Haemophilia Experiences, Results and Opportunities (HERO) Study: Survey methodology and population demographics

Haemophilia

Volumn 20, Issue 1, 2014, Pages 44-51

  Forsyth, A L ^a   Gregory, M ^b   Nugent, D ^c   Garrido, C ^d   Pilgaard, T ^e   Cooper, D L ^f   Iorio, A ^g  

^a RUSH UNIVERSITY MEDICAL CENTER   (United States)

^b Haemophilia Society   (United Kingdom)

^c CHILDREN S HOSPITAL OF ORANGE COUNTY   (United States)

^d Asociacion Venezolana para la Hemofilia   (Venezuela)

^e NOVO NORDISK A S   (Denmark)

^f NOVO NORDISK INC   (United States)

^g MCMASTER UNIVERSITY   (Canada)

Author keywords

Haemophilia; Health related quality of life; Psychosocial

Indexed keywords

ADULT; AGED; ARTHRITIS; ARTICLE; EDUCATIONAL STATUS; FEMALE; HEALTH SURVEY; HEMARTHROSIS; HEMOPHILIA; HEMOPHILIA A; HEMOPHILIA B; HEPATITIS C; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INTIMACY; MAJOR CLINICAL STUDY; MALE; MIDDLE AGED; PRIORITY JOURNAL; QUALITY OF LIFE; YOUNG ADULT;

HAEMOPHILIA; HEALTH-RELATED QUALITY OF LIFE; PSYCHOSOCIAL;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; COMORBIDITY; HEALTH SURVEYS; HEMOPHILIA A; HEMOPHILIA B; HUMANS; INTERNET; MIDDLE AGED; QUALITY OF LIFE; QUESTIONNAIRES; WORLD HEALTH; YOUNG ADULT;

EID: 84890857187     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/hae.12239     Document Type: Article

References (22)

1. Cassis FR, Querol F, Forsyth A et al. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia 2012; 18: e101.
2. Hartl HK, Reitter S, Eidher U et al. The impact of severe haemophilia on the social status and quality of life among Austrian haemophiliacs. Haemophilia 2008; 14: 703.
3. Plug I, Peters M, Mauser-Bunschoten EP et al. Social participation of patients with hemophilia in the Netherlands. Blood 2008; 111: 1811.
4. Wiedebusch S, Pollmann H, Siegmund B et al. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia 2008; 14: 1014.
5. Windyga J, Stefanska E, Lopaciuk S et al. The orthopaedic status of a selected severe haemophilia group. Pol Arch Med Wewn 2005; 113: 562.
6. The EuroQol Group. EuroQol-a new facility for the measurement of health-related quality of life. Health Policy 1990; 16: 199.
7. Health PRUWCCiM. WHO (Five) Well-Being Index. 1998. Available at http://www.cure4you.dk/354/WHO-5_English.pdf.
8. Rosen RC, Catania J, Pollack L et al. Male Sexual Health Questionnaire (MSHQ): scale development and psychometric validation. Urology 2004; 64: 777.
9. Anderson A, Forsyth A. Playing It Safe: Bleeding Disorders, Sports and Exercises. New York, NY: National Hemophilia Foundation, 2005.
10. Buxbaum NP, Ponce M, Saidi P et al. Psychosocial correlates of physical activity in adolescents with haemophilia. Haemophilia 2010; 16: 656.
11. Stieltjes N, Torchet MF, Misrahi L et al. Epidemiological survey of haemophiliacs with inhibitors in France: orthopaedic status, quality of life and cost-the 'Statut Orthopedique des Patients Hemophiles' avec Inhibiteur study. Blood Coagul Fibrinolysis 2009; 20: 4.
12. Talaulikar D, Shadbolt B, McDonald A et al. Health-related quality of life in chronic coagulation disorders. Haemophilia 2006; 12: 633.
13. Tedgård U, Ljung R, Bullinger M et al. Quality of life in haemophilia carriers - preliminary results of the ESCHQoL study. Haemophilia 2008; 14(Suppl. 2): 150. (Abstract 29 FP05).
14. Schramm W, Royal S, Kroner B et al. Clinical outcomes and resource utilization associated with haemophilia care in Europe. Haemophilia 2002; 8: 33.
15. Elander J, Robinson G, Mitchell K et al. An assessment of the relative influence of pain coping, negative thoughts about pain, and pain acceptance on health-related quality of life among people with hemophilia. Pain 2009; 145: 169.
16. Bordeaux JD, Loveland KA, Lachar D et al. Hemophilia Growth and Development Study: caregiver report of youth and family adjustment to HIV disease and immunologic compromise. J Pediatr Psychol 2003; 28: 175.
17. Barlow JH, Stapley J, Ellard DR et al. Information and self-management needs of people living with bleeding disorders: a survey. Haemophilia 2007; 13: 264.
18. von Mackensen S, Bullinger M. Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL). Haemophilia 2004; 10(Suppl. 1): 17.
19. Gouw SC, van der Bom JG, Marijke van den Berg H. Treatment-related risk factors of inhibitor development in previously untreated patients with hemophilia A: the CANAL cohort study. Blood 2007; 109: 4648.
20. Collection CfDC-UD. Summary Report of UDC Activity: National Treatment/Clinical Characteristics (Hemophilia). 2011. Available at https://www2a.cdc.gov/ncbddd/htcweb/UDC_Report/UDC_view1.asp?para1=NATION¶2=TREATH¶3=&ScreenWidth=1920&ScreenHeight=1080. Accessed January 31, 2011.
21. World Federation of Hemophilia. World Federation of Hemophilia Report on the Annual Global Survey 2010. Montreal, Canada: WFH, 2011.
22. Fransen van de Putte DE, Fischer K, Pulles AE et al. Non-fatal cardiovascular disease, malignancies, and other co-morbidity in adult haemophilia patients. Thromb Res 2012; 130: 157.