Are we helping children? Outcome assessments in craniofacial care

Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality

Volumn , Issue , 2006, Pages 141-154

  Mouradian, Wendy E ^a   Edwards, Todd C ^a   Topolski, Tari D ^a   Rumsey, Nichola ^a   Patrick, Donald L ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84896758504     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (57)

1. Agency for Health Research and Quality. 2004. U.S. Preventive Services Task Force, Clinical Pocket Guides to Clinical Preventive Services. Available at www.ahrq.gov/clinic/uspstfix .htm, accessed August 22, 2005.
2. American Cleft Palate-Craniofacial Association. 1993. Parameters for the evaluation and treatment of patients with cleft lip/palate and other craniofacial anomalies. Cleft Palate-Craniofacial Journal 30 (suppl. 1):S1-16.
3. Bullinger, M., and U. Ravens-Sieberer. 1995. General principles, methods and areas of applica tion of quality of life research in children. Praxis der Kinderpsychologie und Kinderpsychiatrie 44:391-99.
4. Changing Faces. 2004. www.changingfaces.co.uk/default.html, accessed August 22, 2005.
5. Cicchetti,D., and K. Schneider-Rosen. 1984. Theoretical and empirical considerations in the investigation of the relationship between affect and cognition in atypical populations of infants: Contributions to the formulation of an integrative theory of development. In Emotions, Cognition and Behavior, edited by D. Izard, J. Lagan, R. Zajonc, et al., 366-406. New York: Cambridge University Press.
6. Cicchetti, D. and K. Toth. 1992. The role of developmental theory in prevention and intervention. Developmental Psychopathology 1002 (4):489-93.
7. Cleft Lip and Palate: Critical Elements of Care, The Center for Children with Special Health Needs Children's Hospital and Regional Medical Center, Revised May 2003. Available at www.cshcn.org/forms/CLP5-03.pdf, accessed August 22, 2005.
8. Clinical Standards Advisory Group. 1998.Martin Harris, Chair. London: The Stationery Office, Crown Copyright. The Cochrane Collaboration. 2004. www.cochrane.org/indexo.htm, accessed August 22, 2005.
9. Coy, K., M. L. Speltz, and K. Jones. 2002. Facial appearance and attachment in infants with orofacial clefts: A replication. Cleft Palate-Craniofacial Journal 39 (1):66-72.
10. Edwards, T. C., C. E. Huebner, F .A. Connell, and D. L. Patrick. 2002. Adolescent quality of life, Part I: Conceptual and measurement model. Journal of Adolescence 25(3):275-86.
11. Edwards, T. C., D. L. Patrick, T. K. Topolski, C. Aspinall, W. E. Mouradian, et al. (2005). Approaches to craniofacial-specific quality of life assessment in adolescence. Cleft Palate-Craniofacial Journal 42 (1):19-24.
12. Emerson, M., T.Owen, and N. Rumsey. 2004.Auditing the psychosocial adjustment of children affected by a cleft. Presented at the annual meeting of the Craniofacial Society of Great Britain and Ireland, April, 2004, Bath, UK.
13. Glaser, B. G., and A. L. Strauss. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine De Gruyter.
14. Harper, D. C., L. C. Richman, and B. C. Snyder. 1980. School adjustment and degree of physical impairment. Journal of Pediatric Psychology 5:377-82.
15. Heller, A.,W. Tidmarsh, and I. B. Pless. 1981. The psychosocial functioning of young adults born with cleft lip or palate. A follow-up study. Clinical Pediatrics 20 (7):459-65.
16. Herskind, A., K. Christensen, K. Juel, and P. Fogh-Anderson. 1993.Cleft lip: A risk factor for suicide. [Abstract]. 7th International Congress on cleft palate and related craniofacial anomalies. Australia, 156.
17. Hickey, A., G. Bury, C.O'Boyle, F. Bradley, et al. 1996.A new short form individual quality of life measure (SEIQoL-DW): Application in a cohort of individuals with HIV/AIDS. British Medical Journal 313 (7048):29-33.
18. Kapp-Simon, K. A. 1998.Mental development and learning disorders in children with single suture craniosynostosis. Cleft Palate-Craniofacial Journal 35 (3):197-203.
19. Lansdown, R., N. Rumsey, E. Bradbury, et al. 1997. Visibly Different: Coping with Disfigurement. Oxford: Butterworth-Heinemann.
20. Maris, M. A., M. C. Endriga, M. L. Speltz, et al. 2000. Are infants with orofacial clefts at risk for insecure mother-child attachment? Cleft Palate-Craniofacial Journal 37 (3):257-65.
21. McWilliams, B. J., and L. P. Paradise. 1973. Educational, occupational, and marital status of cleft palate adults. Cleft Palate Journal 10:223-29.
22. Mouradian,W. E. 2001. Deficits versus strengths: Ethics and implications for clinical practice and research. Cleft Palate-Craniofacial Journal 38:255-59.
23. Nash, P. 1995. Living with Disfigurement: The Psychosocial Implications of Being Born with a Cleft Lip and Palate. Avebury: Aldershot.
24. Pal, D. K. 1996. Quality of life assessment in children: A review of conceptual and methodological issues in multidimensional health status measures. Journal of Epidemiology and Community Health 50:391-96.
25. Partridge, J. 1990. Changing Faces. London: Penguin Group.
26. Patrick,D. L. 1997.Rethinking prevention for people with disabilities, part I: A conceptual model for promoting health. American Journal of Health Promotion 11:257-63.
27. Patrick, D. L., T. C. Edwards, and T. D. Topolski. 2002. Adolescent quality of life, part II: Initial validation of a new instrument. Journal of Adolescence 25 (3):287-300.
28. Peter, J. P., and R. R. Chinsky. 1974. Sociological aspects of cleft palate adults: I.Marriage. Cleft Palate Journal 11:295-309.
29. Peter, J. P., R. R.Chinsky, and M. J. Fisher. 1975. Sociological aspects of cleft palate adults. III.Vocational and economic aspects. Cleft Palate-Craniofacial Journal 12:193-99.
30. Richman, L. C. 1976. Behavior and achievement of the cleft palate child. Cleft Palate-Craniofacial Journal 13:4-10.
31. Robinson, E. 1997. Psychological research on visible differences in adults. In Visibly Different: Coping with Disfigurement, edited by R. Lansdown, N. Rumsey, E. Bradbury, A. Carr, and J. Partridge, 102-11. Oxford: Butterworth Heineman.
32. Robinson, E., N. Rumsey, and J. Partridge. 1996.An evaluation of the impact of social interaction skills training for facially disfigured people. British Journal of Plastic Surgery 1 (49):281-89.
33. Rumsey, N. 1998. Quality of life issues in complex craniofacial care. Presented at the 55th annual meeting of the American Cleft Palate and Craniofacial Association, April, Baltimore.
34. -. 2002. Body image and congenital conditions. In Body Image: A Handbook of Theory, Research and Clinical Practice, edited by T. Cash and T. Pruzinsky, 226-33. New York: Guilford.
35. Schor, E. L. 1998. Children's health and the assessment of health-related quality of life. In Measuring Health-related Quality of Life in Children and Adolescents, edited by D. Drotar, 25-37. Mahwah, NJ: Erlbaum.
36. Shaw,W. C., et al. 1992a. A six-center international study of treatment outcomes in patients with clefts of the lip and palate: Part 1. Principles and study design. Cleft Palate-Craniofacial Journal 29 (5):393-97.
37. -. 1992b. A six-center international study of treatment outcomes in patients with clefts of the lip and palate: Part 5.General discussion and conclusions. Cleft Palate-Craniofacial Journal 29 (5):413-18.
38. Shaw W., A.Williams, J. Sandy, and B. Devlin. 1996. Minimum standards for the management of cleft lip and palate: Efforts to close the audit loop. Annals of the Royal College of Surgeons of England 78:110-14.
39. Simon, D. J., and K. Kapp-Simon. 1992.Meeting the Challenge: A Social Skills Training Program for Adolescents with Special Needs. Available from Kapp-Simon, University of Illinois.
40. Speltz, M. L., M. T. Greenberg, and M. C. Endriga, et al. 1994. Developmental approach to the psychology of craniofacial anomalies. Cleft Palate-Craniofacial Journal 31 (1):61-67.
41. Speltz, M. L., H. Galbreath, and M. T. Greenberg. 1995. A developmental framework for psychosocial research on young children with craniofacial anomalies. In Developmental Perspectives on Craniofacial Problems, edited by R. Elder, 258-86. New York: Springer-Verlag.
42. Speltz, M. L., M. C. Endriga, and W. E. Mouradian. 1997. Presurgical and postsurgical mental and psychomotor development of infants with sagittal synostosis. Cleft Palate-Craniofacial Journal 34 (5):374-79.
43. Spieth, L. E., and C.V. Harris. 1996. Assessment of health-related quality of life in children and adolescents: An integrative review. Journal of Pediatric Psychology 21:175-93.
44. Sroufe, L., and M. Rutter. 1984. The domain of psychopathology. Child Development 55:17-29.
45. Starr, P. 1983. Cleft Lip and or Palate: Behavioral Effects from Infancy to Adulthood. Springfield, IL: Charles C. Thomas.
46. Strauss, A., and J. Corbin. 1990. Basics of Qualitative Research. Newbury Park, CA: Sage.
47. Strauss, R. P.,H. Broder, and R.W.Helms. 1988. Perceptions of appearance and speech by adolescent patients with cleft lip and palate and by their parents. Cleft Palate Journal 25 (4):335-42.
48. Tarnowski, K.J., and L. K. Rasnake. 1994. Long-term psychosocial sequelae. In Behavioral Aspects of Pediatric Burns, edited by K. J. Tarnowski, 81-114. New York: Plenum.
49. Tobiasen, J. M., A. Perkins, J.Weaver, et al. 1992. Incidence of psychological adjustment problems in children and adolescents with cleft lip and palate. Paper presented at the 49th annual meeting of the American Cleft Palate-Craniofacial Association, Portland, OR.
50. Tobiasen, J., and M. L. Speltz. 1996. Cleft palate: A psychosocial developmental perspective. In Cleft Lip & Palate: Perspectives in Management, edited by S. Berkowitz, 2:15-23. Singular Publishing Group: San Diego.
51. Topolski, T., T. C. Edwards, and D. L. Patrick (2005). Quality of life: How do adolescents with facial differences compare with other adolescents? Cleft Palate-Craniofacial Journal 42 (1):25-32.
52. Van Demark, D. R., and A. A. Van Demark. 1970. Speech and socio-vocational aspects of individuals with cleft palate. Cleft Palate Journal 7:284-99.
53. Williams A.,D. Bearn, S.Mildinhall, et al. 2001. Cleft lip and palate care in the UK-The CSAG Study Part 2: Dentofacial outcomes and patient satisfaction. Cleft Palate-Craniofacial Journal 38 (1):24-29.
54. WHOQOL Group. 1994. The development of the World Health Organization Quality of Life Assessment Instrument (the WHOQOL). In Quality of Life Assessment: International Perspectives, edited by J. Orley and W. Kuyken, 41-57. Berlin: Springer-Verlag.
55. -. 1995. The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine 41 (10):1403-9.
56. -. 1997.Measuring Quality of Life: The World Health Organization Quality of Life Instruments (The WHOQOL-100 and the WHOQOL-BREF). Geneva, Switzerland:World Health Organization.
57. World Health Organization. 1948.Constitution of the World Health Organization. Geneva:World Health Organization.