Piloting Patient Reported Outcome Measures in Cleft Lip and Palate Services in Aotearoa New Zealand.

Abstract

ObjectiveStandardized patient-reported outcome measures (PROMs) are rarely used in cleft lip and palate (CL/P) care within New Zealand (NZ). This pilot study sought to obtain a baseline of patient-reported outcomes in NZ and evaluate clinicians' experiences of implementing PROMs into CL/P services.DesignA mixed methods cross-sectional design using CLEFT-Q scales. Data were compared to published CL/P CLEFT-Q norms using t-tests, and within-group differences were investigated. Qualitative interviews were analyzed using codebook thematic analysis.SettingFive CL/P teams in Aotearoa New Zealand.ParticipantsPatients aged 12+ years (n = 101) were recruited through the five Health NZ CL/P teams between April 2023-March 2024. Five CL/P team members responsible for recruitment participated in an interview at the conclusion of the trial.ResultsCompared with normative data, patients reported more favorable outcomes on speech distress and school function, and poorer psychological function. Speech and social function scores were aligned with CL/P norms. Patients aged 18+ reported the lowest psychological functioning and females reported the lowest social functioning. Clinicians recognized the value of PROMs, yet highlighted concerns about insufficient resourcing to administer, review, and provide follow-up.ConclusionsPsychological function is indicated as an area of concern, particularly for adults with CL/P. Routine use of PROMs would evaluate change in measures of function over time and enhance patient-centered holistic care. Greater personnel and IT resourcing would facilitate routine implementation of PROMs in CL/P teams.