Andrea Driscoll

Measuring self-care in chronic heart failure: A review of the psychometric properties of clinical instruments

Background:Improved self-care skills and behaviors are an important outcome of patient education and counseling. Both researchers and health professionals need to utilize instruments that are reliable and valid at measuring this outcome to advance our understanding as to the efficacy of clinical practice directed toward improving self-care. Objective:The aim of this study was to identify instruments that measure chronic heart failure (CHF) self-care and demonstrate their psychometric properties. Methods:A search of Medline, Cumulative Index to Nursing and Allied Health Literature, Medline, PsycArticles, Psychology and Behavioral Sciences Collection, and PsycINFO databases elucidated studies published between January 1980 and February 2009 that measure CHF self-care. The clinical instruments selected were disease-specific measures of CHF self-care behaviors that are promoted in best practice guidelines. Only instruments that reported estimates of reliability and validity were included in this review. Psychometric properties of the instruments were evaluated according to practice guidelines. Results:The literature search identified 14 instruments published in peer-reviewed journals that measured constructs that predict or correlate to self-care rather than self-care itself. Only 2 disease-specific measures of self-care were identified (Self-care Heart Failure Index [SCHFI] and European Heart Failure Self-care Behavior Scale [EHFScBS]) that have undergone rigorous psychometric testing in CHF populations. Five aspects of validity had been demonstrated with EHFScBS, and 6 aspects of validity had been demonstrated with SCHFI. Two of 3 aspects of reliability have been demonstrated in both instruments. Conclusion:Only 2 reliable and valid tools have been developed to specifically measure CHF self-care. Further use of these instruments in the research arena may reduce gaps in our understanding of CHF self-care and further shape clinical practice directed at improving it.

Comparison of self-care behaviors of heart failure patients in 15 countries worldwide

OBJECTIVE Clinicians worldwide seek to educate and support heart failure patients to engage in self-care. We aimed to describe self-care behaviors of patients from 15 countries across three continents. METHODS Data on self-care were pooled from 5964 heart failure patients from the United States, Europe, Australasia and South America. Data on self-care were collected with the Self-care of Heart Failure Index or the European Heart Failure Self-care Behavior Scale. RESULTS In all the samples, most patients reported taking their medications as prescribed but exercise and weight monitoring were low. In 14 of the 22 samples, more than 50% of the patients reported low exercise levels. In 16 samples, less than half of the patients weighed themselves regularly, with large differences among the countries. Self-care with regard to receiving an annual flu shot and following a low sodium diet varied most across the countries. CONCLUSION Self-care behaviors are sub-optimal in heart failure patients and need to be improved worldwide. PRACTICE IMPLICATIONS Interventions that focus on specific self-care behaviors may be more effective than general educational programs. Changes in some health care systems and national policies are needed to support patients with heart failure to increase their self-care behavior.

Heart Failure Self-care in Developed and Developing Countries

BACKGROUND Heart failure (HF) self-care is poor in developed countries like the United States, but little is known about self-care in developing countries. METHODS AND RESULTS A total of 2082 adults from 2 developed (United States and Australia) and 2 developing countries (Thailand and Mexico) were studied in a descriptive, comparative study. Self-care was measured using the Self-Care of HF Index, which provided scores on self-care maintenance, management, and confidence. Data were analyzed using regression analysis after demographic (age, gender, education), clinical (functional status, experience with the diagnosis, comorbid conditions), and setting of enrollment (hospital or clinic) differences were controlled. When adequate self-care was defined as a standardized score >or=70%, self-care was inadequate in most scales in most groups. Self-care maintenance was highest in the Australian sample and lowest in the Thai sample (P < .001). Self-care management was highest in the US sample and lowest in the Thai sample (P < .001). Self-care confidence was highest in the Mexican sample and lowest in the Thai sample (P < .001). Determinants differed for the three types of self-care (eg, experience with HF was associated only with self-care maintenance). CONCLUSION Interventions aimed at improving self-care are greatly needed in both the developed and the developing countries studied.

Management of heart failure

Heart failure is a complex clinical syndrome, with diagnosis based on typical symptoms, signs and supportive investigations. Investigations may include an electrocardiogram and chest x‐ray, but echocardiography is the definitive test. Plasma B‐type natriuretic peptide levels may also be useful in diagnosis among patients with breathlessness, particularly as a rule‐out test. Mainstay therapy for heart failure comprises lifestyle modification, pharmacotherapy and referral to a multidisciplinary heart failure program. Drug therapies focused on blockade of key activated neurohormonal systems are well established in systolic heart failure. First‐line pharmacotherapy consists of angiotensin‐converting enzyme (ACE) inhibitors (or angiotensin receptor blockers if the patient is intolerant to ACE inhibitors) and β‐blockers. These medications should be commenced at a low dose and slowly up‐titrated to the maximal tolerated dose. In selected patients, device‐based therapies are a useful adjunct in systolic heart failure. The most common of these are implantable cardioverter defibrillators and cardiac resynchronisation therapy. Most patients will receive both, as the indications overlap. Multidisciplinary approaches, including involvement of the patients general practitioner, are strongly recommended.

Gender differences in heart failure self-care: a multinational cross-sectional study.

BACKGROUND Despite a common view that women are better at self-care, there is very little evidence to support or challenge this perspective in the heart failure (HF) population. OBJECTIVE The purpose of this study was to determine if there are cross-cultural gender differences in self-reported HF self-care and to describe gender differences in the determinants of HF self-care. DESIGN, SETTING, AND PARTICIPANTS A secondary analysis was completed of cross-sectional study data collected on 2082 adults with chronic HF from the United States, Australia and Thailand. METHODS Comparisons were made between men and women regarding self-care maintenance, management and confidence as assessed by the Self-Care of Heart Failure Index, as well as the proportion of subjects engaged in adequate self-care. Multivariate comparisons were made to determine if gender explained sufficient variance in HF self-care and the likelihood of reporting adequate self-care, controlling for nine model covariates. RESULTS The sample was comprised of 1306 men and 776 women. Most (73.5%) had systolic or mixed systolic and diastolic HF and 45% had New York Heart Association class III or IV HF. Although small and clinically insignificant gender differences were found in self-care maintenance, gender was not a determinant of any aspect of HF self-care in multivariate models. Married women were 37% less likely to report adequate self-care maintenance than unmarried women. Comorbidities only influenced the HF self-care of men. Being newly diagnosed with HF also primarily affected men. Patients with diastolic HF (predominantly women) had poorer self-care maintenance and less confidence in self-care. CONCLUSION Differences in HF self-care are attributable to factors other than gender; however, there are several gender-specific determinants of HF self-care that help identify patients at risk for practicing poor self-care.

Tailoring consumer resources to enhance self-care in chronic heart failure

BACKGROUND Chronic heart failure (CHF) is associated with high hospitalisation and mortality rates and debilitating symptoms. In an effort to reduce hospitalisations and improve symptoms individuals must be supported in managing their condition. Patients who can effectively self-manage their symptoms through lifestyle modification and adherence to complex medication regimens will experience less hospitalisations and other adverse events. AIM The purpose of this paper is to explain how providing evidence-based information, using patient education resources, can support self-care. DISCUSSION Self-care relates to the activities that individuals engage in relation to health seeking behaviours. Supporting self-care practices through tailored and relevant information can provide patients with resources and advice on strategies to manage their condition. Evidence-based approaches to improve adherence to self-care practices in patients with heart failure are not often reported. Low health literacy can result in poor understanding of the information about CHF and is related to adverse health outcomes. Also a lack of knowledge can lead to non-adherence with self-care practices such as following fluid restriction, low sodium diet and daily weighing routines. However these issues need to be addressed to improve self-management skills. OUTCOME Recently the Heart Foundation CHF consumer resource was updated based on evidence-based national clinical guidelines. The aim of this resource is to help consumers improve understanding of the disease, reduce uncertainty and anxiety about what to do when symptoms appear, encourage discussions with local doctors, and build confidence in self-care management. CONCLUSION Evidence-based CHF patient education resources promote self-care practices and early detection of symptom change that may reduce hospitalisations and improve the quality of life for people with CHF.

Evidence-based chronic heart-failure management programmes: reality or myth?

Background: Chronic heart failure management programmes (CHF-MPs) have become part of standard care for patients with chronic heart failure (CHF). Objective: To investigate whether programmes had applied evidence-based expert clinical guidelines to optimise patient outcomes. Design: Prospective cross-sectional survey was used to conduct a national audit. Setting: Community setting of CHF-MPs for patients after discharge. Sample: All CHF-MPs operating during 2005–2006 (n = 55). 10–50 consecutive patients from 48 programmes were also recruited (n = 1157). Main outcome measures: (1) Characteristics and interventions used within each CHF-MP and (2) characteristics of patients enrolled into these programmes. Results: Overall, there was a disproportionate distribution of CHF-MPs across Australia. Only 6.3% of hospitals nationally provided a CHF-MP. A total of 8000 post-discharge CHF patients (median, 126; IQR, 26–260) were managed via CHF-MPs representing only 20% of the potential national case load. Significantly, 16% of the case load comprised patients in functional New York Heart Association class I with no evidence of these patients having had previous echocardiography to confirm a diagnosis of CHF. Heterogeneity of CHF-MPs in applied models of care was evident with 70% of CHF-MPs offering a hybrid model (a combination of heart failure outpatient clinics and home visits), 20% conducting home visits and 16% an extended rehabilitation model of care. Less than half (44%) allowed heart failure nurses to titrate medications. The main medications that were titrated in these programmes were diuretics (n = 23, 96%), β-blockers (n = 17, 71%), ACE inhibitors (n = 14, 58%) and spironolactone (n = 9, 38%). Conclusion: CHF-MPs are being implemented rapidly throughout Australia. However, many of these programmes do not adhere to expert clinical guidelines for the management of patients with CHF. This poor translation of evidence into practice highlights the inconsistency and questions the quality of health-related outcomes for these patients.

A systematic approach to chronic heart failure care: a consensus statement

The National Heart Foundation of Australia assembled an expert panel to provide guidance on policy and system changes to improve the quality of care for people with chronic heart failure (CHF). The recommendations have the potential to reduce emergency presentations, hospitalisations and premature death among patients with CHF. Best‐practice management of CHF involves evidence‐based, multidisciplinary, patient‐centred care, which leads to better health outcomes. A CHF care model is required to achieve this. Although CHF management programs exist, ensuring access for everyone remains a challenge. This is particularly so for Aboriginal and Torres Strait Islander peoples, those from non‐metropolitan areas and lower socioeconomic backgrounds, and culturally and linguistically diverse populations. Lack of data and inadequate identification of people with CHF prevents efficient patient monitoring, limiting information to improve or optimise care. This leads to ineffectiveness in measuring outcomes and evaluating the CHF care provided. Expanding current cardiac registries to include patients with CHF and developing mechanisms to promote data linkage across care transitions are essential. As the prevalence of CHF rises, the demand for multidisciplinary workforce support will increase. Workforce planning should provide access to services outside of large cities, one of the main challenges it is currently facing. To enhance community‐based management of CHF, general practitioners should be empowered to lead care. Incentive arrangements should favour provision of care for Aboriginal and Torres Strait Islander peoples, those from lower socioeconomic backgrounds and rural areas, and culturally and linguistically diverse populations. Ongoing research is vital to improving systems of care for people with CHF. Future research activity needs to ensure the translation of valuable knowledge and high‐quality evidence into practice.

Ethical dilemmas of a large national multi‐centre study in Australia: time for some consistency

AIMS AND OBJECTIVES To examine the impact and obstacles that individual Institutional Research Ethics Committee (IRECs) had on a large-scale national multi-centre clinical audit called the National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes Study. BACKGROUND Multi-centre research is commonplace in the health care system. However, IRECs continue to fail to differentiate between research and quality audit projects. METHODS The National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes study used an investigator-developed questionnaire concerning a clinical audit for heart failure programmes throughout Australia. Ethical guidelines developed by the National governing body of health and medical research in Australia classified the National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes Study as a low risk clinical audit not requiring ethical approval by IREC. RESULTS Fifteen of 27 IRECs stipulated that the research proposal undergo full ethical review. None of the IRECs acknowledged: national quality assurance guidelines and recommendations nor ethics approval from other IRECs. Twelve of the 15 IRECs used different ethics application forms. Variability in the type of amendments was prolific. Lack of uniformity in ethical review processes resulted in a six- to eight-month delay in commencing the national study. CONCLUSIONS Development of a national ethics application form with full ethical review by the first IREC and compulsory expedited review by subsequent IRECs would resolve issues raised in this paper. IRECs must change their ethics approval processes to one that enhances facilitation of multi-centre research which is now normative process for health services. RELEVANCE TO CLINICAL PRACTICE The findings of this study highlight inconsistent ethical requirements between different IRECs. Also highlighted are the obstacles and delays that IRECs create when undertaking multi-centre clinical audits. However, in our clinical practice it is vital that clinical audits are undertaken for evaluation purposes. The findings of this study raise awareness of inconsistent ethical processes and highlight the need for expedient ethical review for clinical audits.Aims and objectives.  To examine the impact and obstacles that individual Institutional Research Ethics Committee (IRECs) had on a large-scale national multi-centre clinical audit called the National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes Study. Background.  Multi-centre research is commonplace in the health care system. However, IRECs continue to fail to differentiate between research and quality audit projects. Methods.  The National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes study used an investigator-developed questionnaire concerning a clinical audit for heart failure programmes throughout Australia. Ethical guidelines developed by the National governing body of health and medical research in Australia classified the National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes Study as a low risk clinical audit not requiring ethical approval by IREC. Results.  Fifteen of 27 IRECs stipulated that the research proposal undergo full ethical review. None of the IRECs acknowledged: national quality assurance guidelines and recommendations nor ethics approval from other IRECs. Twelve of the 15 IRECs used different ethics application forms. Variability in the type of amendments was prolific. Lack of uniformity in ethical review processes resulted in a six- to eight-month delay in commencing the national study. Conclusions.  Development of a national ethics application form with full ethical review by the first IREC and compulsory expedited review by subsequent IRECs would resolve issues raised in this paper. IRECs must change their ethics approval processes to one that enhances facilitation of multi-centre research which is now normative process for health services. Relevance to clinical practice.  The findings of this study highlight inconsistent ethical requirements between different IRECs. Also highlighted are the obstacles and delays that IRECs create when undertaking multi-centre clinical audits. However, in our clinical practice it is vital that clinical audits are undertaken for evaluation purposes. The findings of this study raise awareness of inconsistent ethical processes and highlight the need for expedient ethical review for clinical audits.

Heterogeneity of heart failure management programs in Australia

Background: Heart Failure Management Programs (HFMPs) have proven to be cost-effective in minimising recurrent hospitalisations, morbidity and mortality. However, variability between the programs exists which could translate into variable health outcomes. Objective: To survey the characteristics of HFMPs throughout Australia and to identify potential heterogeneity in their organisation and structure. Method: Thirty-nine post-discharge HFMPs were identified from a systematic search of the Australian health-care system in 2002. A comprehensive 19-item questionnaire specifically examining characteristics of HFMPs was sent to co-ordinators of identified programs in early 2003. Results: All participants responded with six institutions (15%) indicating that their HFMP had ceased operations due to a lack of funding. The survey revealed an uneven distribution of the 33 active HFMPs operating throughout Australia. Overall, 4450 post-discharge HF patients (median: 74; IQR: 24–147) were managed via these programs, representing only 11% of the potential caseload for an Australia-wide network of HFMPs. Heterogeneity of these programs existed in respect to the model of care applied within the program (70% applied a home-based program and 18% a specialist HF clinic) and applied interventions (30% of programs had no discharge criteria and 45% of programs prevented nurses administering/titrating medications). Sustained funding was available to only 52% of the active HFMPs. Conclusion: Inequity of access to HFMPs in Australia is evident in relation to locality and high service demand, further complicated by inadequate funding. Heterogeneity between these programs is substantial. The development of national benchmarks for evidence-based HFMPs is required to address program variability and funding issues to realise their potential to improve health outcomes.