Publications

Haemo-QoL Paper (Acrobat Reader required)

  1. Bullinger, M., v. Mackensen, S., Fischer, K., Khair, K., Petersen, C., Ravens-Sieberer, U., Roccino, A., Sagnier, P., Tusell, J., van den Berg, M. & Vicariot, M.:
    Pilot testing of the Haemo-QoL quality of life questionnaire for haemophiliac children in six European Countries.
    Haemophilia, Vol.8, Suppl. 2, 47-54 (2002)

  2. Bullinger, M., v. Mackensen, S. and the Haemo-QoL Group:
    Quality of life in Children and Families with bleeding disorders.
    Journal of Pediatric Haematology and Oncology, Vol.25, Suppl. 1, 64-67 (2003)

  3. v. Mackensen, S., Bullinger, M., and the Haemo-QoL Group:
    Development and Testing of an Instrument to assess the Quality of Life of Children with Haemophilia (Haemo-QoL),
    Haemophilia, Vol.10, Suppl. 1, 17-25 (2004)

  4. A. Gringeri, S. von Mackensen, G. Auerswald, M. Bullinger, R. Perez Garrido, E. Kellermann, K. Khair, H. Lenk, M. Vicariot, A. Villar and C. Wermes For The Haemo-Qol study
    Health status and health-related quality of life of children with haemophilia from six West European countries
    Haemophilia,Vol.10, Suppl. 1, 26–33 (2004)

  5. Bullinger, M., v. Mackensen, S.
    Quality of life assessment in haemophilia.
    Haemophilia, Vol.10, Suppl. 1, 9–16 (2004)

  6. Remor, E., Young, NL., v. Mackensen, S. & Lopatina, EG:
    Disease-specific quality of life measurment tools for haemophilia patients.
    Haemophilia, Vol.10, Suppl. 4, 30-34 (2004)

  7. Pollak, E., Mühlan, H., v. Mackensen, S., Bullinger, M. & the Haemo-QoL Group:
    The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia.
    Haemophilia, Vol.12, Suppl. 4, 384-392 (2006)

  8. Bradley, C.S., Bullinger, M., McCusker, P.J., Wakefield, C.D., Blanchette, V.S., Young, N.L.:
    Comparing two measures of quality of life for children with haemophilia: the CHO-KLAT and the Haemo-QoL.
    Haemophilia, 12:643-53 (2006). Pdf

  9. Bullinger, M., von Mackensen, S.:
    Psychosocial determinants of quality of life in children and adolescents with haemophilia – a cross-cultural approach.
    Clinical Psychology and Psychotherapy, Volume 15, Issue 3: 164–172 (2008)

  10. Gringeri A., von Mackensen S.:
    Quality of life in haemophilia.
    Haemophilia. 2008 Jul;14 Suppl 3:19-25.

  11. Bullinger, M., Globe, D., Wasserman, J., Young, N.L., 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(5):808-20.

  12. Globe, D., Young, N.L., von Mackensen, S., Bullinger, M., Wasserman, J. on behalf of the Health Related Quality of Life Expert Working Group of the International Prophylaxis Study Group (IPSG).
    Measuring Patient-Reported Outcomes in Haemophilia Clinical Research.
    Haemophilia, 2009 Jul;15(4):843-52.

  13. Riva, S., Bullinger, M., Amman, E., von Mackensen, S.:
    Content Comparison of Haemophilia Specific Patient-Rated Outcome Measures With the International Classification of Functioning, Disability and Health (ICF, ICF-CY).
    Health and Quality of Life Outcomes 2010, 8:139 (25 November 2010)

  14. Gringeri, A., Lundin, B., von Mackensen S., Mantovani, L., Mannucci, PM.; and the ESPRIT Study Group:
    A randomized Clinical Trial of Prophylaxis in children with Hemophilia A (the ESPRIT Study).
    J Thromb Haemost. 2011 Apr; 9(4):700-10.

  15. Tantawy, A.A., von Mackensen, S., El-Laboudy, M.A, Labib, J.H., Moftah, F., El-Telbany, M.A., Mansour, WA.
    Health-Related Quality of Life in Egyptian Childen and Adolescents with Hemophilia A.
    Pediatr Hematol Oncol. 2011 Apr;28(3):222-9.

  16. Krasuska, M., Riva, S., Fava, L., von Mackensen, S. & Bullinger, M.
    Linking Quality of life measures with the ICF/ICF-CY in chronic health conditions: the example of young people with haemophilia.
    Am J Phys Med Rehabil. 2012 Feb;91(13 Suppl 1):S74-83
  17. Khair, K., Littley, A., Will, A. & von Mackensen, S. for the EIS Study Group.
    The impact of sport on children with haemophilia.
    Haemophilia 2012;18(6):898-905.

  18. DeKoven, M, Wisniewski, T, Petrilla, A, Holot, N, Lee, WC, Cooper, DL & von Mackensen S.
    Health-Related Quality of Life in Hemophilia Patients with Inhibitors and Their Caregivers.
    Haemophilia 2013;19(2):287-93.

  19. von Mackensen, S., Gil Campos, I., Acquadro, C. & Strandberg-Larsen, M.
    Cross-cultural adaptation and Linguistic Validation of age-group specific haemophilia patient-reported outcome (PRO) instruments for patients and parents.
    Haemophilia 2013;19(2):e73-83.

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