Research ExplorerScientific StaffSylvia Mackensen von Astfeld Publications

PhD ID: 47951

Sylvia Mackensen von Astfeld

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Affiliations
ORCID: 0000-0002-5926-0478
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Publications

  1. 2023

  2. The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies

    Rambod, M., Pasyar, N., Irannejad Parizi, F., Edraki, M., Khair, K. & von Mackensen, S., 01.2023, In: HAEMOPHILIA. 29, 1, p. 199-209 11 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  3. 2021

  4. The effect of emicizumab prophylaxis on long-term, self-reported physical health in persons with haemophilia A without factor VIII inhibitors in the HAVEN 3 and HAVEN 4 studies

    Skinner, M. W., Négrier, C., Paz-Priel, I., Chebon, S., Jiménez-Yuste, V., Callaghan, M. U., Lehle, M., Niggli, M., Mahlangu, J., Shapiro, A., Shima, M., Campinha-Bacote, A., Levy, G. G., Oldenburg, J., von Mackensen, S. & Pipe, S. W., 09.2021, In: HAEMOPHILIA. 27, 5, p. 854-865 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  5. Clinical phenotype, fibrinogen supplementation and health-related quality of life in patients with afibrinogenemia

    Casini, A., von Mackensen, S., Santoro, C., Djambas Khayat, C., Belhani, M., Ross, C., Dorgalaleh, A., Naz, A., Unal, E., Abdelwahab, M., Dupuis Lozeron, E., Trillot, N., Susen, S., Peyvandi, F. & de Moerloose, P., 03.06.2021, In: BLOOD. 137, 22, p. 3127-3136 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  6. Health-related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors-A non-interventional study

    Oldenburg, J., Tran, H., Peyvandi, F., Núñez, R., Trask, P., Chebon, S., Mahlangu, J. N., Lehle, M., Jiménez-Yuste, V. & von Mackensen, S., 05.2021, In: HAEMOPHILIA. 27, 3, p. 398-407 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  7. Auswirkungen der COVID-19 Pandemie auf die medizinische Versorgung von Patienten mit angeborenen Blutungsneigungen

    Olivieri, M., Halimeh, S., Wermes, C., Hassenpflug, W., Holstein, K. & von Mackensen, S., 04.2021, In: GESUNDHEITSWESEN. 83, 4, p. 282-290 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  8. Cross-Sectional and Longitudinal Construct Validity of the Generic KINDL-A(dult)B(rief) Questionnaire in Adults with Thrombophilia or with Hereditary and Acquired Bleeding Disorders

    Neuner, B., von Mackensen, S., Kiesau, B., Krampe, H., McCarthy, W. J., Reinke, S., Kowalski, D., Shneyder, M., Clausnizer, H., Rocke, A., Junker, R. & Nowak-Göttl, U., 2021, In: ACTA HAEMATOL-BASEL. 144, 2, p. 166-175 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  9. 2020

  10. Evaluation of the U.S. Adherence Questionnaires VERITAS-PRO and VERITAS-PRN for Use in Patients with Hemophilia in the German Healthcare System

    von Mackensen, S., Douma, Y. & Halimeh, S., 12.2020, In: HAMOSTASEOLOGIE. 40, 5, p. 621-630 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  11. Health-Related Quality of Life, Treatment Satisfaction and Adherence Outcomes of Haemophilia Patients Living in a German Rural Region

    von Mackensen, S., Schleicher, C., Heine, S., Graf, N. & Eichler, H., 12.2020, In: HAMOSTASEOLOGIE. 40, 5, p. 631-641 11 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  12. Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company

    Hay, C. R. M., Shima, M., Makris, M., Jiménez-Yuste, V., Oldenburg, J., Fischer, K., Iorio, A., Skinner, M. W., Santagostino, E., von Mackensen, S. & Kessler, C. M., 11.2020, In: HAEMOPHILIA. 26, 6, p. 966-974 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  13. Determining meaningful health-related quality-of-life improvement in persons with haemophilia A using the Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL)

    von Mackensen, S., Catalani, O., Asikanius, E., Paz-Priel, I., Lehle, M. & Trask, P., 11.2020, In: HAEMOPHILIA. 26, 6, p. 1019-1030 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  14. Health-related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors-Results from the HAVEN 2 study

    Mancuso, M. E., Mahlangu, J., Sidonio, R., Trask, P., Uguen, M., Chang, T., Shima, M., Young, G., Oldenburg, J. & von Mackensen, S., 11.2020, In: HAEMOPHILIA. 26, 6, p. 1009-1018 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  15. Impact of COVID-19 pandemic on mental health of patients with inherited bleeding disorders in Germany

    von Mackensen, S., Halimeh, S., Siebert, M., Wermes, C., Hassenpflug, W., Holstein, K. & Olivieri, M., 11.2020, In: HAEMOPHILIA. 26, 6, p. e272-e281

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  16. Outcomes in children with hemophilia A with inhibitors: Results from a noninterventional study

    Oldenburg, J., Shima, M., Kruse-Jarres, R., Santagostino, E., Mahlangu, J., Lehle, M., Selak Bienz, N., Chebon, S., Asikanius, E., Trask, P., Mancuso, M. E., Jiménez-Yuste, V., von Mackensen, S. & Levy, G. G., 10.2020, In: PEDIATR BLOOD CANCER. 67, 10, p. e28474

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  17. BAY 81-8973 prophylaxis and pharmacokinetics in haemophilia A: Interim results from the TAURUS study

    Santoro, C., Fuh, B., Le, P. Q., Maes, P., Berrueco, R., Mingot-Castellano, E. M., von Mackensen, S., Solms, A. & Wang, M., 08.2020, In: EUR J HAEMATOL. 105, 2, p. 164-172 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  18. Cross-cultural adaptation and validation of Haem-A-QoL in Côte d'Ivoire

    Lambert, C., Meité, ND., Sanogo, I., Lobet, S., von Mackensen, S. & Hermans, C., 05.2020, In: HAEMOPHILIA. 26, 3, p. 459-466 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  19. Heavy menstrual bleeding in women with inherited bleeding disorders

    Djambas Khayat, C., Gouider, E., von Mackensen, S. & Abdul Kadir, R., 04.2020, In: HAEMOPHILIA. 26 Suppl 3, p. 16-19 4 p.

    Research output: SCORING: Contribution to journal › SCORING: Review article › Research

  20. Physical activity improved by adherence to prophylaxis in an Italian population of children, adolescents and adults with severe haemophilia A: the SHAPE Study

    Zanon, E., Tagliaferri, A., Pasca, S., Ettorre, C. P., Notarangelo, L. D., Biasioli, C., Aru, A. B., Milan, M., Linari, S., Rocino, A., Gagliano, F., Di Minno, G., Gamba, G., Santoro, R. C., Schinco, P., Marietta, M., Seuser, A. & von Mackensen, S., 03.2020, In: BLOOD TRANSFUS-ITALY. 18, 2, p. 152-158 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  21. 2019

  22. Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

    Myrin Westesson, L., Sparud-Lundin, C., Baghaei, F., Khair, K., von Mackensen, S., Acuña Mora, M. & Wallengren, C., 11.2019, In: J CLIN NURS. 28, 21-22, p. 4077-4086 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  23. Health-related quality of life and health status in persons with haemophilia A with inhibitors: A prospective, multicentre, non-interventional study (NIS)

    Mahlangu, J., Oldenburg, J., Callaghan, M. U., Shima, M., Mancuso, M. E., Trask, P., Recht, M., Garcia, C., Yang, R., Lehle, M., Macharia, H., Asikanius, E., Levy, G. G., Kruse-Jarres, R. & von Mackensen, S., 05.2019, In: HAEMOPHILIA. 25, 3, p. 382-391 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  24. The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

    Khair, K., Klukowska, A., Myrin Westesson, L., Kavakli, K., Escuriola, C., Uitslager, N., Santoro, C., Holland, M. & von Mackensen, S., 05.2019, In: HAEMOPHILIA. 25, 3, p. 416-423 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  25. The impact of psychosocial determinants on caregivers' burden of children with haemophilia (results of the BBC study)

    von Mackensen, S., Myrin Westesson, L., Kavakli, K., Klukowska, A., Escuriola, C., Uitslager, N., Santoro, C., Holland, M. & Khair, K., 05.2019, In: HAEMOPHILIA. 25, 3, p. 424-432 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  26. Impact of Adopting Population Pharmacokinetics for Tailoring Prophylaxis in Haemophilia A Patients: A Historically Controlled Observational Study

    Stemberger, M., Kallenbach, F., Schmit, E., McEneny-King, A., Germini, F., Yeung, C. H. T., Edginton, A. N., von Mackensen, S., Kurnik, K. & Iorio, A., 03.2019, In: THROMB HAEMOSTASIS. 119, 3, p. 368-376 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  27. Health-related quality of life in paediatric haemophilia B patients treated with rIX-FP

    von Mackensen, S., Shah, J., Seifert, W. & Kenet, G., 01.2019, In: HAEMOPHILIA. 25, 1, p. 45-53 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  28. The effect of emicizumab prophylaxis on health-related outcomes in persons with haemophilia A with inhibitors: HAVEN 1 Study

    Oldenburg, J., Mahlangu, J. N., Bujan, W., Trask, P., Callaghan, M. U., Young, G., Asikanius, E., Peyvandi, F., Santagostino, E., Kruse-Jarres, R., Negrier, C., Kessler, C., Xu, J., Windyga, J., Shima, M. & von Mackensen, S., 01.2019, In: HAEMOPHILIA. 25, 1, p. 33-44 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  29. Health-related quality-of-life and treatment satisfaction of individuals with hemophilia A treated with turoctocog alfa pegol (N8-GP): a new recombinant extended half-life FVIII

    Kearney, S., Raffini, L. J., Pham, T. P., Lee, X. Y., von Mackensen, S., Landorph, A., Takedani, H. & Oldenburg, J., 2019, In: PATIENT PREFER ADHER. 13, p. 497-513 17 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  30. 2018

  31. Validation of the Haemophilia & Exercise Project-Test-Questionnaire (HEP-Test-Q)-An instrument for the assessment of subjective physical functioning in children with haemophilia

    von Mackensen, S., Hilberg, T., Valentino, L. A., Kurnik, K. & Khair, K., 11.2018, In: HAEMOPHILIA. 24, 6, p. 888-895 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  32. Health-Related Quality of Life and Psychological Aspects of Adults With Hemophilia in Iran

    Rambod, M., Sharif, F., Molazem, Z., Khair, K. & von Mackensen, S., 10.2018, In: CLIN APPL THROMB-HEM. 24, 7, p. 1073-1081 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  33. The impact of bleeding disorders on the socioeconomic status of adult patients. Results of a comparative single centre cohort study

    Holstein, K., von Mackensen, S., Bokemeyer, C. & Langer, F., 10.08.2018, In: HAMOSTASEOLOGIE. 38, 3, p. 150-157 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  34. Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project

    Eichler, H., Schleicher, C., Heine, S., Graf, N. & von Mackensen, S., 08.2018, In: HAMOSTASEOLOGIE. 38, 3, p. 129-140 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  35. The multiple benefits of sport in haemophilia

    Farrugia, A., Gringeri, A. & von Mackensen, S., 05.2018, In: HAEMOPHILIA. 24, 3, p. 341-343 3 p.

    Research output: SCORING: Contribution to journal › Other (editorial matter etc.) › Research

  36. 2017

  37. Study of physical function in adolescents with haemophilia: The SO-FIT study

    Khair, K., Holland, M., Bladen, M., Griffioen, A., McLaughlin, P., von Mackensen, S. & SO-FIT Study Group, 11.2017, In: HAEMOPHILIA. 23, 6, p. 918-925

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  38. Haemophilia patients' unmet needs and their expectations of the new extended half-life factor concentrates

    von Mackensen, S., Kalnins, W., Krucker, J., Weiss, J., Miesbach, W., Albisetti, M., Pabinger, I. & Oldenburg, J., 07.2017, In: HAEMOPHILIA. 23, 4, p. 566-574 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  39. Measurement properties of the Haem-A-QoL in haemophilia clinical trials

    von Mackensen, S., Eldar-Lissai, A., Auguste, P., Krishnan, S., von Maltzahn, R., Yu, R. & Wyrwich, K. W., 05.2017, In: HAEMOPHILIA. 23, 3, p. 383-391 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  40. Choosing outcome assessment tools in haemophilia care and research: a multidisciplinary perspective

    Fischer, K., Poonnoose, P., Dunn, A. L., Babyn, P., Manco-Johnson, M. J., David, J. A., van der Net, J., Feldman, B., Berger, K., Carcao, M., de Kleijn, P., Silva, M., Hilliard, P., Doria, A., Srivastava, A., Blanchette, V. & participants of the International Symposium on Outcome Measures in Hemophilic Arthropathy, 01.2017, In: HAEMOPHILIA. 23, 1, p. 11-24

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  41. RCT - subjective physical performance and quality of life after a 6-month programmed sports therapy (PST) in patients with haemophilia

    Runkel, B., Von Mackensen, S. & Hilberg, T., 01.2017, In: HAEMOPHILIA. 23, 1, p. 144-151

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  42. Caregiver burden in haemophilia: Results from a single UK centre

    Khair, K. & von Mackensen, S., 2017, In: The Journal of Haemophilia Practice. 4, 1, p. 1-9

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  43. 2016

  44. Changes in health-related quality of life with treatment of longer-acting clotting factors: results in the A-LONG and B-LONG clinical studies

    Wyrwich, K. W., Krishnan, S., Auguste, P., Poon, J-L., von Maltzahn, R., Yu, R., Pierce, G. F., Mei, B., Mahlangu, J. & von Mackensen, S., 11.2016, In: HAEMOPHILIA. 22, 6, p. 866-872 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  45. The impact of social factors on outcomes in patients with bleeding disorders

    Holstein, K., von Mackensen, S., Bokemeyer, C. & Langer, F., 01.2016, In: HAEMOPHILIA. 22, 1, p. 46-53

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  46. The impact of sport on health status, psychological well-being and physical performance of adults with haemophilia

    von Mackensen, S., Harrington, C., Tuddenham, E., Littley, A., Will, A., Fareh, M., Hay, C. R. M. & Khair, K., 01.2016, In: HAEMOPHILIA. 22, 4, p. 521-30 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  47. Health-Related Quality of Life in Children and Adolescents with Hereditary Bleeding Disorders and in Children and Adolescents with Stroke: Cross-Sectional Comparison to Siblings and Peers

    Neuner, B., von Mackensen, S., Holzhauer, S., Funk, S., Klamroth, R., Kurnik, K., Krümpel, A., Halimeh, S., Reinke, S., Frühwald, M. & Nowak-Göttl, U., 2016, In: BIOMED RES INT . p. 1579428

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  48. 2015

  49. Validation of A New Hemophilia-Specific Burden Scale for Caregivers of Children With Hemophilia In The Us - The Hemophilia Associated Caregiver Burden Scale (Hemocabtm)

    von Mackensen, S., Wisniewski, T., Urgo, J. & Boggio, L., 11.2015, In: VALUE HEALTH. 18, 7, p. A674

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research

  50. Interpreting important health-related quality of life change using the Haem-A-QoL

    Wyrwich, K. W., Krishnan, S., Poon, J. L., Auguste, P., von Maltzahn, R., Yu, R. & von Mackensen, S., 09.2015, In: HAEMOPHILIA. 21, 5, p. 578-84 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  51. Health-related quality of life of partners of adults with haemophilia

    von Mackensen, S., Lindvall, K., Elmståhl, S. & Berntorp, E., 2015, In: The Journal of Haemophilia Practice. 2, 1, p. 20-26

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  52. 2014

  53. ITP-QoL questionnaire for children with immune thrombocytopenia: Italian version validation's

    Giordano, P., Lassandro, G., Giona, F., Jankovic, M., Nardi, M., Nobili, B., Notarangelo, L. D., Russo, G. & von Mackensen, S., 01.09.2014, In: PEDIATR HEMAT ONCOL. 31, 6, p. 534-47 14 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  54. Increased burden on caregivers of having a child with haemophilia complicated by inhibitors

    Lindvall, K., von Mackensen, S., Elmståhl, S., Khair, K., Stain, A. M., Ljung, R. & Berntorp, E., 01.04.2014, In: PEDIATR BLOOD CANCER. 61, 4, p. 706-711 6 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  55. Linguistic and psychometric validation of the MSSS-88 questionnaire for patients with multiple sclerosis and spasticity in Germany

    Henze, T., von Mackensen, S., Lehrieder, G., Zettl, U. K., Pfiffner, C. & Flachenecker, P., 01.01.2014, In: HEALTH QUAL LIFE OUT. 12, p. 119

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  56. 2013

  57. Cross-cultural adaptation and linguistic validation of age-group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents.

    Mackensen von, S., Campos, I. G., Acquadro, C. & Strandberg-Larsen, M., 2013, In: HAEMOPHILIA. 19, 2, p. 73-83 2.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  58. Haemophilia & Exercise Project (HEP): the impact of 1-year sports therapy programme on physical performance in adult haemophilia patients.

    Czepa, D., Mackensen von, S. & Hilberg, T., 2013, In: HAEMOPHILIA. 19, 2, p. 194-199 2.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  59. Health-related quality of life in haemophilia patients with inhibitors and their caregivers.

    Dekoven, M., Wisniewski, T., Petrilla, A., Holot, N., Lee, W. C., Cooper, D. L. & Mackensen von, S., 2013, In: HAEMOPHILIA. 19, 2, p. 287-293 2.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  60. 2012

  61. A new tool for the assessment of satisfaction with iron chelation therapy (ICT-Sat) for patients with β-thalassemia major.

    Elalfy, M. S., Massoud, W., Elsherif, N. H., Labib, J. H., Elalfy, O. M., Elaasar, S. & Mackensen von, S., 2012, In: PEDIATR BLOOD CANCER. 58, 6, p. 910-915 6.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

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