Jo Wray

Nonadherence Consensus Conference Summary Report

This report is a summary of a ‘Consensus Conference’ on nonadherence (NA) to immunosuppressants. Its aims were: (1) to discuss the state‐of‐the‐art on the definition, prevalence and measurement of NA, its risk factors and impact on clinical and economical outcomes and interventions and (2) to provide recommendations for future studies. A two‐day meeting was held in Florida in January 2008, inviting 66 medical and allied health adherence transplant and nontransplant experts. A scientific committee prepared the meeting. Consensus was reached using plenary and interactive presentations and discussions in small break‐out groups. Plenary presenters prepared a summary beforehand. Break‐out group leaders initiated discussion between the group members prior to the meeting using conference calls and e‐mail and provided a summary afterward. Conclusions were that NA: (a) is more prevalent than we assume; (b) is hard to measure accurately; (c) tends to confer worse outcomes; (d) happens for a number of reasons, and system‐related factors including the patients culture, the healthcare provider and the setting and (e) it is not currently known how to improve adherence. This consensus report provided some roadmaps for future studies on this complicated, multifaceted problem.

Effect of off-pump coronary artery bypass surgery on clinical, angiographic, neurocognitive, and quality of life outcomes: randomised controlled trial

Abstract Objective To compare the clinical, angiographic, neurocognitive, and quality of life outcomes of off-pump coronary artery bypass surgery with conventional coronary artery bypass grafting surgery using cardiopulmonary bypass. Design Randomised controlled clinical trial. Setting Tertiary cardiothoracic centre in Middlesex, England. Participants 168 patients (27 women) requiring primary isolated coronary artery bypass grafting surgery. Interventions Patients were randomised to conventional coronary artery bypass grafting surgery using cardiopulmonary bypass (n = 84) or off-pump coronary artery bypass surgery (n = 84), carried out by one surgeon. Angiographic examination was carried out at three months postoperatively. Neurocognitive tests were carried out at baseline and at six weeks and six months postoperatively. Main outcome measures Clinical outcome, graft patency at three months, neurocognitive function at six weeks and six months, and health related quality of life. Results Graft patency was evaluated by angiography in 151 (89.9%) patients and was similar between the cardiopulmonary bypass and off-pump groups (risk difference − 1%, 95% confidence interval − 5% to 4%), with the off-pump group considered the treatment group. Patients in the off-pump group required fewer blood transfusions (1.7 units v 1.0 unit, P = 0.02), shorter duration of mechanical ventilation (7.7 hours v 3.9 hours, P = 0.03), and shorter hospital stay (10.8 days v 8.9 days). Scores for neurocognitive function showed a significant difference in three memory subtests at six weeks and two memory subtests at six months in favour of the off-pump group. Conclusions Patients who underwent off-pump coronary artery bypass surgery showed similar patency of grafts, better clinical outcome, shorter hospital stay, and better neurocognitive function than patients who underwent conventional coronary artery bypass grafting surgery using cardiopulmonary bypass.

The waiting game: bridging to paediatric heart transplantation

BACKGROUND Although mechanical circulatory support might not increase the number of adults surviving to transplantation, because of the shortage of donor organs, the situation might be different for children. Our aim was to assess the effect of mechanical assist devices to bridge children with end-stage cardiomyopathy to heart transplantation. METHODS A 5-year retrospective review was undertaken with data from the UK paediatric transplant programme and from bridging to transplant done at two paediatric transplant centres in the UK. FINDINGS Between Jan 1, 1998 and Dec 31, 2002, 22 children with end-stage cardiomyopathy, median age 5.7 years (range 1.2-17), were supported by a mechanical assist device as a bridge to first heart transplantation, with a 77% survival rate to hospital discharge. Nine were supported by a paracorporeal ventricular assist device, six received transplantation, five survived to discharge (55%), with one late death. 13 were supported by extra-corporeal membrane oxygenation, and 12 were transplanted and survived to discharge (92%) with one late death. With urgent listing, the median waiting time for a heart was 7.5 days (range 1.5-22 days). The correlation between the proportion of patients bridged to transplantation and the proportion of patients dying while on the transplant waiting list was r=-0.93, p=0.02. INTERPRETATION Our findings lend support to the hypothesis that a national mechanical assist programme to bridge children to transplantation can minimise the number dying while on the heart transplant waiting list. In the context of urgent listing and a short waiting time, extra-corporeal membrane oxygenation seems to provide the safest form of support.

Predictors of poor mid-term health related quality of life after primary isolated coronary artery bypass grafting surgery

Objective: To assess the determinants of poor mid-term health related quality of life (HRQoL) at one year after primary isolated coronary artery bypass grafting (CABG). Methods: 463 patients who underwent primary isolated CABG for multivessel disease and came for their annual follow up at the outpatient clinic during one year at Harefield Hospital, Middlesex, were approached to participate in the present study. Prospective clinical data were collected as part of the clinical care of the patients and were retrospectively analysed when the patients consented to participate in the study at their outpatient visit. After their consent they were given three HRQoL assessment questionnaires. Scores, together with clinical data, were analysed by both univariate and multivariate analyses with regard to poor HRQoL outcome. Results: 437 (94.4%) patients consented to participate in the study and filled in the HRQoL questionnaires. Ten variables were identified in the univariate analysis as potential predictors of poor scores of the physical element of HRQoL; however, only three variables—gastrointestinal problems, congestive heart failure, and type D personality trait—predicted poor physical scores independently. Eleven variables were identified in the univariate analysis as potential predictors of poor scores of the mental element of HRQoL; however, only three variables—peripheral vascular disease, infective complications, and type D personality trait—predicted poor physical scores independently. Conclusion: Preoperative gastrointestinal problems, preoperative congestive heart failure, and type D personality trait were independent predictors of the poor physical component of HRQoL. Peripheral vascular disease, infective complications, and type D personality trait were independent predictors of the poor mental component of HRQoL. Interestingly, patients with type D personality were more than twice as likely to have poor physical HRQoL and more than five times as likely to have poor mental HRQoL.

Congenital heart disease and cardiac surgery in childhood: effects on cognitive function and academic ability

OBJECTIVE To evaluate changes in cognitive and academic functioning following cardiac surgery in children with congenital heart disease. DESIGN A prospective cross sectional study in which patients were assessed immediately before treatment and 12 months later. PATIENTS Three groups of children aged 3.5–17 years: a group with congenital heart disease awaiting surgery, another awaiting bone marrow transplantation, and a healthy comparison group. MAIN OUTCOME MEASURES Intelligence quotient and measures of academic attainment, evaluated with the British Ability Scales. RESULTS Preoperatively, children with cyanotic lesions showed deficits in comparison with those with acyanotic lesions. Postoperatively, children with cyanotic lesions showed a deterioration in performance and achieved significantly lower scores than those with acyanotic lesions. While there were significant differences between the congenital heart disease and bone marrow transplantation groups preoperatively, these were no longer apparent at follow up. CONCLUSIONS In contrast to previously published findings, the present results suggest that cardiac surgery does not result in early postoperative improvements in cognitive function for children with congenital heart disease. The nature of the cardiac lesion continues to affect cognitive and academic performance, even after surgery.

Validation of the Pediatric Cardiac Quality of Life Inventory

OBJECTIVE: The purpose of this multicenter study was to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI). METHODS: Seven centers recruited pediatric patients (8–18 years of age) with heart disease (HD) and their parents to complete the PCQLI and generic health-related quality of life (Pediatric Quality of Life Inventory [PedsQL]) and non–quality of life (Self-Perception Profile for Children [SPPC]/Self-Perception Profile for Adolescents [SPPA] and Youth Self-Report [YSR]/Child Behavior Checklist [CBCL]) tools. PCQLI construct validity was assessed through correlations of PCQLI scores between patients and parents and with severity of congenital HD, medical care utilization, and PedsQL, SPPC/SPPA, and YSR/CBCL scores. PCQLI test-retest reliability was evaluated. RESULTS: The study enrolled 1605 patient-parent pairs. Construct validity was substantiated by the association of lower PCQLI scores with Fontan palliation and increased numbers of cardiac operations, hospital admissions, and physician visits (P < .001); moderate to good correlations between patient and parent PCQLI scores (r = 0.41–0.61; P < .001); and fair to good correlations between PCQLI total scores and PedsQL total (r = 0.70–0.76), SPPC/SPPA global self-worth (r = 0.43–0.46), YSR/CBCL total competency (r = 0.28–0.37), and syndrome and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-oriented scale (r = −0.58 to −0.30; P < .001) scores. Test-retest reliability correlations were excellent (r = 0.78–0.90; P < .001). CONCLUSIONS: PCQLI scores are valid and reliable for children and adolescents with congenital and acquired HD and may be useful for future research and clinical management.

Loss to specialist follow-up in congenital heart disease; out of sight, out of mind

Objective To evaluate the scale and clinical importance of loss to follow-up of past patients with serious congenital heart disease, using a common malformation as an example. To better understand the antecedents of loss to specialist follow-up and patients’ attitudes to returning. Design Cohort study using NHS number functionality. Content and thematic analysis of telephone interviews of subset contacted after loss to follow-up. Patients, intervention and setting Longitudinal follow-up of complete consecutive list of all 1085 UK patients with repair of tetralogy of Fallot from single institution 1964–2009. Main outcome measures Survival, freedom from late pulmonary valve replacement, loss to specialist follow-up, shortfall in late surgical revisions related to loss to follow-up. Patients’ narrative about loss to follow-up. Results 216 (24%) of patients known to be currently alive appear not to be registered with specialist clinics; some are seen in general cardiology clinics. Their median age is 32 years and median duration of loss to follow-up is 22 years; most had been lost before Adult Congenital services had been consolidated in their present form. 48% of the late deaths to date have occurred in patients not under specialist follow-up. None of those lost to specialist follow-up has had secondary pulmonary valve replacement while 188 patients under specialist care have. Patients lost to specialist follow-up who were contacted by telephone had no knowledge of its availability. Conclusions Loss to specialist follow-up, typically originating many years ago, impacts patient management.

Depression and perceptions about heart failure predict quality of life in patients with advanced heart failure

BACKGROUND Mood is an independent predictor of mortality and quality of life (QoL) for people with heart failure. However, the underlying belief systems involved in mood are unknown. OBJECTIVE We sought to identify psychological and clinical variables predicting mood and QoL for people diagnosed with heart failure (HF). METHODS One hundred and forty-six HF patients were assessed with standardized measures, to determine their beliefs about HF, coping styles, mood, and QoL. RESULTS Patients with more negative beliefs about the consequences of HF and with less perceived control over symptoms showed maladaptive coping styles such as denial and behavioral disengagement, and more severe levels of depression and anxiety. Depression also independently predicted QoL outcomes. CONCLUSIONS Anxious and depressed patients have more negative beliefs about HF, leading to negative coping behaviors and poor QoL. Our evidence suggests that changing negative beliefs may improve the psychological well-being and QoL of patients, irrespective of disease severity.

Psychological functioning in parents of children undergoing elective cardiac surgery.

PURPOSE To assess levels of distress, the marital relationship, and styles of coping of parents of children with congenital heart disease, to evaluate any change in these parameters following elective cardiac surgery for their child, and to compare these parents with parents of children undergoing another form of hospital treatment, and with parents of healthy children. DESIGN A prospective study in which parents were assessed the day before the surgical procedure being undergone by their child, and 12 months afterwards. PARTICIPANTS We assessed three groups of parents of 75 children, aged from birth to 16.9 years. The first was a group whose children were undergoing surgery because of congenital heart disease, the second was a group whose children were undergoing transplantation of bone marrow, and the third was a group whose children were healthy. Measures used for assessment included the General Health Questionnaire, the Dyadic adjustment scale, and the Utrecht coping list. RESULTS Parents in both groups of children undergoing surgery had significantly higher rates of distress prior to the surgical procedures than did the parents of the healthy children, but within those whose children were undergoing cardiac surgery, there were no differences between parents of children with cyanotic and acyanotic lesions. Following treatment, there was a significant reduction in the levels of distress in both groups whose children had undergone surgery. There were few differences between any of the groups on the other parameters, and the evaluated indexes showed stability over time. CONCLUSION Despite elevated levels of psychological distress prior to surgical procedures, which had fallen after one year, the stability of other parameters of parental functioning over time suggests that the surgical interventions are of less significance than either factors attributable to the presence of chronic illness, or the individual characteristics of the parents.

Returning to school after heart or heart-lung transplantation: how well do children adjust?

Background. Up to 40% of children and adolescents with chronic illness experience school-related problems, including learning difficulties and problems in social adjustment and peer relationships. Despite the life-threatening nature of heart and heart-lung transplantation and the severity of illness, which results in the necessity for surgery, there is little information on the school performance of children after transplantation. Methods. Eighty-one children and adolescents were assessed with regard to their academic attainments and behavior at school at regular intervals after heart (n=47) or heart-lung (n=34) transplantation and comparisons made with a group of healthy children. Results. Cognitive ability and performance on academic attainments were within the normal range and did not change significantly as a function of time since transplant. However, performance was at a significantly lower level than that of the healthy children. Although the prevalence of behavior problems was only 8% at 6 months posttransplant, at 3 years, it had increased to 29% and, at 5 years, it was still 27%. Children with an initial diagnosis of congenital heart disease had more academic and behavioral difficulties than those with either cardiomyopathy or cystic fibrosis. Conclusions. A significant number of children who had undergone successful transplantation experienced difficulties at school. Contrary to expectations, educational problems were more prevalent in the medium term, rather than short term, after transplant. Initial diagnosis was a salient factor in posttransplant psychological functioning at school. Early intervention and close liaison with schools is indicated to reduce psychological morbidity and enhance adaptation within the school environment.