Neumann, S.*, Quinting, J.* et al. (2019). Quality of life in adults with neurogenic speech-language-communication difficulties: A systematic review of existing measures. Journal of Communication Disorders, 79, 24-45. (*equally contributed)
Introduction: Quality of life (QoL) has become widely accepted as a concept in clinical assessment of speech, language or communication difficulties. Since difficulties with speech, language or communication have an effect on QoL, the extent to which communication-related QoL (CrQoL) is represented in measures applied in speech-language research becomes an important question.
Purpose: To conduct a systematic review analyzing the use of QoL measures in research involving adults diagnosed with adult-onset neurogenic speech-language-communication difficulties (NSLCD).
Method: Selected medical and psychological databases (e.g. Medline, EMBASE, CINAHL) were searched to identify relevant studies. Studies were eligible for review if they met the following criteria: (1) the language of publication was English, (2) empirical data were reported, (3) the diagnosis of NSLCD was confirmed by a speech-language pathologist or through an assessment, and (4) at least one quality of life measure was used. There was no restriction on publication date. A standardized data extraction form was used to analyze information about the methodological details of each selected study.
Results: 103 studies met the inclusion criteria. The sub-populations addressed covered a wide range of NSLCD, including aphasia, dysarthria, and voice and cognitive communication disorders. Moreover, QoL assessment showed a great deal of heterogeneity, with 39 different QoL measures used, including 13 generic measures, 25 condition-specific measures and a visual analog scale. Communication-related items were present in only 19 of the QoL measures, and only four QoL measures that explicitly measure CrQoL were identified.
Conclusion: A range of different QoL measures have been used. Consensus on a preferred methodology for QoL measurement in NSLCD would facilitate comparability across studies. Future studies might investigate CrQoL more intensively in people with NSLCD.
Keywords: neurogenic speech-language-communication difficulties, adult, quality of life, measure, systematic review