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Patient-reported outcomes in Irish adolescents who were born with cleft lip and palate
K Nolan1, Y MacAuley2, S Byrne3
1Department of Plastic & Reconstructive Surgery, Children's Health Ireland at Crumlin, Ireland.
Insights
Patient-reported outcomes (PROs) for adolescents with cleft lip and/or palate show higher satisfaction in younger males and those with isolated cleft palate. This data helps tailor services for better patient care.
Area of Science:
- Craniofacial Surgery
- Patient-Reported Outcomes
- Congenital Conditions
Background:
- Cleft lip and/or palate affects 1:650 live births in Ireland, presenting lifelong challenges.
- This condition impacts airway, feeding, hearing, speech, dental, and facial development.
- While surgical outcomes are audited, patient-reported outcomes (PROs) are increasingly vital.
Purpose of the Study:
- To examine patient-reported outcomes (PROs) in adolescents treated at the Dublin Cleft Centre (DCC).
Main Methods:
- A validated patient-reported outcome measure (PROM), the CLEFT-Q, was used.
- 156 adolescent patients (mean age 13.5 years) prospectively completed the CLEFT-Q.
- Results were analyzed by cleft type and compared to validation data.
Main Results:
- Males reported higher satisfaction across all domains.
- Younger patients reported higher satisfaction with appearance and quality of life.
- Isolated cleft palate patients showed highest satisfaction in school, social, and psychological functioning.
Conclusions:
- PRO data now guides patient and family consultations at the DCC.
- This information aids in targeting service development for specific patient needs.
Background & Purpose:
Cleft Lip and/or Palate, which affects approximately 1:650 live births in Ireland, is a complex congenital condition with lifelong implications. It can affect upper airway function, feeding, hearing, speech development, dental development as well as oral functioning, facial growth and physical appearance. Within cleft surgery, rigorous audit of speech, facial growth and nasolabial aesthetic outcomes is well-established. The importance of including patient-reported outcomes in our routine data-collection is now recognised. The purpose of the current study was to examine patient-reported outcomes (PROs) in a consecutive series of adolescents attending the Dublin Cleft Centre (DCC).
Methods:
A validated patient-reported outcome measure (PROM), the CLEFT-Q, was prospectively administered to 156 patients attending the cleft clinic. Results were analysed according to cleft type and compared to those recorded in the CLEFT-Q validation study.
Results:
Between (February 2020 and March 2022), the CLEFT-Q was administered to 156 patients with a mean age of 13.5 years (range 10-19 years). Males scored higher satisfaction across all subdomains irrespective of age. Satisfaction was higher in younger age groups compared to older patients in both appearance and quality of life outcomes. Patients with isolated cleft palate scored highest for satisfaction in school, social and psychological function.
Conclusions:
PRO data now informs consultations with patients and families at the DCC. This information is also useful in targeting service development to the specific needs of this patient group.
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