Health-related quality of life and psychological well-being in elderly patients with haemophilia

Haemophilia

Volumn 18, Issue 3, 2012, Pages 345-352

  Von Mackensen, S ^a,b   Gringeri, A ^c   Siboni, S M ^b   Mannucci, P M ^b  

^a UNIVERSITY OF HAMBURG   (Germany)

^b FONDAZIONE IRCCS CA GRANDA OSPEDALE MAGGIORE POLICLINICO   (Italy)

^c UNIVERSITY OF MILAN   (Italy)

Author keywords

Ageing; Cognitive status; Daily autonomy; Haemophilia; Health related quality of life; Physical functioning

Indexed keywords

AGED; ARTHROPATHY; ARTICLE; CARDIOVASCULAR DISEASE; CLINICAL ARTICLE; COGNITION; CONTROLLED STUDY; DEPRESSION; FEMALE; GERIATRIC PATIENT; HAEM A QOL ELDERLY QUESTIONNAIRE; HEMOPHILIA A; HEMOPHILIA B; HUMAN; HYPERCHOLESTEROLEMIA; HYPERTENSION; LEISURE; MALE; PHYSICAL ACTIVITY; PHYSICAL PERFORMANCE; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; PSYCHOMETRY; QUALITY OF LIFE; QUESTIONNAIRE; VALIDATION STUDY; VIRUS INFECTION;

ACTIVITIES OF DAILY LIVING; AGED; CASE-CONTROL STUDIES; COMORBIDITY; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH STATUS; HEMOPHILIA A; HEMOPHILIA B; HUMANS; ITALY; MALE; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; RETROSPECTIVE STUDIES;

EID: 84860338089     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/j.1365-2516.2011.02643.x     Document Type: Article

References (40)

1. Plug I, Van Der Bom JG, Peters M et al. Mortality and causes of death in patients with haemophilia, 1992-2001: a prospective cohort study. J Thromb Haemost 2006; 4: 510-6.
2. Soucie JM, Nuss R, Evatt B et al. Mortality among males with haemophilia: relations with source of medical care. The Haemophilia Surveillance System Project Investigators. Blood 2000; 96: 437-42.
3. Franchini M, Tagliaferri A, Mannucci PM. The management of haemophilia in elderly patients. Clin Interv Aging 2007; 2: 361-8.
4. Darby SC, Ewart DW, Giangrande PL, Dolin PJ, Spooner RJ, Rizza CR. Mortality before and after HIV infection in the complete UK population of haemophiliacs. UK Haemophilia Centre Directors' Organisation. Nature 1995; 377: 79-82.
5. Darby SC, Ewart DW, Giangrande PL et al. Mortality from liver cancer and liver disease in haemophilic men and boys in UK given blood products contaminated with hepatitis C. UK Haemophilia Centre Directors' Organisation. Lancet 1997; 350: 1425-31.
6. Chorba TL, Holman RC, Strine TW, Clarke MJ, Evatt BL. Changes in longevity and causes of death among persons with haemophilia A. Am J Hematol 1994; 45: 112-21.
7. Darby SC, Kan SW, Spooner RJ et al. Mortality rates, life expectancy, and causes of death in people with haemophilia A or B in the United Kingdom who were not infected with HIV. Blood 2007; 110: 815-25.
8. Konkle BA, Kessler C, Aledort L et al. Emerging clinical concerns in the ageing haemophilia patient. Haemophilia 2009; 15: 1197-209.
9. Philipp C. The aging patient with hemophilia: complications, comorbidities, and management issues. Hematology Am Soc Hematol Educ Program 2010; 2010: 191-6.
10. Yesavage JA. Depression in the elderly. How to recognize masked symptoms and choose appropriate therapy. Postgrad Med 1992; 91: 255-8, 261.
11. Steffens DC, Otey E, Alexopoulos GS et al. Perspectives on depression, mild cognitive impairment, and cognitive decline. Arch Gen Psychiatry 2006; 63: 130-8.
12. Street A, Hill K, Sussex B, Warner M, Scully MF. Haemophilia and ageing. Haemophilia 2006; 12(Suppl. 3): 8-12.
13. Otero-Rodríguez A, León-Muñoz LM, Balboa-Castillo T, Banegas JR, Rodríguez-Artalejo F, Guallar-Castillón P. Change in health-related quality of life as a predictor of mortality in the older adults. Qual Life Res 2010; 19: 15-23.
14. von Mackensen S, Gringeri A. Quality of life in hemophilia. In: Lee Christine A, Berntorp Erik E, Hoots W Keith eds. Textbook of Hemophilia, 2nd edn. Oxford UK: Blackwell Publishing Ltd., 2010: 401-8.
15. Szende A, Schramm W, Flood E et al. Health-related quality of life assessment in adult haemophilia patients: a systematic review and evaluation of instruments. Haemophilia 2003; 9: 678-87.
16. Fischer K, van der Bom JG, van den Berg HM. Health-related quality of life as outcome parameter in haemophilia treatment. Haemophilia 2003; 9(Suppl. 1): 75-82.
17. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993; 118: 622-9.
18. Bullinger M, Globe D, Wasserman J, Young NL, von Mackensen S. Challenges of patient-reported outcome assessment in hemophilia care - a state of the art review. Value Health 2009; 12: 808-20.
19. Zaninotto P, Falaschetti E, Sacker A. Age trajectories of quality of life among older adults: results from the English Longitudinal Study of Ageing. Qual Life Res 2009; 18: 1301-9.
20. Winkler I, Buyantugs L, Petscheleit A, Kilian R, Angermeyer MC, The WHOQOL-OLD Group. Die interkulturelle Erfassung der Lebensqualität im Alter: Das WHOQOL-OLD-Projekt. Zeitschrift für Gerontopsychologie & Psychiatrie 2003; 16: 177-92.
21. Power MJ, Kuyken W, On behalf of the WHOQOL Group. The World Health Organization Quality of Life assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998; 46: 1569-85.
22. Skevington SM, Lotfy M, O'Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res 2004; 13: 299-310.
23. 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, Vol. 3, Chapter 12. Heidelberg: Springer, 2009: 1895-920.
24. von Mackensen S, Gringeri A, Santoni L et al. Development and pilot testing of a disease-specific quality of life questionnaire for adult patients with haemophilia (Haem-A-QoL). Blood 2004; 104: 2214 (Abstract).
25. Siboni SM, Mannucci PM, Gringeri A et al. Health status and quality of life in elderly persons with severe hemophilia born before the advent of regular replacement therapy: a case control study. J Thromb Haemost 2009; 7: 780-6.
26. Gilbert MS. Prophylaxis. Muscoloskeletal evaluation. Semin Hematol 1993; 30: 3-6.
27. Kempen GI, Myers AM, Powell LE. Hierarchical structure in ADL and IADL: analytical assumptions and applications for clinicians and researchers. J Clin Epidemiol 1995; 48: 1299-305.
28. Tinetti ME. Performance-oriented assessment of mobility problems in elderly patients. J Am Geriatr Soc 1986; 34: 119-26.
29. Folstein MF, Folstein SE, McHugh PR. 'Mini-mental state'. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 189-98.
30. Yesavage JA, Brink TL, Rose TL et al. Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res 19821983; 17: 37-49.
31. EuroQol-a new facility for the measurement of health-related quality of life. The EuroQol Group Health Policy 1990; 16: 199-208.
32. De Girolamo G, Rucci P, Scocco P et al. La valutazione della qualitá della vita, validazione del WHOQoL-Breve. Epidemiol Psychiatr Soc 2000; 9: 45-55.
33. Iorio A, Oliovecchio E, Morfini M, Mannucci PM. Association of Italian Haemophilia Centres Directors. Italian Registry of Haemophilia and Allied Disorders. Objectives, methodology and data analysis. Haemophilia 2008; 14: 444-53.
34. Salvi F, Miller MD, Grilli A et al. A manual of guidelines to score the modified cumulative illness rating scale and its validation in acute hospitalized elderly patients. J Am Gereatr Soc 2008; 56: 1926-31.
35. Mauser-Bunschoten EP, Fransen Van De Putte DE, Schutgens RE. Co-morbidity in the ageing haemophilia patient: the down side of increased life expectancy. Haemophilia 2009; 15: 853-63.
36. Ragni MV. Aging in haemophilia: getting to the heart of the matter. Thromb Haemost 2011; 105: 207-8.
37. Forsyth AL, Quon DV, Konkle BA. Role of exercise and physical activity on haemophilic arthropathy, fall prevention and osteoporosis. Haemophilia 2011; 17: e870-6.
38. Bar-Chama N, Snyder S, Aledort L. Sexual evaluation and treatment of ageing males with haemophilia. Haemophilia 2011; doi:
39. Dolan G. The challenge of an ageing haemophilic population. Haemophilia 2010; 16(Suppl. 5): 11-6.
40. Franchini M, Mannucci PM. Co-morbidities and quality of life in elderly persons with haemophilia. Br J Haematol 2010; 148: 522-33.