Appraising the quality of tools used to record patient-reported outcomes in users of augmentative and alternative communication (AAC): a systematic review

Abstract

PurposePeople who have complex communication needs (CCN), and who use augmentative and alternative communication (AAC) to help them express themselves, can be difficult to engage in decision making about their healthcare. The purpose of this review was to identify what patient-reported outcome measures (PROMs) have been employed with people who use AAC. Of the tools identified, the review aimed to establish what conceptual frameworks were used and how the reports describe completion of the PROM.MethodsA systematic literature review was carried out. A pre-defined set of search terms was entered into five main health and education databases. Titles and abstracts were sifted for relevance. Full text papers were screened against inclusion/exclusion criteria. Data pertaining to the type and nature of the PROM used was extracted. Complementary data sources were analysed to construct a narrative synthesis of the papers identified.ResultsWithin 15 papers that met the review criteria, 25 PROMs were used with people who rely on AAC comprising of 15 separate measures. The conceptual frameworks for 12 of these tools were reported from which 62 items, or concepts being measured, were identified. Following synthesis of these items, 9 conceptual domains and 11 sub-domains were generated. Limited information was available about who completed the PROM nor how much, if any, support they received.ConclusionsNo PROM that has been developed specifically for people who use AAC was identified by this review. Of the tools that have been used with people who use AAC, the concepts measured were broad and varied. The quality of reporting concerning who completed the PROM was limited, undermining the trustworthiness of many of the studies.

State of the Field: The Need for Self‐Report Measures of Health and Quality of Life for People With Intellectual and Developmental Disabilities

“…The limited data collected from people from people with IDD in population health and QoL research have major implications for describing health characteristics and needed supports in this population (Broomfield et al, 2019). We believe that concerns about the reliability and validity of self-report in IDD are also shaped by expectations resulting from the disability paradox and beliefs about the ability of people with IDD to meaningfully report on their health and QoL outcomes.…”

“…Many factors contribute to under-utilization of self-reported health outcomes measures in people with IDD including concerns about (1) the reliability and validity of self-reporting and (2) the burden of participation in this population (Broomfield, Harrop, Judge, Jones, & Sage, 2019;Felce & Perry, 1995;Finlay & Lyons, 2001;Fujiura & the RRTC Expert Panel on Health Measurement, 2012). A common strategy to address these challenges has involved the use of proxy-reporting by supporters to assess the health and QoL of people with IDD (Cella et al, 2012).…”

“…Further, cognitive accessibility and universal design (further elaborated on subsequently) are rarely considered in the development of health and QoL outcome measures, which may artificially limit participation in self-report by the population of respondents with IDD. Assumptions about risk and complexity, rather than feasibility of self-reporting, can shape methodological decisions (Broomfield et al, 2019).…”

Effectiveness and Determinant Variables of Augmentative and Alternative Communication Interventions in Cerebral Palsy Patients with Communication Deficit: a Systematic Review

“…and AAC method (e.g., unaided AAC (body movements, gestures, facial expressions, signs); aided AAC (objects, object symbols, photographs, picture symbol boards and books; communication devices). The formulation of AAC was based on the recently conducted studies and systematic reviews (30,31) . AAC interventions had to be provided individually or in a group and conducted by a speech therapist (or an aligned specialist) working in specialized centers and departments (special education center, a local primary care facilities, schools or preschool centers, office of a speech therapist, a hospital speech therapy department).…”

Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

“… 24 Although an increasing trend towards participatory research designs can be observed, most larger surveys in this area still rely on proxy respondents. One reason for this is likely the fact that there are no tools for patient-reported outcome measures (PROMs) specifically designed for people who use AAC, as Broomfield et al 25 found out in their systematic review. On the one hand, it is extremely important to develop such PROMs for people who use AAC, and on the other hand and regarding the current situation, it is also very important to consider potential factors influencing proxy reporting.…”