Eline Alons
HU University of Applied Sciences

The ability to communicate is a prerequisite for participating in daily life. Yet, communication does not always come naturally. Some children grow up with communication problems, such as difficulty speaking (e.g., stuttering), difficulty with language (e.g., language development disorder), voice problems, or hearing loss. Communication problems interfere with participation in daily life. We call this communicative participation: taking part in life situations in which knowledge, information and ideas are exchanged (Eadie et al., 2006).

Speech and language therapists (SLTs) provide treatment for children and adolescents with communication problems. They provide disorder-focused therapy, aimed at improving communication skills, or functional therapy, aimed at teaching children and adolescents how to handle their communication problems. In both forms of therapy, the same outcome is important: it should improve the client’s communicative participation.

Communicative participation is seen as the most important outcome of speech and language therapy. However, there is a lack of measurement tools that actually measure communicative participation. Within our field, we are not able to measure the most important outcome of our treatment. With this research, we answer a question posed by SLTs themselves: how can we measure our clients’ communicative participation in a constructive manner?

In our research project, we aim to develop an IRT-based item bank for measuring communicative participation in children, adolescents and young adults with communication disorders. In the first phase of the project, we aimed to find relevant items to be included in the item bank. We did this through a literature review of existing instruments and a concept elicitation study with representatives from the target population. In the literature review, we found 145 items measuring communicative participation. In the concept elicitation study, participants with various communication disorders mentioned a total of 232 situations in which they were required to communicate. The items found in the literature were for the most part about child-parent interaction or child-peer interaction. Few items were about participation in social contexts, such as school or sports. The situations mentioned in the concept elicitation study were more about participation in social contexts, such as school, internships, (side)jobs or leisure. This concept elicitation study has ensured that we will generate a relevant and comprehensive item pool.

I expect that two main aspects may resonate with the ISOQOL community. First, this research underscores that the patient’s voice needs to be included in the development of PROMs. Without the input of the patients participating in the concept elicitation study (and also in subsequent studies that are currently ongoing), we would not have been able to make our PROM relevant and comprehensive for our patient population.

Second, our research included voices of communication vulnerable people. We exclusively focused on people with communication disorders, but communication vulnerable people also include people with low literacy, cultural differences, and other experiences. As a part of a general population, communication vulnerable people are part of every target population for whom researchers develop PROMs. This group of people is often excluded from research, and PROMs are often not accessible to them. By sharing the experiences of our research, we want to provide an example of how communication vulnerable people can be included in PROM research and how PROMs can be made more communication-friendly.

In the upcoming years, our research will focus on examining the measurement properties of the new item bank. In addition, we will further develop our communication-friendly research methods and a communication-friendly version of our item bank, which will enable people with severe language difficulties to self-report on their communicative participation.

It is our hope to create a future where PROMs are more easily accessible to those who experience communication difficulties. It is important for every patient’s voice to be heard.

Abstract will be presented in Oral Session 206 on Friday, 20 October, 3:40 pm – 5:10 pm. 

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

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