Caregiver and patient reported outcomes after repair of cleft lip and/or palate in the Philippines

Cleft Palate Craniofac J. 2008 Mar;45(2):163-71. doi: 10.1597/06-230.1.

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.

MeSH terms

  • Adolescent
  • Adult
  • Attitude to Health*
  • Caregivers / psychology*
  • Child
  • Child, Preschool
  • Cleft Lip / psychology
  • Cleft Lip / surgery*
  • Cleft Palate / psychology
  • Cleft Palate / surgery*
  • Eating / physiology
  • Esthetics, Dental
  • Family / psychology
  • Feasibility Studies
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Medical Missions
  • Patient Satisfaction*
  • Philippines
  • Prospective Studies
  • Social Adjustment
  • Speech / physiology
  • Treatment Outcome