Quality of Life and Patient Satisfaction in Adults Treated for a Cleft Lip and Palate: A Qualitative Analysis

Abstract

Objective: Long-term outcomes of patients born with a cleft lip and palate (CLP) are scarcely investigated. Yet, this patient group is of particular interest, as they can provide a valuable retrospective view upon their treatment experiences and psychological adjustment. Qualitative accounts may be especially useful in understanding the patient journey. Design: The present study set out to evaluate quality of life and satisfaction with treatment in adult patients previously treated for CLP at the Wilhelmina Children’s Hospital. Semistructured interviews were performed. Patients: A total of 22 patients aged 17 to 35 years (mean: 25 years) were interviewed about their experiences of growing up with CLP and of the treatment they received. Interviews were audio-recorded and factors thought to influence psychological adjustment were identified. Results: Four main themes were identified: background factors, support systems, treatment factors, and coping/internal factors. Each theme was described with illustrative quotes. Conclusion: This study underlines that psychological adjustment can fluctuate over time and greatly differs between individuals, even during adulthood. Psychological support should therefore be available beyond the finalization of the treatment course. Furthermore, the majority of participants stated they had wanted more psychological support as a child to facilitate resilience and to help them cope with challenges.