2023

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
HAEMOPHILIA. 2023;29(1):199-209.

2021

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
BLOOD. 2021;137(22):3127-3136.

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, Reinke S, Kowalski D, Shneyder M, Clausnizer H, Rocke A, Junker R, Nowak-Göttl U
ACTA HAEMATOL-BASEL. 2021;144(2):166-175.

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, Lehle M, Jiménez-Yuste V, von Mackensen S
HAEMOPHILIA. 2021;27(3):398-407.

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
GESUNDHEITSWESEN. 2021;83(4):282-290.

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, Négrier C, Paz-Priel I, Chebon S, Jiménez-Yuste V, Callaghan M, Lehle M, Niggli M, Mahlangu J, Shapiro A, Shima M, Campinha-Bacote A, Levy G, Oldenburg J, von Mackensen S, Pipe S
HAEMOPHILIA. 2021;27(5):854-865.

2020

Heavy menstrual bleeding in women with inherited bleeding disorders
Djambas Khayat C, Gouider E, von Mackensen S, Abdul Kadir R
HAEMOPHILIA. 2020;26 Suppl 3:16-19.

Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company
Hay C, Shima M, Makris M, Jiménez-Yuste V, Oldenburg J, Fischer K, Iorio A, Skinner M, Santagostino E, von Mackensen S, Kessler C
HAEMOPHILIA. 2020;26(6):966-974.

Cross-cultural adaptation and validation of Haem-A-QoL in Côte d'Ivoire
Lambert C, Meité N, Sanogo I, Lobet S, von Mackensen S, Hermans C
HAEMOPHILIA. 2020;26(3):459-466.

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, Mahlangu J, Sidonio R, Trask P, Uguen M, Chang T, Shima M, Young G, Oldenburg J, von Mackensen S
HAEMOPHILIA. 2020;26(6):1009-1018.

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, Jiménez-Yuste V, von Mackensen S, Levy G
PEDIATR BLOOD CANCER. 2020;67(10):e28474.

BAY 81-8973 prophylaxis and pharmacokinetics in haemophilia A: Interim results from the TAURUS study
Santoro C, Fuh B, Le P, Maes P, Berrueco R, Mingot-Castellano E, von Mackensen S, Solms A, Wang M
EUR J HAEMATOL. 2020;105(2):164-172.

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
HAEMOPHILIA. 2020;26(6):1019-1030.

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
HAMOSTASEOLOGIE. 2020;40(5):621-630.

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
HAEMOPHILIA. 2020;26(6):e272-e281.

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
HAMOSTASEOLOGIE. 2020;40(5):631-641.

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, Notarangelo L, Biasioli C, Aru A, Milan M, Linari S, Rocino A, Gagliano F, Di Minno G, Gamba G, Santoro R, Schinco P, Marietta M, Seuser A, von Mackensen S
BLOOD TRANSFUS-ITALY. 2020;18(2):152-158.

2019

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, Pham T, Lee X, von Mackensen S, Landorph A, Takedani H, Oldenburg J
PATIENT PREFER ADHER. 2019;13:497-513.

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
HAEMOPHILIA. 2019;25(3):416-423.

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, Shima M, Mancuso M, Trask P, Recht M, Garcia C, Yang R, Lehle M, Macharia H, Asikanius E, Levy G, Kruse-Jarres R, von Mackensen S
HAEMOPHILIA. 2019;25(3):382-391.

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
J CLIN NURS. 2019;28(21-22):4077-4086.

The effect of emicizumab prophylaxis on health-related outcomes in persons with haemophilia A with inhibitors: HAVEN 1 Study
Oldenburg J, Mahlangu J, Bujan W, Trask P, Callaghan M, Young G, Asikanius E, Peyvandi F, Santagostino E, Kruse-Jarres R, Negrier C, Kessler C, Xu J, Windyga J, Shima M, von Mackensen S
HAEMOPHILIA. 2019;25(1):33-44.

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, Edginton A, von Mackensen S, Kurnik K, Iorio A
THROMB HAEMOSTASIS. 2019;119(3):368-376.

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
HAEMOPHILIA. 2019;25(3):424-432.

Health-related quality of life in paediatric haemophilia B patients treated with rIX-FP
von Mackensen S, Shah J, Seifert W, Kenet G
HAEMOPHILIA. 2019;25(1):45-53.

2018

Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project
Eichler H, Schleicher C, Heine S, Graf N, von Mackensen S
HAMOSTASEOLOGIE. 2018;38(3):129-140.

The multiple benefits of sport in haemophilia
Farrugia A, Gringeri A, von Mackensen S
HAEMOPHILIA. 2018;24(3):341-343.

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
HAMOSTASEOLOGIE. 2018;38(3):150-157.

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
CLIN APPL THROMB-HEM. 2018;24(7):1073-1081.

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, Kurnik K, Khair K
HAEMOPHILIA. 2018;24(6):888-895.

2017

Choosing outcome assessment tools in haemophilia care and research: a multidisciplinary perspective
Fischer K, Poonnoose P, Dunn A, Babyn P, Manco-Johnson M, David J, van der Net J, Feldman B, Berger K, Carcao M, de Kleijn P, Silva M, Hilliard P, Doria A, Srivastava A, Blanchette V
HAEMOPHILIA. 2017;23(1):11-24.

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
HAEMOPHILIA. 2017;23(6):918-925.

Caregiver burden in haemophilia: Results from a single UK centre
Khair K, von Mackensen S
The Journal of Haemophilia Practice. 2017;4(1):1-9.

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
HAEMOPHILIA. 2017;23(1):144-151.

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
HAEMOPHILIA. 2017;23(3):383-391.

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
HAEMOPHILIA. 2017;23(4):566-574.

2016

The impact of social factors on outcomes in patients with bleeding disorders
Holstein K, von Mackensen S, Bokemeyer C, Langer F
HAEMOPHILIA. 2016;22(1):46-53.

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
BIOMED RES INT . 2016;1579428.

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, Khair K
HAEMOPHILIA. 2016;22(4):521-30.

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, Krishnan S, Auguste P, Poon J, von Maltzahn R, Yu R, Pierce G, Mei B, Mahlangu J, von Mackensen S
HAEMOPHILIA. 2016;22(6):866-872.

2015

Health-related quality of life of partners of adults with haemophilia
von Mackensen S, Lindvall K, Elmståhl S, Berntorp E
The Journal of Haemophilia Practice. 2015;2(1):20-26.

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
VALUE HEALTH. 2015;18(7):A674.

Interpreting important health-related quality of life change using the Haem-A-QoL
Wyrwich K, Krishnan S, Poon J, Auguste P, von Maltzahn R, Yu R, von Mackensen S
HAEMOPHILIA. 2015;21(5):578-84.

2014

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, Russo G, von Mackensen S
PEDIATR HEMAT ONCOL. 2014;31(6):534-47.

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, Pfiffner C, Flachenecker P
HEALTH QUAL LIFE OUT. 2014;12:119.

Increased burden on caregivers of having a child with haemophilia complicated by inhibitors
Lindvall K, von Mackensen S, Elmståhl S, Khair K, Stain A, Ljung R, Berntorp E
PEDIATR BLOOD CANCER. 2014;61(4):706-711.

2013

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
HAEMOPHILIA. 2013;19(2):194-199.

Health-related quality of life in haemophilia patients with inhibitors and their caregivers.
Dekoven M, Wisniewski T, Petrilla A, Holot N, Lee W, Cooper D, Mackensen von S
HAEMOPHILIA. 2013;19(2):287-293.

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, Acquadro C, Strandberg-Larsen M
HAEMOPHILIA. 2013;19(2):73-83.

2012

Why should we care about quality of life in persons with haemophilia?
Aledort L, Bullinger M, Mackensen von S, Wasserman J, Young N, Globe D, Group H
HAEMOPHILIA. 2012;18(3):154-157.

Haemophilia & Exercise Project (HEP): subjective and objective physical performance in adult haemophilia patients--results of a cross-sectional study.
Czepa D, Mackensen von S, Hilberg T
HAEMOPHILIA. 2012;18(1):80-85.

A new tool for the assessment of satisfaction with iron chelation therapy (ICT-Sat) for patients with β-thalassemia major.
Elalfy M, Massoud W, Elsherif N, Labib J, Elalfy O, Elaasar S, Mackensen von S
PEDIATR BLOOD CANCER. 2012;58(6):910-915.

The impact of sport on children with haemophilia.
Khair K, Littley A, Will A, Mackensen von S
HAEMOPHILIA. 2012;18(6):898-905.

Linking quality-of-life measures using the International Classification of Functioning, Disability and Health and the International Classification of Functioning, Disability and Health-Children and Youth Version in chronic health conditions: the example of young people with hemophilia.
Krasuska M, Riva S, Fava L, Mackensen von S, Bullinger M
AM J PHYS MED REHAB. 2012;91(13 Suppl 1):74-83.

Quality of life in adult patients with haemophilia--a single centre experience from Sweden.
Lindvall K, Mackensen von S, Berntorp E
HAEMOPHILIA. 2012;18(4):527-531.

The impact of a specific aqua-training for adult haemophilic patients--results of the WATERCISE study (WAT-QoL).
Mackensen von S, Eifrig B, Zäch D, Kalnins J, Wieloch A, Zeller W
HAEMOPHILIA. 2012;18(5):714-721.

Health-related quality of life and psychological well-being in elderly patients with haemophilia.
Mackensen von S, Gringeri A, Siboni S, Mannucci P, Centres I
HAEMOPHILIA. 2012;18(3):345-352.

Haemophilia care in Europe: the ESCHQoL study.
Schramm W, Gringeri A, Ljung R, Berger K, Crispin A, Bullinger M, Giangrande P, Mackensen von S, Mantovani L, Nemes L, Serban M, Group E
HAEMOPHILIA. 2012;18(5):729-737.

2011

A randomized clinical trial of prophylaxis in children with hemophilia A (the ESPRIT Study).
Gringeri A, Lundin B, Mackensen von S, Mantovani L, Mannucci P, Group E
J THROMB HAEMOST. 2011;9(4):700-710.

Pharmacotherapy of haemophilia A.
Gringeri A, Muça-Perja M, Mangiafico L, Mackensen von S
EXPERT OPIN BIOL TH. 2011;11(8):1039-1053.

Bone density and health-related quality of life in adult patients with severe haemophilia.
Khawaji M, Astermark J, Mackensen von S, Akesson K, Berntorp E
HAEMOPHILIA. 2011;17(2):304-311.

Quality of life in women with bleeding disorders.
Mackensen von S
HAEMOPHILIA. 2011;17 Suppl 1:33-37.

Health-related quality of life in children and adolescents with stroke, self-reports, and parent/proxies reports: cross-sectional investigation.
Neuner B, Mackensen von S, Krümpel A, Manner D, Friefeld S, Nixdorf S, Frühwald M, DeVeber G, Nowak-Göttl U
ANN NEUROL. 2011;70(1):70-78.

Health-related quality of life in Egyptian children and adolescents with hemophilia A
Tantawy A, Mackensen S, El-Laboudy M, Labib J, Moftah F, El-Telbany M, Mansour W
PEDIATR HEMAT ONCOL. 2011;28(3):222-9.

2010

The impact of menstrual disorders on quality of life in women with inherited bleeding disorders.
Kadir R, Edlund M, Mackensen von S
HAEMOPHILIA. 2010;16(5):832-839.

Development and validation of a new questionnaire for the assessment of subjective physical performance in adult patients with haemophilia--the HEP-Test-Q.
Mackensen von S, Czepa D, Herbsleb M, Hilberg T
HAEMOPHILIA. 2010;16(1):170-178.

Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY).
Riva S, Bullinger M, Amann E, Mackensen von S
HEALTH QUAL LIFE OUT. 2010;8:139.

2009

Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review
Bullinger M, Globe D, Wasserman J, Young N, von Mackensen S
VALUE HEALTH. 2009;12(5):808-20.

Measuring patient-reported outcomes in haemophilia clinical research
Globe D, Young N, Von Mackensen S, Bullinger M, Wasserman J
HAEMOPHILIA. 2009;15(4):843-52.

An Evaluation of Health-Related Quality of Life (HRQoL) in a group of 4-7 year-old children with cleft lip and palate.
Sagheri D, Ravens-Sieberer U, Braumann B, von Mackensen S
J OROFAC ORTHOP. 2009;70(4):274-284.

Patients', physicians', and pharmacists' preferences towards coagulation factor concentrates to treat haemophilia with inhibitors: results from the COHIBA Study
Scalone L, Mantovani L, Borghetti F, Von Mackensen S, Gringeri A
HAEMOPHILIA. 2009;15(2):473-86.

Health status and quality of life of elderly persons with severe hemophilia born before the advent of modern replacement therapy
Siboni S, Mannucci P, Gringeri A, Franchini M, Tagliaferri A, Ferretti M, Tradati F, Santagostino E, von Mackensen S
J THROMB HAEMOST. 2009;7(5):780-6.

2008

Lebensqualität von jungen Patienten mit Hämophilie in Europa
Bullinger M, Gringeri A, von Mackensen S
BUNDESGESUNDHEITSBLA. 2008;51(6):637-645.

Psycho-social determinants of quality of life in children and adolescents with haemophilia-a cross-cultural approach
Bullinger M, von Mackensen S
CLIN PSYCHOL PSYCHOT. 2008;15(3):164-172.

Quality of life in haemophilia
Gringeri A, Von Mackensen S
HAEMOPHILIA. 2008;14 Suppl 3:19-25.

2007

The assessment of mood at workplace - psychometric analyses of the revised Profile of Mood States (POMS) questionnaire
Morfeld M, Petersen C, Krüger-Bödeker A, von Mackensen S, Bullinger M
Psychosoc Med. 2007;4:Doc06.

Quality of life and sports activities in patients with haemophilia
VON Mackensen S
HAEMOPHILIA. 2007;13 Suppl 2:38-43.

2006

Quality of life assessment in clinical practice in haemophilia treatment.
Gringeri A, Mantovani L, Mackensen von S
HAEMOPHILIA. 2006;12(3):22-29.

Development of a disease-specific quality of life questionnaire for children & adolescents with idiopathic thrombocytopenic purpura (ITP-QoL)
von Mackensen S, Nilsson C, Jankovic M, Mirra N, D'Angelo E, Borkhardt A, Ljung R
PEDIATR BLOOD CANCER. 2006;47(5 Suppl):688-91.

2005

Validation and clinical application of the german version of the palliative care outcome scale
Bausewein C, Fegg M, Radbruch L, Nauck F, von Mackensen S, Borasio G, Higginson I
J PAIN SYMPTOM MANAG. 2005;30(1):51-62.

Prevalence of weather sensitivity in Germany and Canada
von Mackensen S, Hoeppe P, Maarouf A, Tourigny P, Nowak D
INT J BIOMETEOROL. 2005;49(3):156-66.

2004

Quality of life assessment in haemophilia
Bullinger M, von Mackensen S
HAEMOPHILIA. 2004;10 Suppl 1:9-16.

Health status and health-related quality of life of children with haemophilia from six West European countries
Gringeri A, von Mackensen S, Auerswald G, Bullinger M, Perez Garrido R, Kellermann E, Khair K, Lenk H, Vicariot M, Villar A, Wermes C
HAEMOPHILIA. 2004;10 Suppl 1:26-33.

Disease-specific quality-of-life measurement tools for haemophilia patients
Remor E, Young N, Von Mackensen S, Lopatina E
HAEMOPHILIA. 2004;10 Suppl 4:30-4.

Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL)
von Mackensen S, Bullinger M
HAEMOPHILIA. 2004;10 Suppl 1:17-25.

2003

Quality of life in children and families with bleeding disorders
Bullinger M, Von Mackensen S
J PEDIAT HEMATOL ONC. 2003;25 Suppl 1:S64-7.

2002

Prävalenz von Wetterfühligkeit in Deutschland
Höppe P, von Mackensen S, Nowak D, Piel E
DEUT MED WOCHENSCHR. 2002;127(1-2):15-20.

1999

The psychological cost of aircraft noise for children
Bullinger M, Hygge S, Evans G, Meis M, von Mackensen S
Zentralbl Hyg Umweltmed. 1999;202(2-4):127-38.

The sick-building-syndrome--do women suffer more?
Bullinger M, Morfeld M, von Mackensen S, Brasche S
Zentralbl Hyg Umweltmed. 1999;202(2-4):235-41.

The sick building syndrome as a subjective perception-theoretical approach and assessment methods
von Mackensen S, Bullinger M, Morfeld M
Zentralbl Hyg Umweltmed. 1999;202(2-4):243-8.

Letzte Aktualisierung aus dem FIS: 18.04.2024 - 00:40 Uhr