Background:The Scottish Intercollegiate Guidelines Network (SIGN) led work package three of the European collaborative project DECIDE which focused on improving the design of patient versions of clinical guidelines. Improving the way this information is presented helps to empower people to take an active role in shared decision making.
Objectives: The aim of the present study was to engage with parents and carers of children and young people with autism spectrum disorder (ASD) to test an improved patient version of the guideline.
Methods:Parents and carers were recruited from across Scotland. User testing involved a formal ‘think aloud’ process and semi-structured interview to guide users through the booklet. Sessions took place individually and were recorded and transcribed. Key findings were analysed and themed using the honeycomb user experience model.
Results:Fourteen user testing sessions were conducted. Key facilitators for usability and desirability of the guideline included chunking of text, consistent use of colour coding and boxes to highlight important information. Language that is easy to read, and written to promote partnership between healthcare professionals and service users was seen positively. The booklet was valued by users, who expressed a desire to have it. Clearly outlining key stages in the patient journey was useful, and made parents feel empowered. There was not a clear consensus on the usefulness of rating the strength of evidence underlying recommendations. There was a lack of awareness of this booklet, which is a major barrier to the public finding and accessing patient versions of guidelines.
Conclusions:This user testing enabled us to develop a tailored and practical booklet for the target group. There is a fine balance between providing sufficient information and information overload. Patient versions of guidelines need to clearly state their intended purpose, and how a user can make use of them. The findings have implications for presenting evidence-based information. It appears that evidence grading should be included in patient versions but kept as simple as possible.