| CONGRESS PRESENTATIONS AND PUBLICATIONS |
| Haemo-QoL Presentations |
| 1) |
v. Mackensen, S., Bullinger,
M., Ravens-Sieberer, U.:
Entwicklung und Testung eines krankheitsspezifischen Fragebogens
(Hämo-QoL) zur Erfassung
der gesundheitsbezogenen Lebensqualität von Kindern mit Hämophilie
(oral presentation).
13. Kongreß der Deutschen Gesellschaft für Medizinische Psychologie,
Aachen, 15. - 17. Juni 2000 |
| 2) |
v. Mackensen, S., Bullinger,
M. & Ravens-Sieberer, U.:
Quality of Life in Children with Hemophilia (oral presentation).
Hemophilia 2000 World Congress,
Montreal, Canada, 16. - 21. Juli 2000 |
| 3) |
v. Mackensen, S., Bullinger,
M., Ravens-Sieberer, U. & Negrini, C.:
Health-Related Quality of Life in Children and Adolescents with
Hemophilia.
Development of the new Haemo-QoL Questionnaire (oral presentation).
Hemophilia 2000 World Congress,
Montreal, Canada, 16. - 21. Juli 2000 |
| 4) |
v. Mackensen, S., Bullinger,
M. & Ravens-Sieberer, U.:
Development of the Haemo-QoL Questionnaire for the Assessment
of Quality of Life
in Children with Hemophilia and Implications for South America
(oral presentation).
Hemophilia 2000 World Congress,
Montreal, Canada, 16. - 21. Juli 2000 |
| 5) |
v. Mackensen, S., Bullinger,
M., Negrini, C., Ravens-Sieberer, U. & Petersen, C.:
Quality of Life of Children with Hemophilia and their Families
- A European Assessment Approach (poster presentation).
XXVII International Congress of Psychology,
Stockholm, Schweden, 23. - 28. Juli 2000 |
| 6) |
v. Mackensen, S., Bullinger,
M., Ravens-Sieberer, U., Negrini, C., Petersen, C.:
Der Hämo-QoL Fragebogen - Entwicklung und Testung eines neuen
krankheitsspezifischen Fragebogens
zur Erfassung der gesundheitsbezogenen Lebensqualität von Kindern
mit Hämophilie (poster presentation).
42. Kongreß der Deutschen Gesellschaft für Psychologie,
Jena, 24. - 28. September 2000 |
| 7) |
v. Mackensen, S., Bullinger,
M., Ravens-Sieberer, U. & Negrini, C.:
Development of the Haemo-QoL Questionnaire for the Assessment
of Health-Related Quality of Life
in Children with Haemophilia (poster presentation).
7th Annual Conference of International Society for Quality of Life Research,
Vancouver, Canada, 29. - 31. Oktober 2000 |
| 8) |
Petersen, C., Bullinger,
M. & v. Mackensen, S.:
European Approach to measure Quality of Life in Children with
Haemophilia (oral presentation).
7th European Congress of Research in Rehabilitation,
Madrid, 1. - 5. April, 2001 |
| 9) |
v. Mackensen, S.:
Health-realted quality of life in Children with Haemophilia. How
Children cope with their disease.
(oral presentation). Haemostasis and Vascular Medicine: Guidelines and
Perspectives (World Heart Federation)
Neapel, 14. - 17. Mai 2001 |
| 10) |
v. Mackensen, S., Bullinger,
M. & Ravens-Sieberer, U.:
Assessment of health-related Quality of Life (HRQOL) in Children
with Haemophilia
with a first diesease-specific questionnaire (HAEMO-QoL) (poster
presentation).
European Society for Paediatric Haematology and Immunology, ESPHI Congress
2001
Luzern, 17. - 19. Juni 2001 |
| 11) |
v. Mackensen, S., Bullinger,
M. & Ravens-Sieberer, U.:
Quality of Life of Children and Adolescents with Haemophilia
(oral presentation).
6th Meeting of the European Haematology Association, EHA
Frankfurt, 21. - 24. Juni 2001 |
| 12) |
v. Mackensen, S., Bullinger,
M. & Ravens-Sieberer, U.:
How Children and Adolescents with Haemophilia assess their health-realted
Quality of Life - Development
of a new disease-specific Questionnaire (Haemo-QoL) (poster
presentation).
XVIII Congress of the International Society on Thrombosis and Haemostasis,
Paris, 6. - 12. Juli 2001 |
| 13) |
v. Mackensen, S., Bullinger,
M. Ravens-Sieberer, U.:
Development of a new disease-specific questionnaire for children
with Haemophilia (HAEMO-QoL)(poster presentation).
European Health Psychology Socienty, EHPS,
St. Andrews, Schottland, 5 . - 8. September 2001 |
| 14) |
v. Mackensen, S.:
How children cope with haemophilia (oral presentation).
"5th Workshop of the European Paediatric Network for Haemophilia
Management",
S'Agaro, Girona, Spanien, 20. - 22. September 2001 |
| 15) |
v. Mackensen, S.:
Quality of life in children with haemophilia. Assessment with
a disease-specific questionnaire
(oral presentation).
"5th Workshop of the European Paediatric Network for Haemophilia
Management",
S'Agaro, Girona, Spanien, 21. - 22. September 2001 |
| 16) |
v. Mackensen, S., Gringeri,
A. & Bullinger, M. for the Haemo-Qol Investigators Group:
Health-Related Quality of Life in Children with Haemophilia
(oral presentation).
XVII Congresso Nazionale S.I.S.E.T.
Rome, 9. - 12. Mai 2002 |
| 17) |
v. Mackensen, S., Bullinger
& M. for the Haemo-QoL Investigators Group:
Quality of Life in Children with Haemophilia. An European Assessment
Approach (oral presentation).
XXV. International Congress of the World Federation of Hemophilia,
Sevilla, 19. - 24. Mai 2002 |
| 18) |
v. Mackensen, S., Bullinger
& M. for the Haemo-QoL Investigators Group:
How Children and Adolescents cope with Haemophilia
(poster presentation).
XXV. International Congress of the World Federation of Hemophilia,
Sevilla, 19. - 24. Mai 2002 |
| 19) |
v. Mackensen, S., Bullinger
& M. for the Haemo-QoL Investigators Group:
Health-Related Quality of Life in Haemophilic Children and Adolescents.
An European assessment
Approach with the HAEMO-QoL questionnaire (poster presentation).
7th Congress of the European Haematology Association, EHA
Florenz, 6. - 9. Juni 2002 |
| 20) |
v. Mackensen, S.:
Haemo-QoL quality of life questionnaire for haemophilic children in
Europe (oral presentation).
CDC Meeting "Health-related
quality of life for persons with bleeding and clotting disorders",
Atlanta, 19. Juni 2002 |
| 21) |
v. Mackensen, S., Bullinger,
M. and the Haemo-QoL Investigators Group:
Validation of the first haemophilia-specific quality of life questionnaire
for children
and adolescents (Haemo-QoL) (oral presentation).
XI Convegno Triennale sull'Emofilia,
Mailand, 7. - 10. November 2002 |
| 22) |
v. Mackensen, S., Bullinger,
M. & the Haemo-QoL Group:
Validation of the first disease-specific quality of life questionnaire
(Haemo-QoL)
for haemophilic chidren (oral presentation).
8th
EHA Congress of the European Hematology Association,
Lyon, 12.-15. June 2003 |
| 23) |
v. Mackensen, S.:
The assessment of Quality of Life in haemophilic children with
a validated
disease-specific questionnaire (Haemo-QoL) (oral presentation).
Birmingham, 26. June 2003 |
| 24) |
v. Mackensen, S., Bullinger,
M. & the Haemo-QoL Group:
Validation of the first haemophilia-specific quality of life questionnaire
for
children and adolescents (Haemo-QoL) (poster presentation).
XIX Congress of ISTH (The International Society on Thrombosis and Haemostasis),
Birmingham, 12.-17. July 2003 |
| 25) |
Bullinger M.& v. Mackensen,
S.:
Health related quality of life assessment in the haemophilia population (oral presentation).
XIX Congress of ISTH (The International Society on Thrombosis and Haemostasis),
Birmingham, 12.-17. July 2003 |
| 26) |
v. Mackensen, S.:
Quality of Life in Haemophilia (oral presentation).
British Society for Haematology Annual Scientific Meeting
Cardiff, U.K. 19. -21. April 2004 |
| 27) |
v. Mackensen, S.:
Quality
of Life Assessment in haemophilia and its Importance (oral presentation):
III. NovoSeven Symposium on Hemophilia and Inhibitors
Costa do Sauipe, Brazil, 27. Ð 29. August 2004 |
| 28) |
v. Mackensen, S.:
Quality
of Life Assessment in Haemophilic Patients on Prophylaxis (oral presentation):
10th International Symposium on Thrombosis and Haemostasis
Porto, Portugal, 30. September – 1. Oktober, 2004 |
| 29) |
Schmidt, S., v. Mackensen,
S., Muehlan, H., Pollak, E., Bullinger, M. and the
Haemo-QoL Group.:
Developing short forms from full forms for disease specific modules
in paediatric quality of life research: The Haemo-Qol experience
(oral presentation):
11th Annual Scientific ISOQOL Conference
Hongkong, 16. – 19. Oktober 2004 |
| 30) |
v. Mackensen, S.:
The Haemo-QoL assessment measure for children and adolescents (oral presentation).
WFH Haemophilia World Congress
Bangkok, 17.-21. Oktober 2004 |
| 31) |
v. Mackensen, S.:
Quality of life in patients with haemophilia – Does prophylaxis
have an impact? (oral presentation).
National Congress and the IVV Latinamerican Meeting of Hematology, Immunology
and Transfusion Medicine.
Havanna, Cuba, 16. – 20. May, 2005 |
| 32) |
v. Mackensen, S.:
Quality of Life Assessment in Children and Adolescents with Bleeding Disorders (oral presentation).
5th Annual Meeting of the Egyptian Society of Pediatric Hematology and Oncology (ESPHO)
Cairo, Egypt, 28.-30. March, 2007 |
| 33) |
v. Mackensen, S.:
Quality of Life in haemophilic children (oral presentation).
XX EHC Conference
Parma, 18.-20. May, 2007 |
| 34) |
Chevallet, L., Weatherall, J. & von Mackensen, S.:
Linguistic Validation of the Haemo-QoL and Haem-A-QoL for Use in International Studies (poster presentation).
ISPOR 13th Annual International Meeting
Toronto, 3.-7. May, 2008 |
