Body disfigurement and the quality of life of adolescents with pectus excavatum: Effects of the Nuss procedure

Jillian Roberts, Ph. D., Sheryl MacMath, M.A., Margot English, M.A., Joan Martin, Ph.D., Al Hayashi, M.D., M.Sc. FRCS(C), and David L. Sigalet, M.D.,  Ph.D. FRCS(C).

Acknowledgements

The authors gratefully acknowledge funding provided by the Canadian Institute of Health Research, as well as Kendra Massie and Lia Van Winkle for their assistance with data collection and Gail Wright-Wilson for help in organizing patient interviews.

Abstract

This article takes a comprehensive look at the effects of pectus excavatum, a congenital deformity with psychosocial and physical ramifications, and the Nuss procedure on the quality of life of adolescents. The Nuss procedure is a minimally invasive corrective surgery. Twenty-five participants from Calgary, Alberta were interviewed (10 adolescents between the ages of 13 and 16, 8 mothers, and 7 fathers) regarding their experiences with pectus excavatum before, during recovery, and after surgery. We gathered qualitative data on four areas of quality of life: well-being, social belonging, satisfaction, and empowerment. Pectus excavatum had a negative effect on quality of life, with participants demonstrating decreased self-confidence, increased feelings of self-consciousness, and a variety of avoidance and concealment behaviors. After the Nuss procedure, all areas of adolescent quality of life improved. Adolescent and parent recommendations are provided. We also explore theoretical implications in relation to body disfigurement research, quality of life, and pectus excavatum. Finally, educational implications are included.

Key Words:       Pectus excavatum, Nuss procedure, quality of life, body disfigurement