Objective: The measurement of health-related quality of life (HRQL) in children presents conceptual and methodological challenges owing to the multidimensionality of the required information and limitations in patient self-report. HRQL results provide a broad measure of treatment impact from the patient and family perspective and are crucial to guiding clinical and policy decisions. The objective of this study was to evaluate how HRQL in children with cochlear implants has been measured in published studies in order to draw conclusions that could inform future investigations of this area of clinical research.
Methods: We searched PubMed, EMBASE, CINAHL, PsychoInfo, and Web of Science databases using a defined search string and hand-searched reference lists of relevant articles and personal files. Retrieved citations were reviewed in two stages, a title and abstract screen followed by review of the full-length article. Inclusion criteria for studies were: (1) original peer-reviewed research article; (2) enrolled subjects <18 years old with cochlear implants; (3) use of a HRQL instrument that incorporated components of physical, mental, and social health; and (4) in English. Data from full-length articles were extracted by a single-investigator.
Results: We retrieved 671 citations with our search strategy, and 10 citations were found to be eligible for inclusion. All studies used a cross-sectional design, and three types of HRQL instruments were used: generic questionnaires, ad hoc instruments designed specifically for the purposes of the study, and the parents views and experiences with pediatric CI questionnaire. Heterogeneity in study design and instruments prevented a quantitative, meta-analysis of the data.
Conclusions: Studies that used well-validated, generic HRQL instruments supported conclusions that were less subject to potential bias from the perspective of the clinician investigator. Most studies did not use well-defined cohorts with respect to age at implantation and duration of implant use, and conclusions in these studies were also subject to potential bias. No well-validated, deafness-specific HRQL instruments are currently available. Future research should be done with existing, generic HRQL instruments and with strict study inclusion criteria. Suggested generic HRQL instruments are discussed.