Roshan Peroz: Long-term Outcomes in Unilateral Cleft Lip and Palate Patients; Functional, Aesthetic, and Patient-reported Perspectives

Abstract

This thesis evaluated long-term outcomes for adults with UCLP treated with Skoog's lip repair, using complementary quantitative and qualitative methods across five papers.

Paper I examined whether objective nasal function measures (acoustic rhinometry and rhinomanometry) correlated with self-reported symptoms and clinical findings. Smaller anterior nasal cavity area/volume on the operated side was linked to a greater desire to improve nasal function and more frequent reported obstruction. Greater septal deviation was associated with a more affected posterior nasal cavity, but not with higher airflow resistance.

In Paper II, adults with UCLP reported significantly lower satisfaction with lip appearance than non-cleft controls, and also expressed a higher desire to change their appearance. Secondary lip revisions correlated with a greater desire to change lip appearance, but not with satisfaction itself.

Findings in Paper III showed that all panels rated lip appearance in UCLP patients as worse than controls. Professionals gave the most favorable ratings, followed by the CLP panel, while the lay panel was most critical. Intra-rater agreement was moderate to good for the professional and lay panels but poor for the CLP panel; inter-rater agreement was generally poor. No panel's ratings correlated with self-assessments.

In Paper IV, median lip asymmetry was 18%, calculated using SymNose. Intra-rater agreement ranged from good to excellent, while inter-rater agreement was moderate. Asymmetry measurements did not correlate with panel ratings or self-assessments.

Paper V was a qualitative study based on semi-structured interviews with twelve individuals, at a mean follow-up of approximately 49 years. Three themes were identified. (1) Experiences of living with an altered appearance: appearance perception ranged from positive and accepting to persistent dissatisfaction, with acceptance coming gradually over time even as awareness of appearance persisted throughout life. (2) Impact on self-esteem and social interactions: bullying was predominantly verbal and directed at facial appearance during school years, with consequences enduring into adulthood. Supportive parenting and loyal peer networks emerged as key protective factors. (3) Experiences of healthcare and support: experiences were mixed, with gratitude for staff warmth and clinical skill, but also unmet surgical expectations, gaps in psychosocial support, inadequate communication, and insufficient information.