In their own words: developing PROMs measuring communicative participation in children, adolescents, and young adults with communication problems

Children, adolescents, and young adults with communication disorders often experience barriers in their daily participation. Participation in situations where communication is required is referred to as communicative participation. It is defined as “taking part in life situations in which knowledge, information, ideas, or feelings are exchanged through speaking, listening, reading, writing, or nonverbal communication” (Eadie et al., 2006). Communicative participation is considered the primary goal of speech and language therapy, yet no instruments currently exist that allow children to self-report their communicative participation. This dissertation describes the development of MyCommunication-Youth, a new patient-reported outcome measure (PROM) designed to assess communicative participation in children, adolescents, and young adults with communication disorders. The PROM is based on an item bank: a large collection of questions that all measure the same construct. Using item response theory (IRT), items can be ordered by difficulty and evaluated for how well they distinguish between individuals with more or fewer problems. This approach ensures that each respondent receives more relevant questions and needs to answer fewer of them. The development process followed COSMIN guidelines and consisted of several steps. The first three chapters focused on gathering as many relevant items as possible. A systematic literature review (Chapter 2) identified 29 existing instruments, from which 145 items were selected. None of these instruments, however, specifically targeted communicative participation. Chapter 3 reports on a qualitative study involving 12 adolescents and young adults (aged 13–29) with diverse communication disorders. Through diaries and interviews, they described 234 situations in which they experienced communicative participation or encountered barriers. These situations resulted in 37 concepts, categorized into six domains: person, topic, location, manner, moment, pace, and mode. Many of these situations were not represented in existing instruments. A comparable study with 13 children (aged 5–11) is presented in Chapter 4. Again, concepts were collected within the same six domains. Children aged 8 and older were generally able to reflect on their experiences, whereas younger children and children with developmental language disorder (DLD) found this more challenging. Based on these insights, draft questionnaires were developed for three age groups. Chapter 5 describes the further development and refinement of MyCommunication-Youth through cognitive debriefing with 33 participants (aged 5–29). Their feedback on comprehensibility, relevance, and comprehensiveness led to several revisions. A new group of 27 participants and eight professionals then evaluated the content validity. The instrument was judged to be comprehensible, comprehensive, and relevant. Chapter 6 presents the psychometric analyses of the child version. The final item bank consists of 32 items, from which two short forms were created: a general version and a school-specific version. Chapter 7 provides preliminary analyses of the adolescent and young adult versions. Due to limited sample sizes, full psychometric testing was not yet possible, but provisional 15‑item short forms were developed for both groups.