Summary
Objective
Cleft lip and/or palate (CLP) is the most common congenital craniofacial anomaly.
As a first step toward developing a quality of life (QOL) questionnaire for CLP patients,
our team conducted a systematic literature review to identify studies that measured
child- or proxy-reported outcomes of CLP.
Design
PUBMED, CINAHL, EMBASE and PsycINFO were searched from their inception to July 2010
to identify studies that measured health-related concepts in CLP patients. Abstract
and title screening was performed by two screeners. Full texts of all potentially
relevant papers were obtained and examined by two reviewers. We identified publications
that measured health concepts and categorized them to form a preliminary conceptual
framework of CLP QOL issues.
Results
A total of 4594 publications were identified. Twenty-six studies met our inclusion
criteria. Research involved CLP patients living in nine countries with sample sizes
ranging from 23 to 661. Health concepts were measured using 29 different questionnaires.
No patient-reported outcome (PRO) instrument measuring QOL concerns of CLP patients
currently exists. CLP-specific health concepts measured to date were categorized into
a preliminary conceptual QOL framework with the following categories: physical, psychological
and social health.
Conclusions
Our review has helped to identify areas of health that have been well researched using
either a patient or proxy patient-reported outcome instrument (e.g., self-concept;
behavior) and areas where more research is required.
Keywords
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Plastic, Reconstructive & Aesthetic SurgeryAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Cleft lip and palate: understanding genetic and environmental influences.Nat Rev Genet. 2011; 12: 167-178
- Patient-reported outcome measures in plastic surgery: use and interpretation in evidence based medicine.Plast Reconstr Surg. 2011; 127: 1361-1367
- Priorities for future public health research in orofacial clefts.Cleft Palate Craniofac J. 2007; 44: 351-357
- Clinical research in pediatric plastic surgery and systematic review of quality of life questionnaires.Clin Plast Surg. 2008; 35: 251-267
- The science behind quality-of-life measurement: a primer for plastic surgeons.Plast Reconstr Surg. 2009; 123: 98E-106E
- Patient reported outcome measures: use in medical product development to support labeling claims.(Available at:)2009
- The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration.PLoS Med. 2009; 6: e1000100
- Coping with a cleft: psychosocial adjustment of adolescents with a cleft lip and palate and their parents.Cleft Palate Craniofac J. 2009; 46: 436-443
- Social function in boys with cleft lip and palate: relationship to ventral frontal cortex morphology.Behav Brain Res. 2007; 181: 224-231
- Psychosocial functioning and sleep patterns in children and adolescents with cleft lip and palate (CLP) compared with healthy controls.Cleft Palate Craniofac J. 2009; 46: 124-135
- Self-concept of early primary school age children with visible or invisible defects.Cleft Palate J. 1989; 26: 114-117
- Psychological profile of Chinese with cleft lip and palate deformities.Cleft Palate Craniofac J. 2007; 44: 79-86
- Health-related quality of life among preadolescent children with oral clefts: the mother’s perspective.Pediatrics. 2007; 120: e283-e290
- Social experience in 10-year-old children born with a cleft: exploring psychosocial resilience.Cleft Palate Craniofac J. 2009; 46: 65-74
- Peer harassment and satisfaction with appearance in children with and without a facial difference.Body Image. 2010; 7: 97-105
- The self-concept of adolescents with cleft lip and palate: a pilot study using a multidimensional/hierarchical measurement instrument.Int J Paediatr Dent. 2006; 16: 335-341
- Self-reports of psychosocial functioning among children and young adults with cleft lip and palate.Cleft Palate Craniofac J. 2006; 43: 598-605
- Parent reports of the psychosocial functioning of children with cleft lip and/or palate.Cleft Palate Craniofac J. 2007; 44: 304-311
- Self-concept of primary-school-age children with cleft lip, cleft palate, or both.Cleft Palate J. 1986; 23: 24-27
- Quality of life and family functioning in children with non-syndromic orofacial clefts at preschool ages.J Craniofac Surg. 2008; 19: 580-587
- Quality of life in school-age children with orofacial clefts and their families.J Craniofac Surg. 2009; 20: 2061-2066
- Self-concept of children and adolescents with cleft lip and/or palate.Cleft Palate Craniofac J. 1991; 28: 347-353
- Different cleft conditions, facial appearance, and speech: relationship to psychological variables.Cleft Palate Craniofac J. 2001; 38: 68-75
- The effect of cleft lip on socio-emotional functioning in school-aged children.J Child Psychol Psychiatr. 2010; 51: 94-103
- Self-concept and introversion in adolescents with cleft lip and palate.Scand J Plast Reconstr Surg Hand. 2002; 36: 24-27
- Adolescents with cleft lip and palate: self-perceptions of appearance and behavior related to personality adjustment.Cleft Palate J. 1985; 22: 93-96
- Facial and speech relationships to behavior of children with clefts across three age levels.Cleft Palate Craniofac J. 1997; 34: 390-395
- Brief report: cleft lip and palate: longitudinal behavior and relationships of cleft conditions to behavior and achievement.J Pediatr Psychol. 1997; 22: 487-494
- An evaluation of Health-Related Quality of Life (HRQoL) in a group of 4–7 year-old children with cleft lip and palate.J Orofac Orthop. 2009; 70: 274-284
- The behavior of the child with cleft lip and palate as perceived by parents and teachers.Cleft Palate J. 1984; 21: 224-228
- Self-concept and satisfaction with physical appearance in youth with and without oral clefts.Child Health Care. 2003; 32: 81-101
- Cleft type, age, and sex differences in teen-agers’ ratings of their own behavior, self-esteem, and attitude toward clefting.Rehabil Lit. 1984; : 177-179
- Health-related quality of life in children with craniofacial anomalies.Plast Reconstr Surg. 2002; 110: 409-414
- Approaches to craniofacial-specific quality of life assessment in adolescents.Cleft Palate Craniofac J. 2005; 42: 19-24
- Measuring the quality of life of youth with facial differences.Cleft Palate Craniofac J. 2007; 44: 538-547
- Short forms of the Child Perceptions Questionnaire for 11–14-year-old children (CPQ 11–14): development and initial evaluation.Health Qual Life Outcomes. 2006; 4: 4
- Reliability and convergent and discriminant validity of the child oral health impact profile (COHIP Child’s version).Comm Dent Oral Epidemiol. 2007; 35: 20-30
- Validation of a pediatric voice quality-of-life instrument.Arch Otolaryngol Head Neck Surg. 2002; 128: 919-922
- Validation of the pediatric voice-related quality-of-life survey.Arch Otolaryngol Head Neck Surg. 2006; 132: 717-720
- Stigma experiences in youth with facial differences: a multi-site study of adolescents and their mothers.Corthod Craniofac Res. 2007; 10: 96-103
- Quality of life: how do adolescents with facial differences compare with other adolescents?.Cleft Palate Craniofac J. 2005; 42: 25-32
- Health-related quality of life in youth with epilepsy: theoretical model for clinicians and researchers. Part 1: the role of epilepsy and co-morbidity.Qual Life Res. 2006; 15: 1161-1171
- Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review.Support Care Cancer. 2011; 19: 1275-1287
Klassen A, Goodacre T, Wong K, et al. Understanding quality of life of cleft-lip and/or palate patients. 18th Annual International Society of Quality of Life Research, Denver USA, Oct 26–29 2011.
Article info
Publication history
Published online: November 28, 2011
Accepted:
November 6,
2011
Received:
August 10,
2011
Footnotes
☆Meeting/conference presentations: Findings have been presented at the following: Canadian Society for Epidemiology and Biostatistics National Student Conference in Montreal, Quebec, Nov 2011 and the International Society of Quality of Life Research conference in Denver, Colorado, Oct 2011.
Identification
Copyright
© 2011 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Inc. All rights reserved.
