Abstract
BackgroundProvision of consumer information and patient education are considered an essential part of chronic disease management programmes developed for patients with heart failure. This study aimed to review the quality and availability of consumer information materials for people with heart failure in Australia.MethodsThe availability of consumer information was assessed through a questionnaire-based survey of the major organisations in Australia known, or thought, to be producing or using consumer materials on heart failure, including hospitals. The questionnaire was designed to explore issues around the use, production and dissemination of consumer materials. Only groups that had produced consumer information on heart failure were asked to complete the totality of the questionnaire.The quality of information booklets was assessed by using a standardised checklist.ResultsOf 101 organisations which were sent a questionnaire, 33 had produced 61 consumer resources on heart failure including 21 information booklets, 3 videos, 5 reminder fridge magnets, 7 websites, 15 self-management diaries and 10 self-management plans. Questionnaires were completed for 40 separate information resources. Most had been produced by hospitals or health services. Two information booklets had been translated into other languages. There were major gaps in the availability of these resources as more than half of the resources were developed in 2 of the 8 Australian states and territories, New South Wales and Victoria.Quality assessment of 19 information booklets showed that most had good presentation and language. Overall eight high quality booklets were identified. There were gaps in terms of topics covered, provision of references, quantitative information about treatment outcomes and quality and level of scientific evidence to support medical recommendations. In only one case was there evidence that consumers had been involved in the production of the booklets.ConclusionKey findings arising from the study included the need to develop a nationally coordinated approach for increasing the dissemination of information resources on heart failure. While the more recent publication of a booklet by the National Heart Foundation may have improved the situation, dissemination of written information materials may remain sub-optimal, especially among patients who are not enrolled in chronic heart failure management programmes.
Highlights
Provision of consumer information and patient education are considered an essential part of chronic disease management programmes developed for patients with heart failure
Questionnaires were completed for 40 separate information resources
Key findings arising from the study included the need to develop a nationally coordinated approach for increasing the dissemination of information resources on heart failure
Summary
Provision of consumer information and patient education are considered an essential part of chronic disease management programmes developed for patients with heart failure. This study aimed to review the quality and availability of consumer information materials for people with heart failure in Australia. 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. That consumer information materials in general may present serious shortcomings [5,6] 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]
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