Health-related quality of life among preadolescent children with oral clefts: The mother's perspective

Pediatrics

Volumn 120, Issue 2, 2007, Pages

  Damiano, Peter C ^a   Tyler, Margaret C ^a   Romitti, Paul A ^a   Momany, Elizabeth T ^a   Jones, Michael P ^a   Canady, John W ^a   Karnell, Michael P ^a   Murray, Jeffrey C ^a,b  

^a UNIVERSITY OF IOWA   (United States)

^b UNIVERSITY OF IOWA   (United States)

Author keywords

Cleft lip; Cleft palate; Health related quality of life; Oral clefts

Indexed keywords

AGE DISTRIBUTION; ARTICLE; CHILD; CLEFT LIP; CLEFT LIP PALATE; CLEFT PALATE; DEMOGRAPHY; FEMALE; HUMAN; MAJOR CLINICAL STUDY; MALE; MATERNAL ATTITUDE; MOTHER; PEDIATRIC QUALITY OF LIFE INVENTORY; PRIORITY JOURNAL; QUALITY OF LIFE; SCORING SYSTEM; SPEECH DISORDER;

EID: 34547660509     PISSN: 00314005     EISSN: 02105721     Source Type: Journal    
DOI: 10.1542/peds.2006-2091     Document Type: Article

References (35)

1. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference. Geneva, Switzerland: World Health Organization; 1948
2. Forrest CB, Simpson L, Clancy C. Child health services research. Challenges and opportunities. JAMA. 1997;277:1787-1793
3. Homer CJ, Kleinman LC, Goldman DA. Improving the quality of care for children in health systems. Health Serv Res. 1998;33:1091-1109
4. McGlynnn EA, Halfon N, Leibowitz A. Assessing the quality of care for children. Prospects under health reform. Arch Pediatr Adolesc Med. 1995;149:359-368
5. Marcusson A, Akerlind I, Paulin G. Quality of life in adults with repaired complete cleft lip and palate. Cleft Palate Craniofac J. 2001;38:379-385
6. Topolski TD, Edwards TC, Patrick DL. Quality of life: how do adolescents with facial differences compare with other adolescents? Cleft Palate Craniofac J. 2005;42:25-32
7. Strauss RP, Fenson C. Experiencing the "Good life": Literary views of craniofacial conditions and quality of life. Cleft Palate Craniofac J. 2005;42:14-18
8. Sinko K, Jagsch R, Prechtl V, Watzinger F, Hollmann K, Baumann A. Evaluation of esthetic, functional, and quality-of-life outcome in adult cleft lip and palate patients. Cleft Palate Craniofac J. 2005;42:355-361
9. Locker D, Jokovic A, Tompson B. Health-related quality of life of children aged 11 to 14 years with orofacial conditions. Cleft Palate Craniofac J. 2005;42:260-266
10. Warschausky S, Kay JB, Buchman S, Halberg A, Berger M. Health-related quality of life in children with craniofacial anomalies. Plast Reconstr Surg. 2002;110:409-404
11. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39:800-812
12. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;3:329-341
13. Varni JW, Seid M, Knight TS, Uzark K, Szer IS. The PedsQL 4.0 Generic Core Scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002;25:175-193
14. Seid M, Varni JW, Kurtin PS. Measuring quality of care for vulnerable children: challenges and conceptualization of a pediatric outcome measure of quality. Am J Med Qual. 2000;15:182-188
15. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126-139
16. Hinds PS, Gattuso JS, Fletcher A, et al. Quality of life as conveyed by pediatric patients with cancer. Qual Life Res. 2004;13:761-772
17. Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL. The PedsQL in type 1 and type 2 diabetes: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Type 1 Diabetes Module. Diabetes Care. 2003;26:631-637
18. Laffel LM, Connell A, Vangsness L, Goebel-Fabbri A, Mansfield A, Anderson BJ. General quality of life in youth with type 1 diabetes: relationship to patient management and diabetes-specific family conflict. Diabetes Care. 2003;26:3067-3073
19. Bastiaansen D, Koot HM, Bongers IL, Varni JW, Verhulst FC. Measuring quality of life in children referred for psychiatric problems: psychometric properties of the PedsQL 4.0 Generic core scales. Qual Life Res. 2004;13:489-495
20. Hallstrand TS, Curtis JR, Aitken ML, Sullivan SD. Quality of life in adolescents with mild asthma. Pediatr Pulmonol. 2003;36:536-543
21. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002;94:2090-2106
22. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum. 2002;46:714-725
23. Sawyer MG, Whitham JN, Roberton DM, Taplin JE, Varni JW, Baghurst PA. The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43:325-330
24. Varni JW, Burwinkle TM, Sherman SA, et al. Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol. 2005;47:592-597
25. Varni JW, Burwinkle TM, Katz ER. The PedsQL in pediatric cancer pain: a prospective longitudinal analysis of pain and emotional distress. J Dev Behav Pediatr. 2004;25:239-246
26. Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory generic core scales and asthma module. J Behav Med. 2004;27:297-318
27. Bethell CD, Read D, Neff J, et al. Comparison of the children with special health care needs screener to the questionnaire for identifying children with chronic conditions: revised. Ambul Pediatr. 2002;2:49-57
28. Millard T, Richman LC. Different cleft conditions, facial appearance, and speech: relationships to psychological variables. Cleft Palate Craniofac J. 2001;38:68-75
29. Broder H, Strauss RP. Self-concept of early primary school children with visible and invisible defects. Cleft Palate J. 1989;26:114-117
30. Nopoulos P, Choe I, Berg S, Van Demark D, Canady J, Richman L. Ventral frontal cortex morphology in adult males with isolated orofacial clefts: relationship to abnormalities in social function. Cleft Palate Craniofac J. 2005;42:138-144
31. Nopoulos P, Berg S, VanDemark D, Richman L, Canady J, Andreasen NC. Cognitive dysfunction in adult males with non-syndromic clefts of the lip and/or palate. Neuropsychologia. 2002;40:2178-2184
32. Christensen K, Juel K, Herskind AM, Murray JC. Long term follow up study of survival associated with cleft lip and palate at birth. BMJ. 2004;328:1405
33. Jugessur A, Murray JC. Orofacial clefting: recent insights into a complex trait. Curr Opin Genet Dev. 2005;15:270-278
34. Vieira AR, Avila JR, Daack-Hirsch S, et al. Medical sequencing of candidate genes for nonsyndromic cleft lip and palate. PLoS Genet. 2005;1(6):e64
35. Wehby GL, Ohsfeldt RL, Murray JC. Health professionals' assessment of health-related quality of life values for oral clefting by age using a visual analogue scale method. Cleft Palate Craniofac J. 2006;43:383-391