Capturing Patient Perspectives on Communicative Participation: A new Outcome Measure for Speech and Language Therapy

Abstract

This dissertation presents research into communicative participation, the primary outcome of speech-language therapy for individuals with communication problems. In 2013, the Communicative Participation Item Bank (CPIB; Baylor et al., 2013) was published; a patient-reported outcome measure (PROM) designed to assess communicative participation. Since this instrument was not developed and validated for the entire adult population with communication problems, it was deemed necessary to develop a more comprehensive instrument for the Dutch context. Each study in this dissertation describes a distinct aspect of the instrument’s development. The development was conducted in accordance with the guidelines for the development of measurement instruments as outlined in the COnsensus-based Standards for the selection of health Measurement INstruments (Mokkink et al., 2018; Prinsen et al., 2018). Chapter 2 outlines the theoretical framework of communicative participation, defining it as the overlap of ‘communication’ and ‘participation’. It highlights the importance of integrating items from the ICF domain ‘communication’ with those from other relevant ICF domains to describe communicative participation. To expand the applicability of the CPIB (particularly for individuals with hearing impairments and severe language or cognitive communication disorders) two preparatory studies were conducted to identify additional items. Chapter 3 presents a literature review of PROMs, identifying 391 items across 31 instruments. Chapter 4 describes an interview study with 18 adults with diverse communication problems, resulting in 103 additional items and the identification of 44 key concepts related to communicative participation. These concepts were categorized into six themes: person, location, topic, mode, timing, and pace of communication. These concepts and themes form the foundation of the measurement instrument in development. Although the CPIB served as the starting point for developing a generic PROM for the Dutch context, the addition and reformulation of items led to the creation of a new instrument: MyCommunication-Adults. Chapter 5 outlines its development. After removing duplicates and translating the CPIB, a focus group of professionals selected 242 items for a pilot study. Following this pilot study and a content validity study with adults with communication problems and professionals, 133 items remained in the draft item bank. Chapter 6 describes a psychometric study on the structural validity, construct validity, and reliability of MyCommunication-Adults. Based on data from 500 adults with diverse communication problems, the initial item bank of 133 items was refined to 42 items. From these 42 items, two short forms were developed: a generic version for non-working adults (9 items) and a version for working adults (10 items). Both versions, along with the full item bank, demonstrated strong reliability. The study confirmed that MyCommunication-Adults measures a construct distinct from the PROMIS short form ‘Ability to Participate in Social Roles and Activities’ (Terwee et al., 2019), while aligning closely with the CPIB, supporting its construct validity. This thesis offers (the development of) a measurement instrument that has been tested for validity and reliability, in the form of an item bank and two short forms, which can be used in clinical practice and research to measure communicative participation in adults with communication problems.