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Quality of life and patient satisfaction in adults treated for a cleft lip and palate: A qualitative analysis

Kappen, Isabelle F.P.M.; Bittermann, Gerhard K.P.; Stock, Nicola Marie; Mink van der Molen, Aebele B.; Breugem, Corstiaan C.; Swanenburg de Veye, Henriette F.N.


Isabelle F.P.M. Kappen

Gerhard K.P. Bittermann

Nicola Stock
Occasional Associate Lecturer - HAS - HSS

Aebele B. Mink van der Molen

Corstiaan C. Breugem

Henriette F.N. Swanenburg de Veye


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 (Hospital). Semi-structured interviews were performed.

Patients: 22 patients aged 17 years and older were asked to share 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: namely 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.


Kappen, I. F., Bittermann, G. K., Stock, N. M., Mink van der Molen, A. B., Breugem, C. C., & Swanenburg de Veye, H. F. (2019). Quality of life and patient satisfaction in adults treated for a cleft lip and palate: A qualitative analysis. Cleft Palate-Craniofacial Journal, 56(9), 1171-1180.

Journal Article Type Article
Acceptance Date Feb 25, 2019
Online Publication Date Apr 24, 2019
Publication Date Oct 1, 2019
Deposit Date Feb 26, 2019
Publicly Available Date Feb 26, 2019
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 56
Issue 9
Pages 1171-1180
Keywords quality of life, patient satisfaction; cleft lip and palate, adult, qualitative, treatment
Public URL
Publisher URL
Additional Information Additional Information : © 2019. Reprinted by permission of SAGE Publications


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