Collaborative palliative care for advanced heart failure: outcomes and costs from the 'Better Together' pilot study.

BACKGROUND: Patients with heart failure often receive little supportive or palliative care. 'Better Together' was a 2-year pilot study of a palliative care service for patients with advanced congestive heart failure (CHF). OBJECTIVE: To determine if the intervention made it more likely that patients would be cared for and die in their place of choice, and to investigate its cost-effectiveness. METHODS: This pragmatic non-randomised pilot evaluation was set in two English primary care trusts (Bradford and Poole). Prospective patient-level data on outcomes and costs were compared with data from a historical control group of clinically comparable patients. Outcomes included death in preferred place of care (available only for the intervention group) and 'hospital admissions averted'. Costs included medical procedures, inpatient care and the direct cost of providing the intervention. RESULTS: 99 patients were referred. Median survival from referral was 48 days in Bradford and 31 days in Poole. Most patients who died did so in their preferred place of death (Bradford 70%, Poole 77%). An estimated 14 and 18 hospital admissions for heart failure were averted in Bradford and Poole, respectively. The average cost-per-heart failure admission averted was £1529 in Bradford, but the intervention was cost saving in Poole. However, there was considerable uncertainty around these cost-effectiveness estimates. CONCLUSIONS: This pilot study provides tentative evidence that a collaborative home-based palliative care service for patients with advanced CHF may increase the likelihood of death in place of choice and reduce inpatient admissions. These findings require confirmation using a more robust methodological framework.

Living with heart failure; patient and carer perspectives.

Patients with heart failure have multiple readmissions to hospital, a poor prognosis and varying quality of life. This paper explores how patients with heart failure and their family carers cope with daily life. 36 patients and 20 family caregivers were interviewed in five centres in the UK. Analysis showed that living with heart failure can be frightening, restrictive and distressing for both patients and their family carers. Patients found most difficulty coping with functional limitation and adapting to living with heart failure, but also reported particular problems due to side effects of medications, co-morbidities and a lack of psychosocial support and rehabilitation services. Those with less socio-economic resources found it harder to cope. Patients from minority ethnic groups held different beliefs about the illness and its treatment, and some had profound problems communicating with health and social care professionals that made managing the disease even more difficult. Caring for a person with heart failure often has a considerable impact on the psychological and physical health of family caregivers. Psychosocial support and rehabilitation services provided at diagnosis and after an acute episode would enable families to better manage living with this syndrome.

Cognitive-behavioural rehabilitation programme for patients with an implanted cardioverter defibrillator: a pilot study.

OBJECTIVES: The effectiveness of a comprehensive 12-week CR programme for ICD patients was evaluated. DESIGN: All surviving and suitable ICD patients being cared for by a regional implantation centre were invited to attend a 12-week cognitive-behavioural cardiac rehabilitation programme that had been modified to meet the needs of this group. Patients assenting were randomized to either an immediate treatment or a waiting treatment group. Measures were taken prior to randomization, at the end of the treatment or waiting period, at the end of the second treatment group for that group only and at three months post-treatment for both groups. OUTCOME MEASURES: The Hospital Anxiety and Depression Scale, the Total Concerns Questionnaire, the Quality of Life after Myocardial Infarction Questionnaire, the EuroQual (subjective health rating scale), the Shuttle Test and a number of ICD shocks and ATP episodes were used in this study. RESULTS: For those patients willing and able to attend, the cognitive-behavioural CR programme produced significant benefits in terms of psychological and functional adaptation to living with the device. CONCLUSIONS: A comprehensive 12-week CR programme that incorporated both psychological and exercise-based components significantly reduced anxiety and depression and improved quality of life of ICD patients. It is not clear if these benefits are sustained.

Development and validation of a short measure of health status for individuals with acute myocardial infarction: the myocardial infarction dimensional assessment scale (MIDAS).

The purpose of this study was to develop and validate a disease-specific health status measure for individuals with myocardial infarction (MI). The development of the myocardial infarction dimensional assessment scale (MIDAS) followed three main stages. Stage 1 consisted of in-depth, semi-structured, exploratory interviews conducted on a sample of 31 patients to identify areas of salience and concern to patients with MI. These interviews generated 48 candidate questions. In stage 2 the 48-item questionnaire was used in a postal survey to identify appropriate rephrasing/shortening, to determine acceptability and to help identify sub-scales of the instrument addressing different dimensions of MI. Finally, in stage 3 the construct validity of MIDAS subscales was examined in relation to clinical and other health outcomes. A single centre (district general hospital) in England was used for stages 1 and 3 and a national postal survey was conducted for stage 2. A total of 410 patients were recruited for the national survey (stage 2). Full data were available on 348 (85%) patients. One hundred and fifty-five patients were recruited to test construct validity (stage 3). The MIDAS contains 35 questions measuring seven areas of health status: physical activity, insecurity, emotional reaction, dependency, diet, concerns over medication and side effects. The measure has high face, internal and construct validity and is likely to prove useful in the evaluation of treatment regimes for MI.

A randomised controlled trial of a self-management plan for patients with newly diagnosed angina.

BACKGROUND: There are approximately 1.8 million patients with angina in the United Kingdom, many of whom report a poor quality of life, including raised levels of anxiety and depression. AIM: To evaluate the effect of a cognitive behavioural disease management programme, the Angina Plan, on psychological adjustment in patients newly diagnosed with angina pectoris. DESIGN OF STUDY: Randomised controlled trial. SETTING: Patients from GP practices in a Northern UK city (York) between April 1999 and May 2000. METHOD: Recruited patients were randomised to receive the Angina Plan or to a routine, practice nurse-led secondary prevention educational session. RESULTS: Twenty of the 25 practices invited to join the study supplied patients' names; 142 patients attended an assessment clinic and were randomised There were no significant differences in any baseline measures. At the six month post-treatment follow-up, 130 (91%) patients were reassessed. When compared with the educational session patients (using analysis of covariance adjusted for baseline scores in an intention-to-treat analysis) Angina Plan patients showed a greater reduction in anxiety (P = 0.05) and depression (P = 0.01), the frequency of angina (reduced by three episodes per week, versus a reduction of 0.4 per week, P = 0.016) the use of glyceryl trinitrate (reduced by 4.19 fewer doses per week versus a reduction of 0.59 per week, P = 0.018), and physical limitations (P<0.001: Seattle Angina Questionnaire). They were also more likely to report having changed their diet (41 versus 21, P<0.001) and increased their daily walking (30 versus 2, P<0.001). There was no significant difference between the groups on the other sub-scales of the Seattle Angina Questionnaire or in any of the medical variables measured. CONCLUSION: The Angina Plan appears to improve the psychological, symptomatic, and functional status of patients newly diagnosed with angina.