Discussion: Measuring Quality of Life in Cleft Lip and Palate Patients Currently Available Patient-Reported Outcomes Measures

T of us whose focus is the surgical correction of cleft lip and palate and its secondary deformities realize that there is a major gap in our knowledge as to the outcome of our efforts. We can review our photographs and report on our assessment of the outcomes, but this is of little consequence other than helping us to feel good about what we are doing. The more important question, however, is whether we are making an impact on the quality of life of the patients we are serving. This question is of little relevance for the infant with cleft lip and palate, as social and functional norms dictate the initial repair. Yet much of the correction of secondary deformities of cleft lip and palate is performed at adolescence and beyond, when patient-reported outcome measures are of greater relevance than practitioner-reported outcome measures. Appearance and function have significant impact on the patient’s quality of life, yet there is a substantial lack of information as to how our health care teams are doing in improving this quality of life. Are we simply subjecting these patients to surgery at the will of their parents and our own image of what we feel they should be? The study by Eckstein and colleagues points out this void in our ability to assess our outcomes and highlights the need to develop methodology by which to address it. Many surgical techniques have been described for cleft patients to address the cleft lip and palate, as well as correction of the nasal deformity. The technique used by different surgeons, however, may depend on a variety of factors, such as personal preference and previous training. With cleft surgery as much an art as a science, results achieved by individual practitioners may vary to a significant degree, even when using the same surgical technique. How then, have we attempted to assess our outcomes to date? It is clear that our assessment has not focused on patient-reported outcome measures. A number of objective measures have been used in an attempt to assess and compare results of cleft surgery. These include the use of cephalometrics to compare the skeletal profile and facial height,1,2 analysis of dental casts to compare dental arch relationships after surgery,3 and clinical photographs with assessment of nasolabial form by different judges using ordinal scales.2 Complicating the ability to assess results from clinical photographs is often the inability to standardize photographs among different photographers. Even with the use of a grid or cephalostat, it was reported that it was not possible to achieve comparable photographs among cleft patients.4 Other techniques described include the use of video recordings to assess nasolabial form5 and three-dimensional laser surface scanning of the face to assess nasal and soft-tissue form.6 Perceptual speech assessment is anacceptedmeans for theobjectiveassessment of speech outcomes following cleft palate repair, and established protocols are in place for further assessment of patients documented to have velopharyngeal incompetence using nasendoscopy and/or videofluoroscopy.7,8 Realizing that our method of assessing the outcomes of cleft lip and palate surgery is practitioner reported, rather than patient reported, makes the article by Eckstein and colleagues all the more relevant. Interestingly, no relationship has been found between objective outcomes used for assessment of cleft surgery and patient or parent satisfaction.9 In addition, a statistically significant discrepancy between psychological outcomes of patients and parents was found in regard to satisfaction with treatment of the lip and teeth in cleft