The Psychosocial Patient-Reported Outcomes of End of Pathway Cleft Surgery: A Systematic Review

Abstract

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.

Zebrafish Models of Craniofacial Malformations: Interactions of Environmental Factors

“…It affects the face uni-or bilaterally, as well as the hard and soft palate (Dixon et al, 2011). Extensive reconstructive surgery and dental treatment are often required until adulthood for the various forms of CLP (Acum et al, 2020;Martin et al, 2020). After surgery, CLP patients may still experience difficulties with speaking and hearing, leading to psychosocial problems (Martin et al, 2020).…”

Comparative evaluation of nasolabial appearance of unilateral cleft lip and palate patients by professional, patient and layperson using 2 aesthetic scoring systems: A cross sectional study

“…With the changing culture of healthcare and growing emphasis on the patient perspective, it becomes more essential to objectively assess and quantify cleft surgery outcomes from the viewpoint of the patient along-with the clinician. 15 This would greatly help in building stronger and effective communication between them, allowing better understanding of the patient expectations, thus making feasible decisions. photographic views (frontal and profile) were used to assess nasolabial aesthetics in the patient cohort.…”

“…Thus, according to literature, even the slightest improvement in aesthetics is extremely significant for the patient. With the changing culture of healthcare and growing emphasis on the patient perspective, it becomes more essential to objectively assess and quantify cleft surgery outcomes from the viewpoint of the patient along‐with the clinician 15 . This would greatly help in building stronger and effective communication between them, allowing better understanding of the patient expectations, thus making feasible decisions.…”

Self-Consciousness of Appearance in Chinese Patients With Cleft Lip: Validation of the Chinese Derriford Appearance Scale 59 (DAS 59) Instrument

“…The primary objective of CL/P treatment is to improve appearance and function to get better QoL. To decide if CL/P therapy achieves its proposed target, investigations more often depend on estimating and depicting the professionally reported results, for example, the clinical marks of surgical competence or aesthetics dependent on expert perception ( 8 , 9 ). Estimating clinician-reported results is critical to set up the clinical adequacy of treatment and guarantee beneficial practice.…”