Linking quality-of-life measures using the international classification of functioning, disability and health and the International Classification of Functioning, Disability and Healthychildren and youth version in chronic health conditions: The example of young people with hemophilia

American Journal of Physical Medicine and Rehabilitation

Volumn 91, Issue 13 SUPPL.1, 2012, Pages

  Krasuska, Marta ^a   Riva, Silvia ^a   Fava, Leonardo ^a   Von Mackensen, Sylvia ^a   Bullinger, Monika ^a  

^a UNIVERSITY MEDICAL CENTER HAMBURG EPPENDORF   (Germany)

Author keywords

Children; Hemophilia; ICF; ICF CY; Quality of life

Indexed keywords

ADOLESCENT; AGE; ARTICLE; CHILD; CHILD WELFARE; CHRONIC DISEASE; CLASSIFICATION; COMPARATIVE STUDY; CROSS-SECTIONAL STUDY; DAILY LIFE ACTIVITY; DISABILITY; DISABLED PERSON; FAMILY RELATION; FEMALE; GERMANY; HANDICAPPED CHILD; HEMOPHILIA A; HUMAN; HUMAN RELATION; INTERNATIONAL CLASSIFICATION OF DISEASES; MALE; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; RISK ASSESSMENT; SELF CONCEPT; SEX DIFFERENCE; SICKNESS IMPACT PROFILE;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; AGE FACTORS; CHILD; CHILD WELFARE; CHILD, PRESCHOOL; CHRONIC DISEASE; CROSS-SECTIONAL STUDIES; DISABILITY EVALUATION; DISABLED CHILDREN; DISABLED PERSONS; FAMILY RELATIONS; FEMALE; GERMANY; HEMOPHILIA A; HUMANS; INTERNATIONAL CLASSIFICATION OF DISEASES; INTERPERSONAL RELATIONS; MALE; QUALITY OF LIFE; QUESTIONNAIRES; RISK ASSESSMENT; SELF CONCEPT; SEX FACTORS; SICKNESS IMPACT PROFILE;

EID: 84871025403     PISSN: 08949115     EISSN: 15377385     Source Type: Journal    
DOI: 10.1097/PHM.0b013e31823d4f35     Document Type: Article

References (30)

1. Bolton-Maggs PHB, Pasi KJ: Haemophilias A and B. Lancet 2003; 361:1801-9
2. White GC, Rosendaal F, Aledort L.M., et al.: Definitions in hemophilia-recommendation of the Scientific Subcommittee on factor VIII and factor IX of the Scientific and Standardization Committee of the International Society on Thrombosis and Haemostasis. Thromb Haemost 2001; 85:560
3. Pollmann H, Richter H, Ringkamp H., et al.: When are children diagnosed as having severe haemophilia and when do they start to bleed? A 10-year single-centre PUP study. Eur J Pediatr 1999; 158:S166-70
4. Manco-Johnson M: Comparing prophylaxis with episodic treatment in haemophilia A: implications for clinical practice. Haemophilia 2007; 13:4-9
5. World Health Organization: Report of Joint WHO/WFH Meeting on the Control of Haemophilia: Delivery of Treatment for Haemophilia. Geneva, Switzerland: WHO, 2002
6. Bullinger M, Schmidt S, Petersen C., et al.: Quality of life-evaluation criteria for children with chronic conditions in medical care. J Public Health 2006; 14:343-55
7. Ljung R, van den Berg M, Valentino LA, et al.: The Fourth Annual Meeting of the International Network for Pediatric Hemophilia: Current challenges and recommendations in the clinical care of children with hemophilia. Transfus Med Hemother 2010; 37:209-12
8. Bullinger M: Assessing health related quality of life in medicine. An overview over concepts, methods and applications in international research. Restor Neurol Neurosci 2002; 20:93-101
9. Bullinger M, Power MJ, Aaronson N.K., et al.: Creating and evaluating cross-cultural instruments, in: Spilker BS (ed): Quality of Life and Pharmaeconomics in Clinical Trials. Philadelphia, PA: Lippincott-Raven, 1996, pp. 659-68
10. Stewart AL, Greenfield S, Hays R.D., et al.: Functional status and well-being of patients with chronic conditions - results from the medical outcomes study. JAMA 1989; 262:907-13
11. Colver A: Quality of life and participation. Dev Med Child Neurol 2009; 51:656-9
12. Lindvall K, Colstrup L, Wollter I.M., et al.: Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia 2006; 12:47-51
13. Fromme A, Dreeskamp K, Pollmann H., et al.: Participation in sports and physical activity of haemophilia patients. Haemophilia 2007; 13:323-7
14. WHO: International statistical classification of disease and related health problems. Geneva, Switzerland: WHO, 1992
15. WHO: International Classification of Functioning, Disability and Health: ICF. Geneva, Switzerland: WHO, 2001
16. WHO: International Classification of Functioning, Disability and Helath. Children and Youth Version: ICF-CY. Geneva, Switzerland: WHO, 2007
17. Cieza A, Stucki G: The international classification of functioning disability and health: Its development process and content validity. Eur J Phys Rehabil Med 2008; 44:303-13
18. Stucki G, Kostanjsek N, Ustun B., et al.: ICF-based classification and measurement of functioning. Eur J Phys Rehabil Med 2008; 44:315-28
19. The DISABKIDS Questionnaires. Quality of life questionnaires for children with chronic conditions. Handbook. Lengerich, Germany: Pabst Science Publishers, 2006
20. von Mackensen S., Bullinger M, Haemo-Qol G: Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL). Haemophilia 2004; 10:17-25
21. Riva S, Bullinger M, Amann E., et al.: Content comparison of haemophilia specific patient-rated outcome measures with the International Classification of Functioning, Disability and Health (ICF, ICF-CY). Health Qual Life Outcomes 2010; 8:139-44
22. Bullinger M, Gringeri A, von Mackensen S: Quality of life of young patients with haemophilia in Europe. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2008; 51:637-45
23. Fava L, Muehlan H, Bullinger M: Linking the DISABKIDS modules for health-related quality of life assessment with the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil 2009; 31:1943-54
24. Baars RM, Atherton CI, Koopman H.M., et al.: 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 2005; 3:70
25. Broderick CR, Herbert RD, Latimer J, et al.: Fitness and quality of life in children with haemophilia. Haemophilia 2010; 16:118-23
26. Chevallet L, Weatherall JH, Von MS: Linguistic validation of the Haemo-QoL and Haem-A-Qol for use in international studies. Value Health 2008; 11:165-9
27. Cieza A, Brockow T, Ewert T., et al.: Linking health-status measurements to the international classification of functioning, disability and health. J Rehabil Med 2002; 34:205-10
28. Cieza A, Geyh S, Chatterji S., et al.: Icf linking rules: An update based on lessons learned. J Rehabil Med 2005; 37:212-8
29. International Classification of Functioning Disability and Health. Available at: http://www.who.int/classifications/icf/training/icfchecklist.pdf. Accessed June 15, 2011
30. Cieza A, Hilfiker R, Boonen A., et al.: Items from patient-oriented instruments can be integrated into interval scales to operationalize categories of the International Classification of Functioning, Disability and Health. J Clin Epidemiol 2009; 62:912-21, 21.e1-3