Quality of life in women with bleeding disorders

Haemophilia

Volumn 17, Issue SUPPL. 1, 2011, Pages 33-37

  Von Mackensen, S ^a  

^a UNIVERSITY MEDICAL CENTER HAMBURG EPPENDORF   (Germany)

Author keywords

Assessment; Bleeding disorders; Quality of life; Questionnaires; Von Willebrand; Women

Indexed keywords

ARTICLE; BLEEDING DISORDER; EPISTAXIS; FAMILY; FEMALE; GASTROINTESTINAL HEMORRHAGE; GENETIC DISORDER; HEMATOMA; HEMOSTASIS; HUMAN; MENORRHAGIA; PAIN; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; SOCIAL INTERACTION; THROMBOCYTE DYSFUNCTION; VON WILLEBRAND DISEASE; WELLBEING; WOMEN'S HEALTH;

ADOLESCENT; ADULT; AGED; FEMALE; GREAT BRITAIN; HEALTH STATUS; HEALTH STATUS INDICATORS; HUMANS; MENORRHAGIA; MIDDLE AGED; QUALITY OF LIFE; QUESTIONNAIRES; VON WILLEBRAND DISEASES; YOUNG ADULT;

EID: 79959564999     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/j.1365-2516.2011.02563.x     Document Type: Article

References (36)

1. Cella DF, Tulsky DS. Measuring quality of life today: methodological aspects. Oncology 1990; 4: 29-38. Discussion 69.
2. Bowling A. Measuring Disease. A Review of Disease-Specific Quality of Life Measurement Scales. Philadelphia: Open University Press, 1995.
3. Bullinger M. Quality of life-definition, conceptualization and implications - a methodologists view. Theor Surg 1991; 6: 143-9.
4. Orley J. The WHOQOL-Group. The development of the WHO quality of life assessment instruments (The WHOQOL). In: Orley J, Kuyken W eds. Quality of Life Assessment. International Perspectives. Berlin: Springer Verlag, 1994: 41-57.
5. Bottomley A, Jones D, Claassens L. Patient-reported outcomes: assessment and current perspectives of the guidelines of the Food and Drug Administration and the reflection paper of the European Medicines Agency. Eur J Cancer 2009; 45: 347-53.
6. Bowling A. Measuring Health. A Review of Quality of Life Measurement Scales. Berkshire: Open University Press, 2005.
7. Sadler JE, Mannucci PM, Berntorp E et al. Impact, diagnosis and treatment of von Willebrand disease. Thromb Haemost 2000; 84: 160-74.
8. Ahuja SP, Hertweck SP. Overview of bleeding disorders in adolescent females with menorrhagia. J Pediatr Adolesc Gynecol 2010; 23(6 Suppl): S15-21. Review.
9. Kadir RA, Edlund M, von Mackensen S. The impact of menstrual disorders on quality of life in women with inherited bleeding disorders. Haemophilia 2010; 16: 832-9.
10. James AH. More than menorrhagia: a review of the obstetric and gynaecological manifestations of bleeding disorders. Haemophilia 2005; 11: 295.
11. López JA, Andrews RK, Afshar-Kharghan V et al. Bernard-Soulier syndrome. Blood 1998; 91: 4397.
12. George JN, Caen JP, Nurden AT. Glanzmann's thrombasthenia: the spectrum of clinical disease. Blood 1990; 75: 1383.
13. Burrows RF, Ray JG, Burrows EA. Bleeding risk and reproductive capacity among patients with factor XIII deficiency: case presentation and review of the literature. Obstet Gynecol Surv 2000; 55: 103.
14. Lak M, Keihani M, Elahi F et al. Bleeding and thrombosis in 55 patients with inherited afibrinogenaemia. Br J Haematol 1999; 107: 204.
15. Shetty S, Madkaikar M, Nair S et al. Combined factor V and VIII deficiency in Indian population. Haemophilia 2000; 6: 504.
16. Scharrer I. Women with von Willebrand disease. Hamostaseologie 2004; 24: 44-59.
17. Shaw RW, Brickley MR, Evans L, Edwards MJ. Perceptions of women on the impact of menorrhagia on their health using multi-attribute utility assessment. Br J Obstet Gynaecol 1998; 105: 1155-9.
18. Matteson KA, Clark MA. Questioning our questions: do frequently asked questions adequately cover the aspects of women's lives most affected by abnormal uterine bleeding? Opinions of women with abnormal uterine bleeding participating in focus group diiscussions. Women Health 2010; 50: 195-211.
19. von Mackensen S, Moorthi C, Auerswald G. Assessment of health-related quality of life in VWD patients - results of the VWD-QOL pilot-study. Haemophilia 2010; 16(Suppl. 4): 139. Abstract 31P27.
20. Shankar M, Chi C, Kadir RA. Review of quality of life: menorrhagia in women with or without inherited bleeding disorders. Haemophilia 2008; 14: 15-20.
21. Jenkinson C, Coulter A, Wright L. Short form 36 (SF-36) health survey questionnaire: normative data for adults of working age. BMJ 1993; 306: 1437-40.
22. Kadir RA, Sabin CA, Pollard D, Lee CA, Economides DL. Quality of life during menstruation in patients with inherited bleeding disorders. Haemophilia 1998; 4: 836-41.
23. Kouides PA, Phatak PD, Burkart P et al. Gynaecological and obstetrical morbidity in women with type I von Willebrand disease: results of a patient survey. Haemophilia 2000; 6: 643-8.
24. Rubin G, Wortman M, Kouides PA. Endometrial ablation for von Willebrand disease-related menorrhagia - experience with seven cases. Haemophilia 2004; 10: 477-82.
25. 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.
26. Barr RD, Sek J, Horsman J et al. Health status and health-related quality of life associated with von Willebrand disease. Am J Hematol 2003; 73: 108-14.
27. Kirtava A, Drews C, Lally C, Dilley A, Evatt B. Medical, reproductive and psychosocial experiences of women diagnosed with von Willebrand's disease receiving care in haemophilia treatment centres: a case-control study. Haemophilia 2003; 9: 292-7.
28. El-Nashar SA, Hopkins MR, Barnes SA et al. Health-related quality of life and patient satisfaction after global endometrial ablation for menorrhagia in women with bleeding disorders: a follow-up survey and systematic review. Am J Obstet Gynecol 2010; 202: 348.e1-7. (Epub 2010 Jan 8).
29. de Wee EM, Mauser-Bunschoten EP, van der Bom JG et al. Health related quality of life among adult patients with moderate and severe von Willebrand disease. J Thromb Haemost 2010; 8: 1492-9.
30. Chi C, Pollard D, Tuddenham EG, Kadir RA. Menorrhagia in adolescents with inherited bleeding disorders. J Pediatr Adolesc Gynecol. 2010; 23: 215-22. (Epub 2010 May 14).
31. DE Wee EM, Fijnvandraat K, DE Goede-Bolder A et al. Impact of von Willebrand disease on health-related quality of life in a pediatric population. J Thromb Haemost 2011; 9: 502-9. doi.
32. Ruta DA, Garratt AM, Chadha YC, Flett GM, Hall MH, Russell IT. Assessment of patients with menorrhagia: how valid is a structured clinical history as a measure of health status? Qual Life Res 1995; 4: 33-40.
33. Bushnell DM, Martin ML, Moore KA, Richter HE, Rubin A, Patrick DL. Menorrhagia Impact Questionnaire: assessing the influence of heavy menstrual bleeding on quality of life. Curr Med Res Opin 2010; 26: 2745-55. (Epub 2010 Nov 3).
34. von Mackensen S, Federici A. Quality of life assessment in patients with von Willebrand's disease: development of a first disease-specific instrument (VWD-QOL). Poster presentation at the annual congress of the Society of Thrombosis and Haemostasis Research, Dresden, 21-25 February 2007, P 126.
35. Rosendaal FR, Smit C, Varekamp I et al. Modern haemophilia treatment: medical improvements and quality of life. J Intern Med 1990; 228: 663-40.
36. Bullinger M, Globe D, Wasserman J, Young NL, von Mackensen S, On behalf of the Health Related Quality of Life Expert Working Group of the International Prophylaxis Study Group (IPSG). Challenges of Patient-Reported Outcome Assessment in Haemophilia Care - a State of the Art Review. Value Health 2009; Jul-Aug; 12: 808-820. (In press).