Assessing Quality of Life

Evidence-Based Pediatrics and Child Health with CD-ROM

Volumn , Issue , 2007, Pages 99-110

  Waters, Elizabeth ^a,b   Maher, Elise ^c  

^a UNIVERSITY OF MELBOURNE   (Australia)

^b UNIVERSITY OF OXFORD   (United Kingdom)

^c ROYAL CHILDREN'S HOSPITAL   (Australia)

Author keywords

Condition specific instruments; Geriatric health; Internal reliability; Quality of life; Validity

Indexed keywords

EID: 84955159759     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1002/9780470987384.ch11     Document Type: Chapter

References (102)

1. Guyatt GH, Naylor D, Juniper E, Heyland DK, Jaeschke R, Cook DJ. How to use articles about health-related quality of life measurements. internet Communication, 1999.
2. Wake M, Hesketh K, Cameron F. Functional health status of children with diabetes. Diabet Med 2000;17:700-7.
3. Waters EB, Wake M, Hesketh K, Ashley D, Smibert E. Health-related quality of life of children with acute lymphoblastic leukemia: parent and clinician reports, Int J Cancer 2003; 103(04):514-518.
4. Vogels T, Verrips GW, Verloove-Vanhorick SP et al. Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 1998;7:457-465.
5. Raphael D, Rukholm E, Brown I, Hill-Bailey P, Donato E. The Quality of Life Profile-Adolescent Version: background, description and initial validation. J Adolesc Health 1996; 19: 366-75.
6. Eisen M, Ware JA. Measuring components of children's health status. Med Care 1979; 17:921.
7. Pless IB, Perrin JM. Issues common to a variety of illnesses. In: Hobbs N, Perrin JM, eds. Issues in the care of children with chronic illnesses. San Francisco: Jossey-Bass, 1985.
8. Starfield B, Riley AW, Green BF et al. The adolescent child health and illness profile. A population-based measure of health. Med Care 1995;33:553-66.
9. Bottos M, Feliciangeli A, Sciuto L, Gericke C, Vianello A. Functional status of adults with cerebral palsy and implications for treatment with children. Dev Med Child Neurol 2001;43:516-28.
10. Bombardier C, Tugwell P. Methodological considerations in functional assessment. J Rheumatol 1987;14:6-10.
11. Sullivan SA, Olson LM. Developing condition-specific measures of functional status and well-being for children. Clin Perform Qual Health Care 1995;3:132-9.
12. Schmidt LJ, Garratt AM, Fitzpatrick R. Child/parent- assessed population health outcome measures: a structured review. Child Care Health Dev 2002;28:227-37.
13. Schwimmer JB, Burwinkle TM, Varni JW. Health-related quality of life of severely obese children and adolescents. JAMA 2003;289:1819.
14. Stewart MG. Pediatric outcomes research: Development of an outcomes instrument for tonsil and adenoid disease. Laryngoscope 2000; 110:12-15.
15. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child 2001;84:211.
16. World Health Organization. Measuring quality of life: the development of the World Health Organization Quality of Life Instrument (WHOQOL). Geneva: Division of Mental Health, World Health Organisation, 1993.
17. Bradlyn AS, Ritchey AK, Harris DV et al. Quality of life research in paediatric oncology: research methods and barriers. Cancer 1996;78:1333-9.
18. Ronen GM, Rosenbaum P, Law M et al. Health-related quality of life in childhood disorders: A modified focus group technique to involve children. Qual Life Res 2001;10:71-9.
19. Warschausky S, Kay JB, Buchman S, Halberg, A, Berger M. Health-related quality of life in children with cranifacial anomalies. Plast Reconstr Surg 2002;110:409-14.
20. Spilker B, Revicki DA. Taxonomy of quality of life. In: Spilker B, ed. Quality of life and pharmacoeconomics. Philadelphia: Lippincott-Raven, 1996.
21. Irrgang JJ, Anderson AF. Development and validation of health-related quality of life measures of the knee. Clin Orthop 2002;1:95-109.
22. Cummins RA, Eckersley R, Pallant J, Misajon R. Developing a national index of subjective well-being: The Australian Unity Well-being Index. Soc Indic Res 2003;64:159-180.
23. World Health Organization. Official records of the World Health Organization 1948;2:100.
24. Levi R, Drotar D. Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health conditions. In: Drotar D, ed. Measuring health-related quality of life in children and adolescents: Implications for research and practice. New Jersey: Lawrence Erlbaum, 1998.
25. Juniper EF. How important is quality of life in pediatric asthma? Pediatr Pulmonol 1997; 15:17-21.
26. World Health Organization. Measurement of quality of life in children. Division of Mental Health. Geneva, World Health Organization, 1993.
27. Bergner M, Rothman ML. Health status measures: an overview and guide for selection. Annu Rev Public Health 1987;8:191-210.
28. Wasson JH, Kairys SW, Nelson EC, Kalishman N, Baribeau P. A short survey for assessing health and social problems of adolescents. J Family Pract 1994;38:489-94.
29. Landgraf J.M., Abetz L, Ware JA. The CHQ user's manual. 1st edition. Boston: The Health Institute, New England Medical Center, 1996.
30. Landgraf JM, Abetz L. Functional status and well-being of children representing three cultural groups: initial self-reports using the CHQ-CF87. Psychol Health 1997;12:839-54.
31. Waters E, Salmon L, Wake M. The Child Health Questionnaire in Australia: reliability, validity and population means. Aust NZ J Public Health 2000;24:207-10.
32. Stein RK, Jessop DJ. Functional status II(R). A measure of child health-status. Med Care 1990;28:1041-55.
33. Dossetor DR, Liddle JLM, Mellis CM. Measuring health outcomes in pediatrics: development of the RAHC measure of function. JPaediatr Child Health 1996;32:519-24.
34. Theunissen NM, Vogels T, Koopman HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998;7:387-97.
35. Fekkes M, Theunissen NC, Brugman E et al. Development and psychometric evaluation of the TAPQOL: a health- related QOL instrument for 1-5 year old children. Qual Life Res 2000;9:961-72.
36. Kaplan RM, Debon M, Anderson BF. Effects of number of rating-scale points upon utilities in a quality of well-being scale. Med Care 1991;106:1-4.
37. Graham P, Stevenson J, Flynn D. A new measure of health-related quality of life for children: preliminary findings. Psychol Health 1997;655-65.
38. Varni JW, Seid M, Rode CA. The PedsQL: Measurement model for the pediatric quality of life inventory. Med Care 1999;37:126-39.
39. Apajasalo M, Sintonen H, Holmberg C et al. Quality of life in early adolescence: a sixteen-dimensional health-related measure (16D). Qual Life Res 1996;5:205-11.
40. Apajasalo M, Rautonen JA, Holmberg C et al. Quality of life in pre-adolescence: a 17-dimensional health-related measure (17D). Qual Life Res 1996;5:532-8.
41. Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 1998;7:399-407.
42. Spencer NJ, Coe CA. The development and validation of a measure of parent-reported child health and morbidity: the Warwick Child Health and Morbidity Profile. Child Care Health Dev 1996;22:367-79.
43. Koopman HM, Kamphuis RP, Verrips GH et al. The DUCATQOL: a global measure of quality of life of school- aged children (abstract). Qual Life Res 1997;6:428.
44. Collier J, MacKinlay D. Developing a generic child quality of life measure. Health Psychol Update 1997;28:12-16.
45. Phipps S, Dunavant M, Jayawardene D, Srivastiva DK. Assessment of health related quality of life in acute inpatient settings: Use of the BASES scales in children undergoing bone marrow transplantation. Int J Cancer 1999; 12(Suppl.):18-24.
46. Eiser C, Havermans T, Craft A, Kernahan J. Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child 1995;72:302-7.
47. Goodwin DA, Boggs SR, Graham-Pole J. Development and validation of the Pediatric Oncology Quality of Life Scale. Psychol Assess 1994;6:321-8.
48. Varni JW, Katz ER, Seid M, Quiggins DJ, FriedmanBender A. The pediatric cancer quality of life inventory-32 (PCQL-32). I. Reliability and validity. Cancer 1998;82: 1184-96.
49. Feeny D, Furlong W, Barr R, Torrance GW, Rosenbaum P, Weitzman SA. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 1992;10:923-8.
50. Bradlyn AS, Harris CV, Warner JE, Ritchey AK, Zaboy K. An investigation of the validity of the quality of well-being scale with pediatric oncology patients. Health Psychol 1993; 12:246-50.
51. Martinez-Climent J, Sanchez VC, Menor CE, Miralles AV, Tortajada JF. Scale for assessing quality of life of children survivors of cranial posterior fossa tumors. Med Care 1994; 22:67-76.
52. Armstrong FD, Toledano SR, Miloslavich K et al. The Miami Pediatric Quality of Life Questionnaire: Parent scale. Int J Cancer 1999; 12(Suppl.):11-17.
53. Lansky SB, List MA, Lansky LL, Ritter-Sterr C, Miller DR. The measurement of performance status in childhood cancer patients. Cancer 1987;60:1651-6.
54. Lansky LL, List MA, Lansky SB, Cohen ME, Sinks LF. Toward the development of a play performance scale for children (PPSC). Cancer 1985;56(7 Suppl.):1837-40.
55. Hunt SM. Cross-cultural issues in the use of quality of life measures in randomized controlled trials. In: Staquet MJ, Hays RM, Fayers PM, eds. Quality of life assessment in clinical trials: methods and practice. Oxford, UK: Oxford University Press, 1999:51-68.
56. Pantell RH, Lewis D. Measuring the impact of medical care on children. J Chronic Dis 1987;40:995.
57. Hester N. Child's health self-concept scale: its development and psychometric properties. Ans Adv Nurs Sci 1984;7:45-55.
58. Kellerman J, Zeltzer L, Ellenberg L. Psychological effects of illness in adolescence: anxiety, self esteem and perception of control. J Pediatr 1980;97:126.
59. Smith S. Measurement of quality of life, behaviour, and health outcomes in children with otitis media with effusion. Ph.D. thesis: University of Nottingham, 1998.
60. Poggie JJ. Toward quality control in key informant data. Human Organisation 1972;31:23-30.
61. Freeman LC, Romney AK. Words, deeds and social structure: a prelimininary study of reliability of informants. Human Organisation 1987;46:330-4.
62. Streiner DL, Norman GR. Health Measure Scales: a practical guide to their use. New York: Oxford University Press, 1995.
63. Nunnally JC. Psychometric Theory, 2nd edn. New York: Basic Books, 1978.
64. Carmines E, Zeller R. Reliability and validity assessment. Newbury Park: Sage Publications, 1979.
65. McDowell I, Newell C. Measuring Health. A guide to rating scales and questionnaires, 2nd edn. New York: Oxford University Press, 1996.
66. Bowling A. Measuring Health. A review of quality of life measurement scales. 2nd edn. Buckingham: Oxford University Press, 1997.
67. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Disease Child 2001; 1084:205-11.
68. Feeny D, Furlong W, Barr RD. Multiattribute approach to the assessment of health-related quality of life: Health utilities index. Med Pediatr Oncol 1998;54-9.
69. Lindstrom B, Eriksson B. Quality of life among children in the Nordic countries. Qual Life Res 1993;2:23-32.
70. Maes S, Bruil J. Assessing the quality of life in children with a chronic illness. In: Rodriguez-Marin J, ed. Health psychology and quality of life research. Alicante, Spain: Health Psychology Department, University of Alicante, 1995.
71. Singh G, Athreya BH, Fries JF, Goldsmith DP. Measurement of health-status in children with Juvenile rheumatoidarthritis. Arthr Rheum 1994;37:1761-9.
72. Akobeng AK, Suresh-Babu MV, Firth D, Miller V, Mir P, Thomas AG. Quality of life in children with Chrohn's Disease: a pilot study. J Pediatr Gastroenterol Nutr 1999;28.
73. Baker GA, Smith DF, Dewey M, Jacoby A, Chadwick DW. The initial development of a health-related quality of life model as an outcome measure in epilepsy. Epilepsy Res 1993;16:65-81.
74. Christie MJ, French D, Sowden A, West A. Development of child-centred disease-specific questionnaires for living with asthma. Psychosom Med 1993;55:541-8.
75. Climent JM, Reig A, Sanchez J, Roda C. Construction and validation of a specific quality of life instrument for adolescents with spine deformities. Spine 1995;20: 2006-11.
76. Creer TL, Wigal JK, Kotses H, Hatala JC, McConnaughty K, Winder JA. A life activities questionnaire for childhood asthma. J Asthma 1993;30:467-73.
77. Duffy CM, Arsenault L, Duffy KN, Paquin JD, Strawczynski HA. The Juvenile Arthritis Quality of Life Questionnaire- development of a new responsive index for Juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol 1997;24:738-46.
78. Finlay AY, Lewis-jones MS, Sharp JL, Dykes PJ. Children's dermatology life quality index: cartoon version validation. Br J Dermatol 1998; 139(Suppl. 51):67-8.
79. Griffiths AM, Nicholas D, Smith C et al. Development of a quality of life index for pediatric inflammatory bowel disease; dealing with differences related to age and IBD type. J Pediatr Gastroenterol Nutr 1999;28.
80. Gupta KY, Asmussen L, Olsen LM. The Ear Infection Survey (EIS). Psychometric Testing of a Functional Status Measure for Young Children with Otitis Media, 1999.
81. Henry B, Grosskopf C, Aussage P, de Fontbrune JM, Goehrs JM. Measuring quality of life in children with cystic fibrosis: The cystic fibrosis questionnaires (CFQ) (Abstract). Pediatric Pulmonology 1999;S14:331.
82. Hoare P, Russell M. The quality of life of children with chronic epilepsy and their families: Preliminary findings with a new assessment measure. Dev Med Child Neurol 1995;37:689-96.
83. Ingersoll GM, Marrero DG. A modified quality-of-life measure for youths: psychometric properties. Diabetes Educ 1991;17:114-18.
84. Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality-of-life (Qol) in children with asthma. J Allergy Clin Immunol 1995;95:226.
85. Juniper EF. Assessing quality of life in adults and children with asthma and rhinitis. ACI Internat 1997;9:5-9.
86. Langeveld JH, Koot HM, Loonen MCB, Hazebroek-Kampschreur AAJM, Passchier J. A quality of life instrument for adolescents with chronic headache. Cephalalgia 1996;16:183-96.
87. Lewis-Jones MS, Finlay AY. The children's dermatology life quality index (CDLQI)-Initial validation and practical use. Br J Dermatol 1995; 132:942-9.
88. Parkin PC, Kirpalani HM, Rosenbaum PL et al. Development of a health-related-quality of life instrument for use in children with spina bifida. Qual Life Res 1997; 6:123-32.
89. Pilpel D, Leiberman E, Zadik Z, Carel CA. Effect of growth hormone treatment on quality of life of short-stature children. Horm Res 1995;44:1-5.
90. Rabbett H, Elbadri A, Thwaites R et al. Quality of life in children with Chrohn's disease. J Pediatr Gastroenterol Nutr 1996;23:528-33.
91. Rosenfeld RM, Goldsmith AJ, Tetlus L, Balzano A. Quality of life for children with otitis media. Arch Otolaryngol Head Neck Surg 1997;123:1049-54.
92. Usherwood TP, Scrimgeour A, Barber JH. Questionnaire to measure perceived symptoms and disability in asthma. Arch Disease Child 1990;65:779-81.
93. Wildrick D, Parker-Fisher S, Morales A. Quality of life in children with well-controlled epilepsy. J Neurosc Nurs 1996;28:192-8.
94. Wright FV, Law M, Crombie V, Goldsmith CH, Dent P. Development of a self-report functional status index for juvenile rheumatoid arthritis. J Rheumatol 1994;21: 536-44.
95. Eiser C, Havermans T, Craft A, Kernahan J. Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child 1995;72:302-7.
96. Juniper E, Guyatt GH, Feeny D, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in children with asthma. Qual Life Res 1996;5:35-46.
97. Billingham LJ, Abrams KR, Jones DR. Methods for the analysis of quality-of-life and survival data in health technology assessment. 3. Health Technol Assess 1999.
98. Lydick E, Yawn B. Clinical interpretation of health-related quality of life data. In: Staquet MJ, Hays RD, Fayers PM, eds. Quality of Life Assessment in Clinical Trials. New York: Oxford University Press, 1999.
99. Campbell K, Waters E, O'Meara S, Summerbell C. Prevention of obesity in children [Protocol]. Cochrane Collaboration. Cochrane Library, Issue 4. Oxford: Update Software, 1999.
100. Campbell K, Summerbell C., O'Meara S, Waters E. Treatment of obesity in childhood [Protocol]. Cochrane Collaboration. Cochrane Library, Issue 4. Oxford: Update Software, 1999.
101. Waters E, Campbell R, Webster P, Spencer NJ. The effects of smoking cessation and prevention programs for families and carers on child health outcomes (protocol). Cochrane Collaboration. Cochrane Library, Issue 3. Oxford: Update Software, 1999.
102. Waters EB, Wake M, Hesketh K, Ashley D, Smibert E. Health-related quality of life of children with acute lymphoblastic leukemia: comparisons and correlations between parent and clinician reports. Int J Cancer 2003; 103:514-18.