Chronic heart failure guidelines: do they adequately address patient need at the end-of-life?

A number of international guidelines have been developed to support primary care clinicians improve the quality of care for patients with chronic heart failure at the end of life. The objective of this study was to undertake a systematic evaluation of such guidelines in relation to end-of-life care.

A systematic literature search of research databases and guideline clearing houses was undertaken. The selected guidelines were independently assessed by two researchers using the AGREE II quality criteria. A data-extraction framework was devised based on the holistic needs assessment tool of the Gold Standards Framework. The content of each guideline was then analysed using an approach similar to that used for thematic analysis.

A total of 19 guidelines were included. Those guidelines with lower overall AGREE II scores covered fewer domains on the holistic needs assessment. Across all guidelines the lowest scoring domain was applicability and stakeholder involvement. Qualitative assessment showed that some guidelines adopt an unwavering disease orientated approach to assessing patient need. Guidance around continuity of care, out of hours care and after care was particularly poor in several guidelines. There was considerable heterogeneity in the evidence presented even amongst those guidelines that achieved high AGREE II scores.

Combined quantitative and qualitative assessment demonstrates the importance of rigorous guideline development. Whilst the variation in evidence presented could be a result of methodological heterogeneity in the development of guidelines, it raises important questions about the processes by which evidence, information and knowledge become transformed into clinical guidelines.