Objective The proportion of patients who can be bridged with left ventricular assist devices to myocardial recovery and the long-term outcome of these patients is unknown. Methods We investigated the ...outcomes of patients bridged to recovery compared with those bridged to transplantation. All left ventricular assist devices were implanted as a bridge to transplantation with a very proactive program of promoting myocardial recovery. A total of 40 patients were bridged to recovery and 52 to transplantation. Of the bridged to recovery (explanted) group, 33 were men (age, 32.8 ± 11.8 years), 37 had dilated cardiomyopathy (familial in 3, peripartum cardiomyopathy in 3) and 3 had myocarditis. Of the bridged to transplantation (transplanted) group, 42 were men (age, 42.3 ± 12.5 years; P < .0005 vs bridged to recovery). The diagnosis was ischemic heart disease in 24, dilated cardiomyopathy in 21 (only 13 received drug therapy), hypertrophic obstructive cardiomyopathy in 2, arrythmogenic right ventricular dysplasia in 2, myocarditis in 1, and congestive heart disease in 2. Results The survival rate was 89.9%, 73.9%, and 73.9% and 80.4%, 78.3, and 78.3% in the explanted and transplanted groups at 1, 5, and 7 years, respectively. In total, 12 (23%) patients bridged transplantation either died from, or required ventricular assist device support, for primary graft failure. Of the explanted patients, 4 (10%) subsequently required transplantation at 34, 512, 1019, and 1213 days (2 died 25 and 1867 days after transplantation and 2 were well after 1523 and 3199 days). The rate of transplant or ventricular assist device-free survival less noncardiac death for the bridged to recovery and bridged to transplantation groups, respectively, was 89.9%, 73.9%, and 73.9% and 80.4%, 78.3%, and 78.3% at 1, 3, and 7 years. At latest follow-up (1394 ± 1195 days for the bridged to recovery and 1913 ± 941 days for the bridged to transplantation group), 5 of the bridged to transplantation patients (9.6%) had malignancy, 34 (65.4%) had hypercholesterolemia, 25 (48.1%) had hypertension, and 7 (13.5%) had coronary disease. The creatinine was 125.5 ± 43.5 vs 95.2 ± 16.5 μmol/L for the bridged to transplantation and bridged to recovery groups ( P < .001). Conclusions The outcome after explantation for myocardial recovery is comparable, if not better than, after bridge to transplantation.
Fibrotic interstitial lung diseases (ILDs) are chronic and often progressive conditions resulting in substantial morbidity and mortality. Shortness of breath, a symptom often linked to oxygen ...desaturation on exertion, is tightly linked to worsening quality of life in these patients. Although ambulatory oxygen is used empirically in their treatment, there are no ILD-specific guidelines on its use. To our knowledge, no studies are available on the effects of ambulatory oxygen on day-to-day life in patients with ILD.
Ambulatory oxygen in fibrotic lung disease (AmbOx) is a multicentre, randomised controlled crossover trial (RCT) funded by the Research for Patient Benefit Programme of the National Institute for Health Research. The trial will compare ambulatory oxygen used during daily activities with no ambulatory oxygen in patients with fibrotic lung disease whose oxygen saturation (SaO
) is ≥94% at rest, but drops to ≤88% on a 6-min Walk Test. The randomised controlled trial (RCT) will evaluate the effects on health status (measured by the King's Brief ILD Questionnaire: K-BILD) of ambulatory oxygen used at home, at an optimal flow rate determined by titration at screening visit, and administered for a 2-week period, compared to 2 weeks off oxygen. Key secondary outcomes will include breathlessness on activity scores, as measured by the University of California San Diego Shortness of Breath Questionnaire, global patient assessment of change scores, as well as quality of life scores (St George's Respiratory Questionnaire), anxiety and depression scores (Hospital Anxiety and Depression Scale), activity markers measured by SenseWear Armbands, pulse oximetry measurements, patient-reported daily activities, patient- and oxygen company-reported oxygen cylinder use. The study also includes a qualitative component and will explore in interviews patients' experiences of the use of a portable oxygen supply and trial participation in a subgroup of 20 patients and carers.
This is the first RCT of the effects of ambulatory oxygen during daily life on health status and breathlessness in fibrotic lung disease. The results generated should provide the basis for setting up ILD-specific guidelines for the use of ambulatory oxygen.
National Clinical Trials Registry, identifier: NCT02286063 . Registered on 8 October 2014 (retrospectively registered).
To examine the associations between illness perception, self-care behaviour, and quality of life in patients admitted to hospital with a primary diagnosis of heart failure (HF), and the changes in ...these at 2 and 6 months after discharge.
Longitudinal questionnaire-based study.
Three London hospitals with specialist heart failure services.
A convenience sample of 88 patients (70% male, mean age 70) admitted to hospital with a primary diagnosis of heart failure were recruited prior to discharge. Participants were over the age of 18, able to understand English, and with the cognitive ability to complete the questionnaires. Thirty-eight patients did not provide follow-up data: 21 (24%) died during the 6-month follow-up period, and 17 (19%) did not return their post-discharge questionnaires.
The Revised Illness Perception Questionnaire, the Self-Care Heart Failure Index, Hospital Anxiety and Depression scale, and the Minnesota Living with Heart Failure (MLHF) Questionnaires were completed prior to discharge from hospital, and 2 and 6 months after discharge.
HF symptoms improved over time (MLHF score co-efficient 95%CI −0.915 −1.581, −0.250, P<0.001). Patients appeared to believe that many of the causes of their illness were outside their control. Although self-care maintenance (e.g. weighing daily) improved over time, this did not translate into increased involvement in self-care management (e.g. adjusting diuretic dose) or the ability to act on changes in symptoms. Self-care confidence was lower in those who reported a more negative emotional impact of their illness, but was higher in those who had high scores on illness coherence.
Six months following hospital discharge, patients’ symptom control had improved. Many continued to believe that their illness was outside their control, and although self-care maintenance improved this was not associated with greater self-care management, particularly if the patient's emotional state was negative, and their understanding of their condition was poor. Our data suggest that a more participative person-centred approach, tailoring the disease management programme to address the patient's illness beliefs and emotional state, assisting the individual to identify barriers and solutions, may help increase self-care confidence and management.
In fibrotic interstitial lung diseases, exertional breathlessness is strongly linked to health-related quality of life (HRQOL). Breathlessness is often associated with oxygen desaturation, but few ...data about the use of ambulatory oxygen in patients with fibrotic interstitial lung disease are available. We aimed to assess the effects of ambulatory oxygen on HRQOL in patients with interstitial lung disease with isolated exertional hypoxia.
AmbOx was a prospective, open-label, mixed-method, crossover randomised controlled clinical trial done at three centres for interstitial lung disease in the UK. Eligible patients were aged 18 years or older, had fibrotic interstitial lung disease, were not hypoxic at rest but had a fall in transcutaneous arterial oxygen saturation to 88% or less on a screening visit 6-min walk test (6MWT), and had self-reported stable respiratory symptoms in the previous 2 weeks. Participants were randomly assigned (1:1) to either oxygen treatment or no oxygen treatment for 2 weeks, followed by crossover for another 2 weeks. Randomisation was by a computer-generated sequence of treatments randomly permuted in blocks of constant size (fixed size of ten). The primary outcome, which was assessed by intention to treat, was the change in total score on the King's Brief Interstitial Lung Disease questionnaire (K-BILD) after 2 weeks on oxygen compared with 2 weeks of no treatment. General linear models with treatment sequence as a fixed effect were used for analysis. Patient views were explored through semi-structured topic-guided interviews in a subgroup of participants. This study was registered with ClinicalTrials.gov, number NCT02286063, and is closed to new participants with all follow-up completed.
Between Sept 10, 2014, and Oct 5, 2016, 84 patients were randomly assigned, 41 randomised to ambulatory oxygen first and 43 to no oxygen. 76 participants completed the trial. Compared with no oxygen, ambulatory oxygen was associated with significant improvements in total K-BILD scores (mean 55·5 SD 13·8 on oxygen vs 51·8 13·6 on no oxygen, mean difference adjusted for order of treatment 3·7 95% CI 1·8 to 5·6; p<0·0001), and scores in breathlessness and activity (mean difference 8·6 95% CI 4·7 to 12·5; p<0·0001) and chest symptoms (7·6 1·9 to 13·2; p=0·009) subdomains. However, the effect on the psychological subdomain was not significant (2·4 -0·6 to 5·5; p=0·12). The most common adverse events were upper respiratory tract infections (three in the oxygen group and one in the no-treatment group). Five serious adverse events, including two deaths (one in each group) occurred, but none were considered to be related to treatment.
Ambulatory oxygen seemed to be associated with improved HRQOL in patients with interstitial lung disease with isolated exertional hypoxia and could be an effective intervention in this patient group, who have few therapeutic options. However, further studies are needed to confirm this finding.
UK National Institute for Health Research.
A trustful relationship between transplant patients and their transplant team (interpersonal trust) is essential in order to achieve positive health outcomes and behaviors. We aimed to 1) explore ...variability of trust in transplant teams; 2) explore the association between the level of chronic illness management and trust; 3) investigate the relationship of trust on behavioral outcomes. A secondary data analysis of the BRIGHT study (ID: NCT01608477; https://clinicaltrials.gov/ct2/show/NCT01608477?id=NCT01608477&rank=1) was conducted, including multicenter data from 36 heart transplant centers from 11 countries across four different continents. A total of 1,397 heart transplant recipients and 100 clinicians were enrolled. Trust significantly varied among the transplant centers. Higher levels of chronic illness management were significantly associated with greater trust in the transplant team (patients: AOR= 1.85, 95% CI = 1.47-2.33,
< 0.001; clinicians: AOR = 1.35, 95% CI = 1.07-1.71,
= 0.012). Consultation time significantly moderated the relationship between chronic illness management levels and trust only when clinicians spent ≥30 min with patients. Trust was significantly associated with better diet adherence (OR = 1.34, 95%CI = 1.01-1.77,
= 0.040). Findings indicate the relevance of trust and chronic illness management in the transplant ecosystem to achieve improved transplant outcomes. Thus, further investment in re-engineering of transplant follow-up toward chronic illness management, and sufficient time for consultations is required.
To assess and compare the prevalence of medication nonadherence (MNA) (implementation and persistence) to immunosuppressants and co-medications in heart transplant recipients.
MNA prevalence was ...assessed using the Basel Assessment of Adherence to Immunosuppressive Medications Scale (self-report) and compared using logistic regression in a 4-continent sample of 1397 heart transplant recipients from 36 heart transplant centers in 11 countries.
MNA was significantly (α = 0.05) higher to co-medications than to immunosuppressants (taking nonadherence: 23.9% vs 17.3%; odds ratio OR = 1.5; 95% CI, 1.30–1.73; drug holiday: 5.7% vs 1.9%; OR = 3.17; 95% CI, 2.13–4.73; dose alteration: 3.8% vs 1.6%; OR = 2.46; 95% CI, 1.49–4.06; and discontinuation: 2.6% vs 0.5%; OR = 5.15; 95% CI, 2.36–11.20).
The observed MNA necessitates adherence-enhancing interventions encompassing the entire post–heart transplant medication regimen. ClinicalTrials.gov identifier: NCT01608477.
Transplant recipients are chronically ill patients, who require lifelong follow-up to manage co-morbidities and prevent graft loss. This necessitates a system of care that is congruent with the ...Chronic Care Model. The eleven-item self-report Patient Assessment of Chronic Illness Care (PACIC) scale assesses whether chronic care is congruent with the Chronic Care Model, yet its validity for heart transplant patients has not been tested.
We tested the validity of the English version of the PACIC, and compared the similarity of the internal structure of the PACIC across English-speaking countries (USA, Canada, Australia and United Kingdom) and across six languages (French, German, Dutch, Spanish, Italian and Portuguese). This was done using data from the cross-sectional international BRIGHT study that included 1378 heart transplant patients from eleven countries across 4 continents. To test the validity of the instrument, confirmatory factor analyses to check the expected unidimensional internal structure, and relations to other variables, were performed.
Main analyses confirmed the validity of the English PACIC version for heart transplant patients. Exploratory analyses across English-speaking countries and languages also confirmed the single factorial dimension, except in Italian and Spanish.
This scale could help healthcare providers monitor level of chronic illness management and improve transplantation care.
Clinicaltrials.gov ID: NCT01608477, first patient enrolled in March 2012, registered retrospectively: May 30, 2012.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Health literacy (HL) is a major determinant of health outcomes; however, there are few studies exploring the role of HL among heart transplant recipients. The objectives of this study were to: (1) ...explore and compare the prevalence of inadequate HL among heart transplant recipients internationally; (2) determine the correlates of HL; and (3) assess the relationship between HL and health-related behaviors.
A secondary analysis was conducted using data of the 1,365 adult patients from the BRIGHT study, an international multicenter, cross-sectional study that surveyed heart transplant recipients across 11 countries and 4 continents. Using the Subjective Health Literacy Screener, inadequate HL was operationalized as being confident in filling out medical forms none/a little/some of the time (HL score of 0 to 2). Correlates of HL were determined using backward stepwise logistic regression. The relationship between HL and the health-related behaviors were examined using hierarchical logistic regression.
Overall, 33.1% of the heart transplant recipients had inadequate HL. Lower education level (adjusted odds ratio AOR 0.24, p < 0.001), unemployment (AOR 0.69, p = 0.012) and country (residing in Brazil, AOR 0.25, p < 0.001) were shown to be associated with inadequate HL. Heart transplant recipients with adequate HL had higher odds of engaging in sufficient physical activity (AOR 1.6, p = 0.016). HL was not significantly associated with the other health behaviors.
Clinicians should recognize that almost one third of heart transplant participants have inadequate health literacy. Furthermore, they should adopt communication strategies that could mitigate the potential negative impact of inadequate HL.
Abstract Objectives The objectives of this study were to: (1) explore the proportion of HTx centers that have a multidisciplinary team and (2) assess the relationship between multidisciplinarity and ...the level of chronic illness management (CIM). Background The International Society for Heart and Lung Transplantation (ISHLT) recommends a multidisciplinary approach in heart transplant (HTx) follow-up care but little is known regarding the proportion of HTx centers that meet this recommendation and the impact on patient care. HTx centers with a multidisciplinary team may offer higher levels of CIM, a care model that has the potential to improve outcomes after HTx. Methods We conducted a secondary analysis of the BRIGHT study, a cross-sectional study in 11 countries. Multidisciplinarity in the 36 HTx centers was assessed through HTx director reports and was defined as having a team that was composed of physician(s), nurse(s), and another healthcare professional (either a social worker, psychiatrist, psychologist, pharmacist, dietician, physical therapist, or occupational therapist). CIM was assessed with the Patient Assessment of Chronic Illness Care (PACIC). Multiple linear regression assessed the relationship between multidisciplinarity and the level of CIM. Results Twenty-nine (80.6%) of the HTx centers had a multidisciplinary team. Furthermore, multidisciplinarity was significantly associated with higher levels of CIM ( β = 5.2, P = 0.042). Conclusion Majority of the HTx centers follows the ISHLT recommendation for a multidisciplinary approach. Multidisciplinarity was associated with CIM and point toward a structural factor that needs to be in place for moving toward CIM.
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