Patient-reported outcome measures (PROMs) may be better understood as ‘user surveys’. They are usually a set of questions that healthcare professionals ask patients in order to understand their needs and experiences of health services. Each survey contains a range of concepts that are relevant to a particular type of service.
I recently completed a systematic review of the literature related to user surveys for augmentative and alternative communication (AAC). A systematic review is a type of literature review that uses consistent methods to collect, sort through and summarise all the research papers relevant to a specific question.
During this process the reviewer assesses the pedigree of the research paper by checking the detail with which it was written. This allows the researcher to judge the quality of the report.
My review identified 15 different surveys that have been used with AAC users. None of the surveys had been specifically developed for AAC users. None had been adapted or made accessible for people who have physical difficulties that may affect their ability to complete the survey. Not all of the reports described the concepts in the surveys. I collected the concepts as they were described in 12 of the surveys (62 concepts in total) and gathered them together into similar clusters or themes.
I developed 9 themes that described the concepts in the surveys: communication, thinking, independence, health, quality of life, physical, social, spiritual, AAC equipment. No one single survey covered all of these themes.
The detail reported within the research papers was often limited, which makes it difficult to assess the authenticity of the research. It is a bit like trying to bake a cake without a clear list of ingredients and set of instructions: the quality of the cake is likely to depend on the clarity of the recipe. The quality of the research papers in this review was not very good so the strength of the review findings is also limited.
I asked the group of experts who are advising me on my project what they thought about the themes that I developed from this review and they felt they were all important topics to ask about when evaluating AAC.
So, what next? I have carried out a second literature review exploring people’s experiences of using communication aids. I will use the results from this review, along with feedback from the expert group, to develop a set of questions. I will then carry out a number of interviews with people who use AAC and ask them these questions.
Combining all this information together will give me a really good understanding of what is important to people who use AAC about their equipment and the support that they receive. This will help me develop a user needs and experience survey specifically for AAC users. This can be used by AAC services to help involve service users more in choosing a device and tailoring support.
This summary was co-developed with the expert group for the Unspoken Voices Project
You can watch a version of this blog on YouTube: https://youtu.be/YvBBFO6lfqI
A full academic report for this systematic review can be found here: https://rdcu.be/bHgbW
All images in this blog were produced by www.sarahsmizz.com