OBJECTIVE: To identify and review the literature on the psychosocial patient-reported outcomes (PROs) of surgery at the end of the cleft treatment pathway.
DESIGN: A systematic literature search was performed using electronic databases (Medline, PubMed, EMBASE, PsycInfo, Web of Science, and Science Direct) from database inception to September 2017, to identify studies measuring and reporting the psychosocial PROs of end of pathway cleft surgery.
RESULTS: Of 263 identified papers, 22 studies were eligible for inclusion. Apart from one randomized controlled study, studies were largely observational and adopted a cross-sectional or retrospective design. The majority (n = 16) were small-scale studies. The methodological quality was variable in terms of what, how, and when psychosocial outcomes were measured and reported. None of the studies utilized a psychosocial PRO measure validated in the cleft population, and few studies measured outcomes prospectively. A high proportion of studies utilized bespoke measures of patient satisfaction. Taken together, findings from the included studies are tentative but seem to suggest patients derive some benefit from undergoing end of pathway cleft surgery, in terms of increased satisfaction, quality of life, social interactions, and decreased appearance-related distress.
CONCLUSIONS: Due to methodological challenges and the heterogeneity of what, how, and when outcomes are measured and currently reported, it is difficult to determine the psychosocial PROs of end of pathway cleft surgeries. Consequently, this review advocates the conduct of well-designed, longitudinal studies using cleft-sensitive tool/s to capture the psychosocial PROs of end of pathway cleft surgery at various time points.
- patient-reported outcomes
- quality of life