A. J. Rios Diaz6, M. S. Ramos6,7, P. T. Vaughn7, A. V. Moscoso10, J. Lam9, E. J. Caterson10 7Harvard Medical School. Brigham And Women’s Hospital,Department Of Surgery,Boston, MA, USA 8Harvard University,School Of Dental Medicine,Boston, MA, USA 9Boston University,School Of Medicine,Boston, MA, USA 10Brigham And Women’s Hospital, Harvard Medical School,Division Of Plastic And Reconstructive Surgery, Department Of Surgery,Boston, MA, USA 6Both Authors Contributed Equally. Harvard Medical School. Brigham And Women’s Hospital,Center for Surgery and Public Health, Department Of Surgery,Boston, MA, USA
Introduction: Cleft lip and palate (CLP) are common congenital craniofacial anomalies. It has been shown that children with this condition are susceptible to discrimination, emotional problems, lower self-esteem and increased anxiety, affecting their lifestyle even after surgical repair. Globally, there is no data on the impact of this condition on Health-Related Quality of Life (HRQoL) in older populations (≥ 25 years). The objective of this study was to assess the HRQoL of unrepaired cases of CLP in a rural population of a lower-middle-income country, where deficiencies in access to care have contributed to an important backlog of adult cases.
Methods: A prospective study conducted in the State of Assam, India from Feb 2013 to May 2014. A total of 147 adult (≥ 18 years) subjects were surveyed, 89 with CLP compared to 58 without CLP. Subjects living throughout the state were recruited at a CLP dedicated hospital in the city of Guwahati (CLP group), and in their home towns (normal group). All subjects completed the World Health Organization HRQoL questionnaire (WHOQOL-BREF) and comparisons between groups were made for each of the four domains (Physical Health, Psychological, Social Relationships and Environment) of the instrument (scoring range 21-100). Descriptive statistics, independent sample t-tests, Pearson's chi-square test, and general lineal models controlling for age, gender, education level, literacy and occupation were used to analyze the data with a significance threshold set at p<0.05.
Results: CLP and normal groups were similar in age (median age 30 vs. 30.5; p=0.754), gender (females 49.4% vs. 43.1%; p=0.452), marital status (married/living as married 53.4% vs. 60.3%; p=0.476) religion (Hindu 76.2% vs. 87.8%; p=0.619), annual income (60,000 vs. 72,000 Indian Rupees; p=0.82) and number of people per household (median 5 vs. 5; p= 0.654). Conversely, the cleft group had significantly higher proportion of illiteracy (55.1% vs. 14.3%; p<0.001), no education (51.1% vs. 10.3%; p<0.001) and hand-laborer occupation (74.7% vs. 38.6% farmer/labor industry; p<0.001). Adjusted models revealed a significantly lower mean difference for the Environment domain [5.24 (95% Confidence Interval 0.97-9.51; p=0.016)], and no significant difference for the other domains.
Conclusions: Environmental consequences of unrepaired CLP on HRQoL are present even after childhood. Some of these include financial resources, access/quality to health and social care, participation in recreational/leisure activities, opportunities for acquiring information and skills, physical and home environment, physical safety and security. Given the life long deleterious consequences of living with an unrepaired CLP, more financial resources need to be allocated to understand and treat the backlog of adult CLP cases. Using CLP-tailored instruments instead of generic ones may increase the sensitivity of capturing additional impact of unrepaired CLP on HRQoL.