Developing and testing a patient information booklet for thrombolysis used in acute stroke

Abstract

Objective Thrombolysis decreases the chance of post-stroke dependence, although its use carries significant risk, notably of intra-cerebral haemorrhage. Patients (and families) face an important risk/benefit decision before consenting. We drafted a patient information booklet for this purpose, and applied performance-based readability testing with the aim that the most important information in the booklet could be found and understood. Methods The booklet was developed with reference to best practice in information writing and design. We User-Tested its performance on 56 people without prior experience of stroke. After reading the booklet they were asked to find and explain 15 pieces of information. The booklet was revised according to its performance and re-tested, until each item was found and understood by at least 80% of participants. Key findings The four-page information booklet contained approximately 900 words, organised into six sections. A risk-palette graphic showed the chance of positive and negative outcomes. The booklet was tested on four participant cohorts and revised, including more bold text, re-wording, changing the title and changing the graphic to a coloured bar chart. Testing the final version on the fourth cohort of 20 people showed that each of the 15 tested items of information met the target of at least 80% participants being able to find and understand it. Conclusions The use of information design and User Testing produced a booklet that is understandable by people with no prior experience of stroke. User Testing is an inexpensive and quick method to ensure that information intended for patients is usable.