Defining outcomes: exploring the perspectives of people who use aided augmentative and alternative communication to develop the content for a patient-reported outcome measure

Evaluating clinical interventions is an important component of quality assurance and informs decision making about the funding and commissioning of health and care services. Patient-reported outcome measures (PROMs) are tools that evaluate health interventions from the perspective of people receiving care. There is no validated PROM tool that evaluates the impact of augmentative and alternative communication (AAC) interventions. The current study was designed to understand what outcomes are important to people who use aided AAC. The study aimed to generate measurement items and to confirm the conceptual framework for a PROM for AAC. Seventeen participants aged 14 to 72 who use AAC were recruited. Each participant contributed to a one-to-one interview, informed by a topic guide developed in collaboration with a group of people with experience of using AAC. The research team used framework analysis to map data into an analytic framework informed by previous research. Analysis resulted in the development 33 items within seven domains that constitute the content for a PROM for AAC. The domains were mapped onto two conceptual models: Participation, including the Family of Participation-Related Constructs (fPRC), and the Communication Capability Approach. This research contributes rigorously developed PROM content grounded in the voices of people who use AAC and offers two conceptual frameworks to guide future tool development. It also raises critical questions about the theoretical underpinnings of AAC interventions and the need for outcome measures that reflect the evolving aspirations of users. The findings have implications for clinical practice, service delivery, and the ethical development of person-centred outcome measures in AAC.