Heart failure is a chronic and complex condition with high morbidity and mortality. It represents a major reason for seeking health care, accounts for a high proportion of health care expenditure, and is expected to continue to rise in prevalence, especially among older people 1. Hospitalisations for heart failure may be caused by sub-optimal medication management or inadequate discharge planning but also by the patients' failure to adhere to medical recommendations and to engage in self-care behaviour in order to prevent further deterioration 2. Poor patient knowledge is associated with poor prognosis in patients in heart failure 3. The implementation of self-management programmes including patient education has been shown to be successful in improving health outcomes. A recent systematic review of randomised controlled trials of self-management interventions showed that self-management decreased all-cause and heart failure hospital readmissions significantly 4. While it is difficult to assess the specific effect of patient information 2, the development of patient information resources is one of the first steps of any disease or self-management programme for patients with heart failure. Several studies have shown, however, that consumer information materials in general may present serious shortcomings 56. They may omit relevant data, fail to give a balanced view of the effectiveness of different treatments, and ignore uncertainties 5. They may have been developed without consumer input, with consequent deficiencies apparent 7.

Another critical issue is the availability and the dissemination of consumer resources. Several studies have shown that outpatients with heart failure may lack appropriate information and/or knowledge on their condition 2. In New Zealand, a study found that, in a random sample of 62 patients receiving care for chronic heart failure in 30 different medical practices, 40% of the patients did not understand the nature and seriousness of their condition 8. An American study showed that, out of 113 patients surveyed, approximately 40% of the patients did not recognize the importance of weighing themselves daily 9.

The main objectives of this study were to assess the quality of consumer information materials on heart failure developed in Australia and to evaluate their availability and dissemination.

The availability and dissemination of consumer information materials was assessed through a survey of the major organisations or groups in Australia known, or thought, to be producing or using consumer materials on heart failure. Of 136 groups or organisations contacted initially, 101 groups indicated they had either produced heart failure resources, were in the process of producing resources or were using resources produced by other organisations, and were sent the questionnaire. This included 71 major public and private hospitals in each of the 8 Australian states and territories, 23 area health services, 1 private health insurer, 3 professional organisations and 3 drug companies. The questionnaire was emailed to a specific contact person within each of the identified groups where possible. Organisations that did not respond to the initial mail-out of the questionnaire were followed up with at least one email or telephone message. Requests for participation were also posted in electronic newsletters or discussion groups such as the "Network news" for National Prescribing Service (NPS) facilitators in the divisions of general practice and the special interest group of Chronic Heart Failure coordinators in Victoria. The survey was conducted from March to June 2003.

The questionnaire was designed to explore issues around the use, production and dissemination of consumer materials, including the type of material produced (brochure, videotape, audiotape, web-based resource), the level of consumer input into the production process, the source of funding, the target groups, the mechanisms used to disseminate the materials, the range of settings to which the materials were distributed, the success of dissemination practices, the organisation's willingness to share materials as an education resource, the possible barriers to the sharing of materials, and the use of heart failure resources produced by other groups. The level of consumer input was categorised as high (involvement of consumers at each stage of the production process), moderate (involvement of consumers at one stage at least) or no input. A pilot version of the questionnaire was tested by three health professionals working in the heart failure area and the final version incorporated their suggestions.

Only groups that had produced consumer information on heart failure were asked to complete the totality of the questionnaire. They had to fill in a separate questionnaire for each consumer material produced. The groups that had not produced consumer information were asked to answer whether they were currently using consumer information materials produced by other groups and whether they had any suggestions for improving the dissemination of consumer information.

The study protocol was approved by the Human Research Ethics Committee, University of South Australia. Participants who indicated that their group/organisation had produced consumer resources about heart failure were asked to provide, where possible, copies of the material developed to the study team. Twenty-six government or government-funded health websites were also searched to identify any consumer information on heart failure.

All materials received were categorised by type of resource. The quality of information booklets was assessed by using the "Checklist for Assessing Written Consumer Health Information", developed by the Centre for Clinical Effectiveness and the Health Issues Centre for the Department of Human Services in Victoria 7. It consisted of 43 questions divided into 4 sections on presentation, language, content and treatment options. The overall quality of information booklets was rated from 1 (high quality with very few shortcomings) to 5 (poor quality with very serious shortcomings). A narrative review of the information booklets in terms of their overall presentation and the range of topics included was also undertaken. Data from questionnaires and quality assessments were analysed with the SPSS statistical software and descriptive statistics were produced.

To our knowledge, this study is the only study which has assessed the availability of consumer information resources for patients with heart failure at the national level. Some studies have assessed the quality of information resources for other diseases 61011 but none has looked at the dissemination of these resources.

Our survey identified 61 different consumer resources on heart failure, most of which were information booklets, self-management diaries or self-management action plans. This represents a significant number and variety of consumer resources developed in Australia in recent years. However, as this seems to have been encouraged by the implementation of short-term local disease management projects, the issues of sustainability and currency of consumer resources were raised by several respondents.

Dependency on drug company funding was also identified as a contentious area with the main consumer resources in 2 states partially or totally funded by drug companies, as well as the 3 videotapes identified. Materials produced with such funding may tend to be biased in favour of the company's products 12. Reliance on drug companies' funding may obligate health professionals to reciprocate in some way such as in increasing the prescriptions of the company's products 13.

Our findings also showed that dissemination of consumer resources was limited in most states. More than half of the consumer resources had been developed in 2 states only. Regional hospitals seemed to have a more limited range of resources available to use with their patients than metropolitan hospitals. Consumer resources specifically developed for dissemination in general practice were limited to a self-management plan on a website and a brief, out-dated, print-out available in a prescribing software. Health services may have access to national resources, such as the National Heart Foundation booklet but may not have the structures to allow them to use resources as part of specific disease management programmes. In addition, some patients who have a diagnosis of heart failure may never come into contact with specialised services where they would receive such resources. In 2004–5, only a minority (8%) of Australian patients were managed in chronic heart failure management programs 14.

Strategies to improve the availability and dissemination of heart failure consumer resources across the whole range of health care settings as well as support groups and carers' organisations need to be explored. The most frequent suggestion made by respondents to both questionnaires was to develop a nationally coordinated approach and set up a database, clearinghouse or website easily accessible to both health professionals and consumers, which identifies high quality consumer resources and/or provides free access to them. In February 2004, in response to the findings of this study, the National Institute of Clinical Studies (NICS) launched an online directory to feature the four highest quality information booklets identified in this study. However, the directory was discontinued two years later when an evaluation showed a low level of awareness of the directory amongst health care professionals (< 10%) and a low level of usage of the directory amongst those who were aware of the directory 15. Our study coincided with the national launch of the National Heart Foundation booklet. In 2008, this booklet was updated and tested among patients. It is likely that the availability of this booklet may have changed the patterns of production and use of consumer information on heart failure in Australia in the recent years. However, the dissemination of consumer information resources on heart failure, especially by general practitioners, remains a critical issue. A 2006 survey of 240 Australian GPs showed that 73.9% did not provide any written information on heart failure, 15.1% provided the Heart Foundation booklet and 10.9% provided other types of information, mainly the prescribing software heart failure leaflet 15. The provision of information on the Internet is helpful but cannot be the only answer. Provision of consumer information needs to be integrated into medical care, and health services need to be designed to make consumer information a key commodity accessible to all patients as is the case for other health care commodities such as medicines and diagnostic tests 16.

The quality assessment of 19 information booklets showed that, overall, the presentation and language were appropriate and that information was provided in a balanced and non-biased way in most booklets. There were gaps in terms of topics covered (such as epidemiology of the disease, prognosis, emotional aspects), and types of information included, such as references, areas of uncertainties in knowledge, quantitative information about treatment outcomes and information on the quality and level of scientific evidence to support medical recommendations. However, it should be acknowledged that the balance between comprehensiveness of the information provided and the ability to be understood by patients with a wide range of literacy levels and information needs is difficult to achieve.

There was no explicit indication that consumers had been involved in the production of the booklets except in one case. Consumer involvement may in fact have been higher as respondents to the questionnaires reported that consumers had some type of input in two thirds of the consumer resources identified. The patient's expanding role in making decisions and the complexity of treatment options require that consumer resources be developed to facilitate the patient's informed choice and self-management behaviour 16. While it is generally agreed that consumer resources should be based on a comprehensive evaluation of the research related to the specific illness 17, consumer resources cannot be a simple translation of clinical guidelines. Several studies have shown an ontological dissociation between clinical observations of heart failure symptomatology and patients' beliefs and interpretations of their experiences of the disease 1819. Granger suggested that more targeted clinical interventions should be developed by learning to think differently from both the patient and provider perspectives 18. Patient education should aim to close the gap between patients' experiences of illness and the clinical interpretation of the disease while targeting barriers to learning such as misconceptions and functional and cognitive limitations 20. It is therefore essential that consumers are actively engaged in the production of all consumer information materials.

While this study aimed to provide an accurate picture of the availability of consumer resources in Australia in contacting a wide range of health information providers including all hospitals in the major metropolitan centers, we did not monitor the proportion of patients with heart failure actually receiving information on heart failure. Moreover, many patients are managed mainly by their general practitioner and may not come near a specialty service, although the situation may change in the future with the funding of heart failure community services in states such as Queensland 2.

We used a standardized checklist to assess the quality of information booklets. However, there is always a level of subjectivity involved in rating criteria such as the completeness or the currency of the information provided. In the King's Fund seminal report on the assessment of the quality of patient information materials, patients and specialists were rating separately the quality of patient information materials on various health problems 10. They did not always agree and in some cases the materials were ranked quite differently by the two groups. In our study, the quality assessment was undertaken by a drug information pharmacist with extensive skills in critical appraisal of the health literature. Patients, however, are the only ones who can assess how easy, or hard, it is for them to read and understand the information and how personally relevant, or useful, the information is.

Another limitation is that the assessment focused on the quality of the information booklets only, whereas several hospitals were using a set of consumer resources, rather than a single resource, such as an information booklet plus a self-management action plan and patient diary, as well as allied health leaflets on exercise training and medications. The quality of the information provided in those hospitals cannot be judged on the quality rating obtained for the information booklet alone.

Consumer information is considered as an essential part of patient education. It provides support for informed choice and self-management behaviour and is a key component of all disease management programmes of patients with heart failure. The dissemination and the quality of consumer resources on heart failure in Australia still need to be enhanced to improve patient outcomes and answer the mounting need for better quality patient information.

The authors declare that they have no competing interests.

AIV and SJS designed the study, collected, analysed and interpreted data and drafted the manuscript. SMP had the idea of the study, participated in the design and the interpretation of the results, and drafted the manuscript. All authors read and approved the final manuscript.