Outcomes in pediatric neurology: A review of conceptual issues and recommendationsThe 2010 Ronnie Mac Keith Lecture

Developmental Medicine and Child Neurology

Volumn 53, Issue 4, 2011, Pages 305-312

  Ronen, Gabriel M ^a   Fayed, Nora ^a   Rosenbaum, Peter L ^a  

^a MCMASTER UNIVERSITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

CHILD; CHILD HEALTH CARE; CHILDHOOD DISEASE; CLINICAL RESEARCH; FAMILY; HUMAN; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; NEUROLOGIC DISEASE; OUTCOME ASSESSMENT; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; SOCIAL ENVIRONMENT;

BIOMEDICAL RESEARCH; CHILD; EPILEPSY; HEALTH STATUS; HUMANS; MALE; NEUROLOGY; PARENTS; PEDIATRICS; QUALITY OF LIFE; TREATMENT OUTCOME;

EID: 79952577455     PISSN: 00121622     EISSN: 14698749     Source Type: Journal    
DOI: 10.1111/j.1469-8749.2011.03919.x     Document Type: Review

References (63)

1. Ronen GM, Rosenbaum P, Law M, Streiner DL. Health related quality of life in childhood epilepsy: the results of children's participation in identifying the components. Dev Med Child Neurol 1999; 41: 554-9.
2. De Civita M, Regier-Evaluat D, Alamgir AH, Aslam AH, Fitzgerald MJ, Marra CA. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 2005; 23: 659-85.
3. Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health 2004; 7: 79-92.
4. Ronen GM, Rosenbaum P, Streiner DL. Outcome measures in pediatric neurology: why do we need them? J Child Neurol 2000; 15: 775-80.
5. Spencer SS, Berg AT, Vickrey BG, et al. Health-related quality of life over time since resective epilepsy surgery. Ann Neurol 2007; 62: 327-34.
6. Lavigne JV, Faier-Routman J. Correlates of psychological adjustment to pediatric physical disorders: a meta-analytic review and comparison with existing models. J Dev Behav Pediatr 1993; 14: 117-23.
7. Pless IB, Pinkerton P. Chronic Childhood Disorders: Promoting Patterns of Adjustment. Chicago, IL: Year Book Medical Publishers, 1975.
8. Raghavendra P, Bornan J, Granlund M, Björck-Akesson E. The World Health Organization's International Classification of Functioning Disability and Health: implications for clinical and research practice in the field of augmentative and alternative communication. Augment Altern Commun 2007; 23: 349-61.
9. Thompson RJ, Gustafson KE. Adjustment to Chronic Childhood Illness. Washington, DC: American Psychological Association, 1996.
10. Tomlinson M, Swartz L, Officer A, Chan KY, Rudan I, Saxena S. Research priorities for health of people with disabilities: an expert opinion exercise. Lancet 2009; 374: 1857-62.
11. McCormick MC. Issues in measuring child health. Ambul Pediatr 2008; 8: 77-84.
12. World Health Organization. International Classification of Functioning, Disability and Health. Geneva: World Health Organization Press, 2001.
13. Leonardi M, Ustun TB. The global burden of epilepsy. Epilepsia 2002; 43 (Suppl. 6): 21-5.
14. World Health Organization. International Classification of Impairments, Disabilities and Handicaps (ICIDH). Geneva: World Health Organization Press, 1980.
15. World Health Organization. International Classification of Functioning, Disability and Health - Children and Youth Version ICF-CY. Geneva: World Health Organization Press, 2007.
16. Ueda S, Okawa Y. The subjective dimension of functioning and disability: what is it and what is it for? Disabil Rehabil 2003; 25: 596-601.
17. Hemmingsson H, Jonsson H. An occupational perspective on the concept of participation in the International Classification of Functioning, Disability and Health - some critical remarks. Am J Occup Ther 2005; 59: 569-76.
18. The WHOQOL Group. Study protocol for the World Health Organization project to develop a Quality of Life assessment instrument (the WHOQOL). Qual Life Res 1993; 2: 153-9.
19. Renwick R, Nourhaghighi N, Manns PJ, Rudman DL. Quality of life for people with physical disabilities: a new instrument. Int J Rehabil Res 2003; 26: 279-87.
20. Guyat GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993; 118: 622-9.
21. Lawford J, Eiser C. Exploring links between the concepts of quality of life and resilience. Pediatr Rehabil 2001; 4: 209-16.
22. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48: 977-88.
23. Sodergren SC, Hyland ME, Crawford A, Partridge MR. Positivity in illness: self-delusion or existential growth? Br J Health Psychol 2004; 9: 163-74.
24. Smith KW, Avis NE, Assmann SF. Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res 1999; 8: 447-59.
25. Rosenbaum PL, Livingston MH, Palisano RJ, Galuppi B, Russel DJ. Quality of life and health-related quality of life of adolescents with cerebral palsy. Dev Med Child Neurol 2007; 49: 516-21.
26. de Oliveira CM, Araújo AP. Self-reported quality of life has no correlation with functional status in children and adolescents with spinal muscular atrophy. Eur J Paediatr Neurol 2011; 15: 36-9.
27. Guyatt GH, Veldhuyzen Van Zanten SJO, Feeny DH, Patrick DL. Measuring quality of life in clinical trials: a taxonomy and review. CMAJ 1989; 140: 1441-8.
28. Bergner M. Measurement of health status. Med Care 1985; 23: 696-704.
29. Spilker B, Revicki DA. Taxonomy of quality of life. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, 2nd edn. Philadelphia: Lippincott-Raven, 1996: 25-31.
30. Ronen GM, Streiner DL, Rosenbaum P; CPEN. Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures. Epilepsia 2003; 44: 598-612.
31. Wallander JL. Theory-driven research in pediatric psychology: a little bit on why and how. J Pediatr Psychol 1992; 17: 521-35.
32. Lach LM, Ronen GM, Rosenbaum PL, et al. Health-related quality of life in youth with epilepsy: theoretical model for clinicians and researchers. Part I: the role of epilepsy and co-morbidity. Qual Life Res 2006; 15: 1161-71.
33. Ronen GM, Lach L, Streiner DL, et al. Disease characteristics and psychosocial factors: explaining the expression of quality of life in childhood epilepsy. Epilepsy Behav 2010; 18: 88-93.
34. Baron RM, Kenny DA. The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. J Pers Soc Psychol 1986; 51: 1173-82.
35. Stein REK. Measurement of children's health. Ambul Pediatr 2004; 4: 365-70.
36. Wallander JL, Schmitt M, Koot HM. Quality of life measurement in children and adolescents: issues, instruments, and applications. J Clin Psychol 2001; 57: 571-85.
37. Meucci P, Leonardi M, Zibordi F, Nardocci N. Measuring participation in children with Gilles de la Tourette syndrome: a pilot study with ICF-CY. Disabil Rehabil 2009; 31 (Suppl. 1): S116-20.
38. Verhey LH, Kulik DM, Ronen GM, Rosenbaum P, Lach L, Streiner DL. Quality of life in childhood epilepsy: what is the level of agreement between youth and their parents? Epilepsy Behav 2009; 14: 407-10.
39. US Department of Health and Human Services FDA: Center for Drug Evaluation and Research, Center for biologics Evaluation and Research, Center for Devices and Radiological Health. Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes 2006; 4:79.
40. Ronen GM, Rosenbaum P, Law M, Streiner DL. Health-related quality of life in childhood disorders: a modified focus group technique to involve children. Qual Life Res 2001; 10: 71-9.
41. Morris C, Liabo K, Wright P, Fitzpatrick R. Development of the Oxford ankle foot questionnaire: finding out how children are affected by foot and ankle problems. Child Care Health Dev 2007; 33: 559-68.
42. Streiner D, Norman G. Health Measurement Scales. A Practical Guide to Their Development and Use, 4th edn. Oxford: Oxford University Press, 2008: 97-8.
43. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 2005; 3: 1-9.
44. Fayed N, Schiariti V, Bostan C, Cieza A, Klassen A. Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions. Qual Life Res DOI: 10.1007/s11136-011-9851-5 [Epub ahead of print].
45. Feeny D, Furlong W, Boyle M, Torrance GW. Multi-attribute health status classification systems. Health utilities index. Pharmacoeconomics 1995; 7: 490-502.
46. King GA, Law M, King S, et al. Measuring children's participation in recreation and leisure activities: construct validation of the CAPE and PAC. Child Care Health Dev 2007; 33: 28-39.
47. Noreau L, Lepage C, Boissiere L, et al. Measuring participation in children with disabilities using the assessment of life habits. Dev Med Child Neurol 2007; 49: 666-71.
48. Ronen GM, Streiner DL, Rosenbaum P. Health related quality of life in childhood epilepsy: moving beyond seizure control with minimal adverse effects. Health Qual Life Outcomes 2003; 1: 36.
49. Cowan J, Baker GA. A review of subjective impact measures for use with children and adolescents with epilepsy. Qual Life Res 2004; 13: 1435-43.
50. Davis E, Waters E, Mackinnon A, et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006; 48: 311-8.
51. Waters E, Davis E, Ronen GM, Rosenbaum P, Livingston M, Saigal S. Quality of life instruments for children and adolescents: conceptual perspectives on how to choose the appropriate instrument for individuals with disabilities. Dev Med Child Neurol 2009; 51: 660-9.
52. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child 2001; 84: 205-11.
53. Harding L. Children's quality of life assessments: a review of generic and health related quality of life measures completed by children and adolescents. Clin Psychol Psychother 2001; 8: 79-96.
54. Rajmil L, Herdman M, Fernandez de Sanmamed MJ, et al. Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J Adolesc Health 2004; 34: 37-45.
55. Ravens-Sieberer U, Erhart M, Wille N. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics 2006; 24: 1199-220.
56. Solans M, Pane S, Estrada MD, et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 2008; 11: 742-64.
57. Fayed N, Kerr E. Comparing quality of life scales in childhood epilepsy: what's in the measures? IJDCR 2009; 8: 3.
58. McLaughlin JF, Bjornson KF. Quality of life and developmental disabilities. Dev Med Child Neurol 1998; 40: 435.
59. Mokkink LB, Terwee CB, Knol DL, et al. The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: a clarification of its content. BMC Med Res Methodol 2010; 10: 22.
60. Hobart JC, Cano SJ, Zajicek JP, Thompson AJ. Rating scales as outcome measures for clinical trials in neurology: problems, solutions and recommendations. Lancet Neurol 2007; 6: 1094-105.
61. Clancy CM, Eisenberg JM. Outcomes research: measuring the end results of health care. Science 1998; 282: 245-6.
62. Singer JD, Willet JB. Applied Longitudinal Data Analysis: Modeling Change and Event Occurrence. Oxford: Oxford University Press, 2003.
63. Norman G, Sloan J. Interpretation: of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care 2003; 41: 582-92.