Quality of life - Evaluation criteria for children with chronic conditions in medical care

Journal of Public Health

Volumn 14, Issue 6, 2006, Pages 343-355

  Bullinger, Monika ^a   Schmidt, Silke ^a   Petersen, Corinna ^a   Ravens Sieberer, Ulrike ^a,b  

^a UNIVERSITY MEDICAL CENTER HAMBURG EPPENDORF   (Germany)

^b ROBERT KOCH INSTITUTE   (Germany)

Author keywords

Assessment; Children; Chronic conditions; Cross cultural; Quality of life

Indexed keywords

ADOLESCENT; CHILD; CHRONIC DISEASE; HUMAN; INSTRUMENT; MEDICAL ASSESSMENT; MEDICAL CARE; OUTCOME ASSESSMENT; PSYCHOMETRY; QUALITY OF LIFE; REHABILITATION CARE; REVIEW; SELF REPORT; WELLBEING;

EID: 33750740742     PISSN: 09431853     EISSN: None     Source Type: Journal    
DOI: 10.1007/s10389-006-0066-0     Document Type: Review

References (45)

1. Baars RM, Atherton CI, Koopman HM, Bullinger M, Power M; DISABKIDS Group (2005) The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes 13(3):70
2. Bender BG (1996) Measurement of quality of life in pediatric asthma clinical trials. Ann Allergy Asthma Immunol 77(6):438-447
3. Bullinger M (1991) Quality of life: definition, conceptualization and implications - a methodologist's view. Theor Surg 6:143-149
4. Bullinger M (1997) Gesundheitsbezogene Lebensqualität und subjektive Gesundheit. Psychother Psychosom Med Psychol 47:76-91
5. Bullinger M, von Mackensen S, Kirchberger I (1994) KINDL - ein Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität von Kindern. Zeitschrift für Gesundheitspsychologie 2:64-77
6. Bullinger M, Power MJ, Aaronson NK, Cella DF, Anderson RT (1996) Creating and evaluating cross-cultural instruments. In: Spilker B (ed) Quality of life and pharmacoeconomics in clinical trials, 2nd edn. Lippincott-Raven, Philadelphia, Pennsylvania, pp 659-668
7. Bullinger M, Ravens-Sieberer U (1995) General principles, methods and areas of application of quality of life research in children (in German). Prax Kinderpsychol Kinderpsychiatr 44(10):391-399
8. Bullinger M, von Mackensen S, Fischer K, Khair K, Petersen C, Ravens-Sieberer U, Rocino A, Sagnier P, Tusell JM, van den Berg M, Vicariot M (2002a). Pilot testing of the 'Haemo-QoL' quality of life questionnaire for haemophiliac children in six European countries. Haemophilia 8(Suppl 2):47-54
9. Bullinger M, Schmidt S, Petersen C; DISABKIDS Group (2002b) Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res 25(3):197-206
10. Christie MJ, French D, West A (1991) Childhood asthma questionnaire. Allen & Hanbury, London
11. Clark SA, Eiser C (2004) The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review. Health Qual Life Outcomes 22(2):66
12. De Civita M, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA (2005) Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 23(7):659-685
13. Custers JWH, Hoijtink H, van der Net J, Helders PJM (2000) Cultural differences in functional status measurement: analyses of person fit according to the Rasch model. Qual Life Res 9(5):571-578
14. Diener E, Suh EM (eds) (2000) Culture and subjective well-being. MIT Press, Cambridge, Massachusetts
15. Eiser C, Jenney ME (1996) Measuring symptomatic benefit and quality of life in paediatric oncology. Br J Cancer 73(11):1313-1316
16. Ellert U, Thomas C, Ravens-Sieberer U, Kosinski M, Björner JB, Dewey J, Ware JE (2001) Using item response theory to improve QoL measures for children-first results from the child dynamic health assessment project. In: Proceedings of the 8th Annual Conference of the International Society for Quality of Life Research, Amsterdam, The Netherlands, November 2001, vol 10, p 203
17. French DJ, Carroll A, Christie MJ (1998) Health-related quality of life in Australian children with asthma: lessons for the cross-cultural use of quality of life instruments. Qual Life Res 7(5):409-419
18. Gerharz EW, Ravens-Sieberer U, Eiser C (1997) Kann man Lebensqualität bei Kindern messen? Akt Urol 28:355-363
19. Guillemin F, Bombardier C, Beaton D (1993) Cross-cultural adaption of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 46(12):1417-1432
20. Harter S, Whitesell NR (1989) Developmental changes in children's understanding of single, multiple and blended emotion concepts. In: Saarni E, Harris PL (eds) Children's understanding of emotion. Cambridge University Press, New York, pp 81-116
21. Herjanic B, Herjanic M, Brown R, Wheatt T (1975) Are children reliable reporters? J Abnorm Child Psychol 3(1):41-48
22. Landgraf JM, Ware JE, Schor E, Davies AR, Rossi-Roh K (1993) Comparison of health status profiles for children with medical conditions. Preliminary psychometric and clinical results from children's health and quality of life project. Paper prepared for the 10th Annual Meeting for Health Services Research. Washington
23. Landgraf I, Abetz L, Ware J (1997) Child Health Questionnaire (CHQ): a users manual. The Health Institute Press, Boston, Massachusetts
24. Lewis CE (1981) Measuring the well-being of children. Child Health 42:120-125
25. Marra CA, Levine M, McKerrow R, Carleton BC (1996) Overview of health-related quality-of-life measures for pediatric patients: application in the assessment of pharmacotherapeutic and pharmacoeconomic outcomes. Pharmacotherapy 16(5):879-888
26. Perrin EC, Starr MC (1993) Pediatric chronic illness. J Learn Disabil 26(7):426-427
27. Petermann F, Noecker M, Bode U (1987) Psychologie chronischer Krankheiten im Kindes- und Jugendalter: Konzepte und empirische Ergebnisse. 2. Auflage. Verlag, Frankfurt/M
28. Petersen C, Schmidt S, Power M, Bullinger M; DISABKIDS Group (2005) Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res 14(4):1065-1077
29. Ravens-Sieberer U, Bullinger M (1998) Assessing the health related quality of life in chronically ill children with the German KINDL: first psychometric and content- analytical results. Qual Life Res 7(5):399-408
30. Ravens-Sieberer U, Gosch A, Abel T, Auquier P, Bellach BM, Bruil J, Dür W, Power M, Rajmil L; European KIDSCREEN Group (2001a) Quality of life in children and adolescents: a European public health perspective. Sozial- und Präventivmedizin 46 (5):294-302
31. Ravens-Sieberer U, Morfeld M, Stein RE, Jessop DJ, Bullinger M, Thyen U (2001b) The testing and validation of the German version of the impact on family scale in families with children with disabilities. Psychther Psychosom Med Psychol 51(9-10):384-393
32. Ravens-Sieberer U (2003) Der Kindl-R Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen - Revidierte Form. In: Schumacher J, Klaiberg A, Brähler E (eds) Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Hogrefe, Göttingen, Germany, pp 184-188
33. Rosenbaum LP, Saigal S (1996) Measuring health-related quality of life in pediatric populations: conceptual issues. In: Spilker B (ed) Quality of life and pharmaeconomics in clinical trials. Lippincott-Raven, Philadelphia, Pennsylvania, pp 793-802
34. Sartorius N (1987) Cross-cultural comparisons of data about quality of life: a sample of issues. In: Aaronson NK, Beckmann J (eds) The quality of life of cancer patients. Raven Press, New York, pp 1075-1077
35. Schmidt S, Bullinger M (2003) Current issues in cross-cultural quality of life instrument development. Arch Phys Med Rehabil 84(4 Suppl 2):29-34
36. Schmidt S, Debensason D, Mühlan H, Petersen C, Power M, Simeoni MC, Bullinger M;the European DISABKIDS Group (2006a) The DISABKIDS generic quality of life instrument showed cross-cultural validity. J Clin Epidemiol 59(6):587-598
37. Schmidt S, Petersen C, Mühlan H, Simeoni MC, Debensason D, Thyen U, Müller-Godeffroy E, Vidalis A, Tsanakis J, Hatziagorou E, Karagianni P, Koopmann H, Baars J, Chaplin J, Power M, Atherton C, Hoare P, Quittan M, Schuhfried O, Bullinger M (2006b) The DISBKIDS Questionnaire - quality of life questionnaire for children with chronic conditions. Handbook. Pabst Science Publishers, Germany
38. Simmons RG, Blythe DA (1987) Moving into adolescence: the impact of pubertal change and school context. Aldine De Gruyter, Hawthorne, New York
39. Spieth LE, Harris CV (1996) Assessment of health-related quality of life in children and adolescents: an integrative review. J Pediatr Psychol 21(2):175-193
40. Starfield B, Bergner M, Ensminger M, Riley A, Ryan S, Green B, McGauhey P, Skinner A, Kim S (1993) Adolescent health status measurement: development of the Child Health and Illness Profile. Pediatrics 91(2):430-435
41. Starfield B, Riley A (1998) Profiling heath and illness in children and adolescents. In: Drotar D (ed) Measuring health-related quality of life in children and adolescents. Implications for research and practice. Lawrence Erlbaum, Mahwah, New Jersey, pp 85-104
42. Stewart AL, Ware JE Jr, Brook RH (1981) Advances in the measurement of functional status: construction of aggregate indexes. Med Care 19(5):473-488
43. Stewart AL, Ware J (eds) (1992) Measuring function and well-being. Duke University Press, Durham, North Carolina
44. Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, Quiggins DJ (1999) The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). II. Feasibility and range of measurement. J Behav Med 22(4):397-406
45. Varni JW, Burwinkle TM, Seid M, Skarr D (2003) The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 3(6):329-341