Bone density and health-related quality of life in adult patients with severe haemophilia

Haemophilia

Volumn 17, Issue 2, 2011, Pages 304-311

  Khawaji, M ^a,b   Astermark, J ^a,b   Von Mackensen, S ^c   Akesson K ^a,b   Berntorp, E ^a,b  

^a LUND UNIVERSITY HOSPITAL   (Sweden)

^b LUND UNIVERSITY   (Sweden)

^c UNIVERSITY MEDICAL CENTER HAMBURG EPPENDORF   (Germany)

Author keywords

Bone density; Haemophilia; Health related quality of life; Prophylaxis

Indexed keywords

BLOOD CLOTTING FACTOR 8; BLOOD CLOTTING FACTOR 9;

ADULT; ARTICLE; BONE DENSITY; CLINICAL ARTICLE; CONTROLLED STUDY; DISEASE SEVERITY; DUAL ENERGY X RAY ABSORPTIOMETRY; EARLY CHILDHOOD INTERVENTION; EMOTION; FEMALE; FEMUR NECK; FRACTURE; GREATER TROCHANTER; HEMOPHILIA A; HEMOPHILIA B; HEPATITIS C; HIP; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; LONG TERM CARE; LUMBAR SPINE; MALE; MENTAL HEALTH; OSTEOPENIA; OSTEOPOROSIS; PRIORITY JOURNAL; PROPHYLAXIS; QUALITY OF LIFE; SHORT FORM 36;

ADULT; AGE FACTORS; ANTHROPOMETRY; BLOOD COAGULATION FACTORS; BODY MASS INDEX; BONE DENSITY; FEMALE; HEALTH STATUS; HEMOPHILIA A; HEMOPHILIA B; HUMANS; MALE; QUALITY OF LIFE; QUESTIONNAIRES; SWEDEN;

EID: 79951786223     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/j.1365-2516.2010.02423.x     Document Type: Article

References (37)

1. De Kleijn P, Heijnen L, Van Meeteren NL. Clinimetric instruments to assess functional health status in patients with haemophilia: a literature review. Haemophilia 2002; 8: 419-27.
2. Gringeri A, Mantovani L, Mackensen SV. Quality of life assessment in clinical practice in haemophilia treatment. Haemophilia 2006; 12(Suppl 3): 22-9.
3. Canadian Medical Association. Hemophilia and von Willebrand's disease: 1 Diagnosis, comprehensive care and assessment. Association of Hemophilia Clinic Directors of Canada. CMAJ 1995; 153: 19-25.
4. von Mackensen S, Gringeri A. Quality of life in hemophilia. In: Christine AL, Erik EB, WKeith H eds. Textbook of Hemophilia. Oxford, UK: Blackwell Publishing Ltd, 2005: 345-50.
5. Bullinger M, von Mackensen S. Quality of life assessment in haemophilia. Haemophilia 2004; 10(Suppl 1): 9-16.
6. Lofqvist T, Nilsson IM, Berntorp E, Pettersson H. Haemophilia prophylaxis in young patients--a long-term follow-up. J Intern Med 1997; 241: 395-400.
7. Manco-Johnson M, Abshire TC, Shapiro AD et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med 2007; 357: 603-5.
8. Nilsson IM, Berntorp E, Lofqvist T, Pettersson H. Twenty-five years' experience of prophylactic treatment in severe haemophilia A and B. J Intern Med 1992; 232: 25-32.
9. Royal S, Schramm W, Berntorp E et al. Quality-of-life differences between prophylactic and on-demand factor replacement therapy in European haemophilia patients. Haemophilia 2002; 8: 44-50.
10. Trippoli S, Vaiani M, Linari S, Longo G, Morfini M, Messori A. Multivariate analysis of factors influencing quality of life and utility in patients with haemophilia. Haematologica 2001; 86: 722-8.
11. Aronstam A, Kirk PJ, McHardy J et al. Twice weekly prophylactic therapy in haemophilia A. J Clin Pathol 1977; 30: 65-7.
12. Aledort LM, Haschmeyer RH, Pettersson H. A longitudinal study of orthopaedic outcomes for severe factor-VIII-deficient haemophiliacs. The Orthopaedic Outcome Study Group. J Intern Med 1994; 236: 391-9.
13. Heijnen L, Buzzard BB. The role of physical therapy and rehabilitation in the management of hemophilia in developing countries. Semin Thromb Hemost 2005; 31: 513-7.
14. von Mackensen S. Quality of life and sports activities in patients with haemophilia. Haemophilia 2007; 13(Suppl 2): 38-43.
15. Hartl HK, Reitter S, Eidher U, Ramschak H, Ay C, Pabinger I. The impact of severe haemophilia on the social status and quality of life among Austrian haemophiliacs. Haemophilia 2008; 14: 703-8.
16. von Mackensen S, Gringeri A. Quality of life in hemophilia. In: Preedy VR, Watson RR eds. Handbook of Disease Burdens and Quality of Life Measures. Heidelberg: Springer, 2009: 1895-920.
17. Barnes C, Wong P, Egan B et al. Reduced bone density among children with severe hemophilia. Pediatrics 2004; 114: e177-81.
18. Gallacher SJ, Deighan C, Wallace AM et al. Association of severe haemophilia A with osteoporosis: a densitometric and biochemical study. Q J Med 1994; 87: 181-6.
19. Avioli LV. Socio-economic costs of osteoporosis and changing patterns. Ann Chir Gynaecol 1988; 77: 168-72.
20. Melton LJ 3rd. Hip fractures: a worldwide problem today and tomorrow. Bone 1993; 14(Suppl 1): S1-8.
21. Lydick E, Zimmerman SI, Yawn B et al. Development and validation of a discriminative quality of life questionnaire for osteoporosis (the OPTQoL). J Bone Miner Res 1997; 12: 456-63.
22. Assessment of fracture risk and its application to screening for postmenopausal osteoporosis. Report of a WHO Study Group. World Health Organ Tech Rep Ser 1994; 843: 1-129.
23. Gold DT. The nonskeletal consequences of osteoporotic fractures psychologic and social outcomes. Rheum Dis Clin North Am 2001; 27: 255-62.
24. Ahnstrom J, Berntorp E, Lindvall K, Bjorkman S. A 6-year follow-up of dosing, coagulation factor levels and bleedings in relation to joint status in the prophylactic treatment of haemophilia. Haemophilia 2004; 10: 689-97.
25. Theintz G, Buchs B, Rizzoli R et al. Longitudinal monitoring of bone mass accumulation in healthy adolescents: evidence for a marked reduction after 16years of age at the levels of lumbar spine and femoral neck in female subjects. J Clin Endocrinol Metab 1992; 75: 1060-5.
26. Christmas C, O'Connor KG, Harman SM et al. Growth hormone and sex steroid effects on bone metabolism and bone mineral density in healthy aged women and men. J Gerontol A Biol Sci Med Sci 2002; 57: M12-8.
27. Karlsson MK, Obrant KJ, Nilsson BE, Johnell O. Bone mineral density assessed by quantitative ultrasound and dual energy X-ray absorptiometry. Normative data in Malmo, Sweden. Acta Orthop Scand 1998; 69: 189-93.
28. Lips P, Cooper C, Agnusdei D et al. Quality of life in patients with vertebral fractures: validation of the Quality of Life Questionnaire of the European Foundation for Osteoporosis (QUALEFFO). Working Party for Quality of Life of the European Foundation for Osteoporosis. Osteoporos Int 1999; 10: 150-60.
29. Miners AH, Sabin CA, Tolley KH, Jenkinson C, Kind P, Lee CA. Assessing health-related quality-of-life in individuals with haemophilia. Haemophilia 1999; 5: 378-85.
30. Sullivan M, Ware J. SF-36 Hälsoenkät: Svensk Manual och Tolkningsguide (Swedish Manual and Interpretation Guide). Goteborg: Sahlgrenska University Hospital, 1994.
31. Astermark J, Petrini P, Tengborn L, Schulman S, Ljung R, Berntorp E. Primary prophylaxis in severe haemophilia should be started at an early age but can be individualized. Br J Haematol 1999; 105: 1109-13.
32. Khawaji M, Astermark J, Akesson K, Berntorp E. Physical activity for prevention of osteoporosis in patients with severe haemophilia on long-term prophylaxis. Haemophilia 2010; 16: 495-501.
33. Solovieva S. Clinical severity of disease, functional disability and health-related quality of life. Three-year follow-up study of 150 Finnish patients with coagulation disorders. Haemophilia 2001; 7: 53-63.
34. WHO Scientific Group on the Burden of Musculoskeletal Conditions at the Start of the New Millennium. The burden of musculoskeletal conditions at the start of the new millennium. Report of a WHO Study Group. World Health Organ Tech Rep Ser 2003; 919: i-x: 1-218.
35. Djulbegovic BGG, Vaughn D. Comparison of quality of life between HIV-positive haemophilia patients and HIV-negative haemophilia patients. Haemophilia 1996; 2: 166-72.
36. Khawaji M, Akesson K, Berntorp E. Long-term prophylaxis in severe haemophilia seems to preserve bone mineral density. Haemophilia 2009; 15: 261-6.
37. Nair AP, Jijina F, Ghosh K, Madkaikar M, Shrikhande M, Nema M. Osteoporosis in young haemophiliacs from western India. Am J Hematol 2007; 82: 453-7.