Measuring quality of life in children with speech and language difficulties: a systematic review of existing approaches

Abstract

Background Children's and adolescent's speech and language difficulties (SaLD) can affect various domains of quality of life (QoL), and speech and language therapy interventions are critical to improving QoL. Systematically measuring QoL outcomes in this population is highly complex due to factors such as heterogeneity in impairments and differing targets during intervention. However, measurements of QoL are increasingly required by healthcare commissioners and policy‐makers to inform resource allocation. Aims To review the use of QoL measures in research involving children (age ≤ 18 years) with SaLD. Methods & Procedures A systematic review was undertaken. A systematic search across various databases was performed. Information on the methodological details of each relevant study, along with descriptions of the QoL measures employed, were extracted into standardized data extraction forms. Findings were discussed in a narrative synthesis. Outcomes & Results Twenty‐one relevant studies were identified that deal with a range of subpopulations of children with SaLD. For the most part, generic QoL measures were used, although there was little convergence on the type of QoL measures employed throughout the literature. Five studies utilized preference‐based QoL measures, including the 16D/17D, HUI3, EQ‐5D and QWB‐SA. Of these measures, the HUI3 demonstrated the most promising discriminant validity, although the preference weights for this measure were generated with adults. Conclusions & Implications QoL among children with SaLD is not yet being captured in a systematic way. The HUI3 measure appears to show some promise for generating relevant preference‐based QoL estimates, although further testing of the measure is required.

Quality of life in children with developmental language disorder

“…In summary, studies have used different methods, measurement tools and raters (i.e., self or parent report) to determine QoL in children with DLD. In the only systematic review to consider measurement of QoL in children with speech and/or language difficulties, aged from birth to 18 years, Gomersall et al (2015) concluded that there had not been a consistent or systematic approach to capture QoL in this group, as no DLD-specific measurement exists. Studies had predominantly used generic, rather than disorder-specific measures, with variability in the domains reported.…”

Well-Being and Resilience in Children With Speech and Language Disorders

“…For example, the theme of relaxation strategies emerged in the children's data but not in the data generated with parents and professionals. Well-being is often measured using quality of life instruments which measure constructs such as physical, psychological, and social functioning (Gomersall et al, 2015). There is evidence to suggest that children with speech and language disorder may be at risk in relation to well-being in psychological and social domains as measured on these instruments (Dockrell, Lindsay, Roulstone, & Law, 2014;Feeney et al, 2012).…”

“…This absence of the children's voice is reflected in the fact that many quality of life measures use parent-proxy reports (Feeney et al, 2012). Although some researchers report WELL-BEING AND RESILIENCE 9 similarities across child self-report measures and parent-proxy report measures of quality of life in children with SLI (Kristy & Watter, 2015), proxy reports can be problematic because of differences between parental and children's perspectives (Gomersall et al, 2015). Therefore, Goldbart and Marshall (2011) argue that interpretations of children's feelings and views by proxies need to be validated.…”

Health-related quality of life from the perspective of children with severe specific language impairment

“…A recent review explored the literature to identify the measures used for children with speech and language disorders [ 15 ]. Out of the four measures identified, three of these would not have been useful for the current study cohort, as two were designed for adult use, while another was for children younger than 6 years.…”