The impact of cleft lip and/or palate on parental quality of life : a pilot study

Background: Cleft lip and/or palate (CL/CP/CLP) is one of the most common congenital anomalies. Children may suffer from a variety of health problems including difficulties with feeding and speech, middle ear problems, hearing loss and associated psychosocial concerns. The extent of impact of this disorder on the parents, however, has not yet been thoroughly evaluated. This pilot study was performed to evaluate the impact of having a child with CL/CP/CLP on the parents' quality of life (QoL) and family functioning and to compare between cleft subgroups. Methods: Forty-five parents with children aged 6 months to 6 years with CL/CP/CLP, followed by the multidisciplinary orofacial cleft team of Ghent University Hospital, completed following standardized questionnaires: Impact on Family Scale (IOES), Family Impact Scale (FIS) and Care-Related Quality of Life Instrument (CarerQoL). Subgroups were compared with diverse unpaired statistical tests. Results: Younger children (6m-2y) with CL/CP/CLP entail more impact on parental QoL compared to children aged 2-4y old (p = 0.04, epsilon(2)=0.15/p = 0.02, epsilon(2)=0.17/p = 0.02, epsilon(2)= 0.17). Families from children with a syndromic cleft also encounter more impact (p = 0.04, r = 0.32 /p = 0.01, r = 0.37 /p = 0.008, r = 0.40/p = 0.003, r = 0.45). Prenatal orofacial cleft diagnosis is associated with a higher reporting of family conflicts (p = 0.04, r = 0.32). In case of non-syndromic clefts, families having children with CLP report more family conflicts compared to CL or CP (p = 0.02, epsilon(2)= 0.46). Parental education and number of children within the household showed no significant impact on parental QoL. Conclusion: This cross-sectional study confirms that having a child with CL/CP/CLP impacts the parental QoL. This study was performed as a pilot-study for larger multicentre studies, future development of effective screening tools and identification of subgroups at risk. Long-term multidisciplinary follow-up should involve family-centred support