs -0.5 ± 8.7 ml/min/1.73 m(2); p < 0.01). In 55 patients with mGFR 60 to 89 ml/min/1.73 m(2), mGFR did not change significantly in either group. Improvement in mGFR was limited to patients with a median time since TTx of less than 4.6 years and was also influenced by CNI reduction during the study period. CONCLUSIONS: Everolimus introduction and reduced CNI significantly improved renal function amongst maintenance TTx patients with pre-existing advanced renal failure. This beneficial effect was limited to patients undergoing conversion in less than 5 years after TTx, indicating a window of opportunity that is appropriate for pharmacologic intervention with everolimus.

Recently accepted for the waiting list for heart or lung transplantation - patients' experiences of information and support.

The aim of the study was to describe the patients' experiences of the information and support they received after being placed on the waiting list for a heart or lung transplant. The design was qualitative, and the critical incident technique was used. Incidents were collected via interviews with 21 patients. A total of 357 important events, both positive and negative, were identified and divided into two main groups: Body and mind and Information and support. The following subgroups emerged: chronic illness affects the patients, attitudes towards the future, impact of information, support from public organizations, and support from the private sphere. The patients showed knowledge of and involvement in the upcoming transplantation, which indicates that healthcare professionals managed to convey information and support effectively. By identifying the importance of factors such as body and mind and information and support for patients recently accepted for heart or lung transplantation, healthcare professionals are able to make specific improvements in the information and support that they provide. An important implication is to enhance the knowledge regarding transplant patients in other institutions and improve cooperation. Specific support programs to assist patients who have dependent children should be developed. Society needs to become more enlightened about organ donation and transplantation patients.

Pregnancy in heart- and heart/lung recipients can be problematic.

OBJECTIVE: The first successful pregnancy after heart transplantation was reported in 1988. Worldwide experience with heart and heart/lung transplanted (H-HLTx) pregnant women is limited. To expand this knowledge the collaborating Nordic thoracic transplant centers wanted to collect information on all such pregnancies from their centers. DESIGN: Information was retrospectively collected on all H-HLTx pregnancies in the Nordic countries. RESULTS: A total of 25 women have had 42 pregnancies and all survived the gestation. Minor complications were increasing incidence of proteinuria, hypertension and diabetes. Major problems were two rejections (early post partum), two severe renal failures, seven pre-eclampsias and 17 abortions. Five women died two to 12 years after delivery. Of 25 live born children, one was born with cancer and one died early after inheriting the mother's cardiomyopathy. CONCLUSION: Pregnancy after H-HLTx can be successful for both mother and child. There are, however, many obstacles which should be addressed. Respecting the couple's desire for children the attitude should be carefully, not too optimistic, after proper pre-pregnant information and counseling. Delivery should preferably take place at the transplant center.

Effect of everolimus introduction on cardiac allograft vasculopathy--results of a randomized, multicenter trial.

BACKGROUND: Everolimus reduces the progression of cardiac allograft vasculopathy (CAV) in de novo heart transplant (HTx) recipients, but the influence on established CAV is unknown. METHODS: In this Nordic Certican Trial in Heart and lung Transplantation substudy, 111 maintenance HTx recipients (time post-HTx 5.8 ± 4.3 years) randomized to everolimus+reduced calcineurin inhibitor (CNI) or standard CNI had matching (intravascular ultrasound) examinations at baseline and 12 months allowing accurate assessment of CAV progression. RESULTS: No significant difference in CAV progression was evident between the treatment groups (P = 0.30). When considering patients receiving concomitant azathioprine (AZA) therapy (n = 39), CAV progression was attenuated with everolimus versus standard CNI (Δmaximal intimal thickness 0.00 ± 0.04 and 0.04 ± 0.04 mm, Δpercent atheroma volume 0.2% ± 3.0% and 2.6% ± 2.5%, and Δtotal atheroma volume 0.25 ± 14.1 and 19.8 ± 20.4 mm(3), respectively [P < 0.05]). When considering patients receiving mycophenolate mofetil (MMF), accelerated CAV progression occurred with everolimus versus standard CNI (Δmaximal intimal thickness 0.06 ± 0.12 vs. 0.02 ± 0.06 mm and Δpercent atheroma volume 4.0% ± 6.3% vs. 1.4% ± 3.1%, respectively; P < 0.05). The levels of C-reactive protein and vascular cell adhesion molecule-1 declined significantly with AZA+everolimus, whereas MMF+everolimus patients demonstrated a significant increase in levels of C-reactive protein, vascular cell adhesion molecule-1, and von Willebrand factor. CONCLUSIONS: Conversion to everolimus and reduced CNI does not influence CAV progression among maintenance HTx recipients. However, background immunosuppressive therapy is important as AZA+everolimus patients demonstrated attenuated CAV progression and a decline in inflammatory markers, whereas the opposite pattern was seen with everolimus+MMF. The different effect of everolimus when combined with AZA versus MMF could potentially reflect hitherto unknown interactions.