Implications of Untreated Cleft Palate in the Developing World: Adaptation of an Outcome Measure

To identify the implications of living with untreated cleft palate and develop an outcome measure which reflects the broad impact of surgery but is sensitive to the physical impact, speech changes, and psychosocial implications of late intervention. Design, Participants, Setting: Focus groups and individual interviews were used to gather information on the implications of living with untreated cleft palate and the impact of subsequent surgery. Participants included 11 individuals attending a cleft department in India whose cleft had persisted into adolescence or adulthood, as well as 16 of their family members. The findings were used to assess whether the Therapy Outcome Measure (TOM) could capture the implications of untreated cleft palate and the impact of surgery beyond that of speech alone.

The findings indicated that the implications of living with untreated cleft palate revolved around difficulties with communication, reduced autonomy, and nasal regurgitation. These issues are encapsulated within the third and fourth domains of the TOM, but there is a need for an adapted version (TOM-clp) to use in the developing world, incorporating areas specific to cleft palate.

The TOM has potential as a global tool for measuring the broad impact, including the psychosocial benefit, from attending to untreated cleft palate.