Caregiver and Patient Reported Outcomes after Repair of Cleft Lip and/or Palate in the Philippines

Abstract

Objectives: To establish the feasibility of conducting outcomes research among patients treated during a medical mission and to identify the salient outcomes for patients and caregivers in one region of the Philippines. Design And Setting: Prospective structured interview conducted in or near participants’ homes on the island of Cebu, Philippines. Participants: Individuals who had surgery at least 6 months earlier within the study region were eligible. Recipients of surgery were located from surgical records and by word of mouth. Main Outcome Measures: (1) Proportion of individuals located. (2) Primary outcomes of oral cleft repair identified for the sample. Results: Of 99 people on a surgical list, 52 (53%) were located, eight were excluded (ineligible, unavailable, or inaccessible), and 44 agreed to participate in the study. Ten participants were identified via word of mouth. Seventy-five interviews were conducted (21 caregiver–patient pairs, one adolescent, and 32 caregivers of a child <7 years). Nearly all participants (99%) would encourage others to pursue surgery. Open-ended questions were coded to identify primary outcomes: improved speech (52%), improved eating (25%), social benefits (14%), and improved appearance (6%). Caregivers (50%) and patients (68%) reported that improved speech was the most important change after surgery. Conclusions: Patients and caregivers ascribe positive changes related to cleft surgery. Outcomes research requires cooperation with local professionals who can communicate effectively. These data serve to demonstrate feasibility and as a model for future studies of treatment outcomes in follow-up to international medical missions.