Home treatment of haemarthrosis with recombinant activated factor VII in patients with haemophilia A or B and inhibitors

Bensadok, Meriem; Almomen, Abdulkareem; Alzoebie, A.; Fegoun, Soraya Benchikh El; Wali, Yasser; Hamzy, Fati; Mehalhal, N; Grifi, Fatiha; Hamdi, S.; Mesli, Naima; Owaidah, Tarek; Saad, Hossam; Mansour, Nouredine Sidi; Touhami, Hadj

doi:10.1097/mbc.0000000000000564

Cited by 5 publications

(11 citation statements)

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“…Individuals with haemophilia A with inhibitors were the predominant population across the included studies, accounting for 76% to 100% of all participants. Individuals with haemophilia B with inhibitors accounted for 4% to 24% . The study by Bech et al also included a minority of participants with acquired haemophilia or FVII deficiency, and one individual in Santagostino 1999 had acquired haemophilia A.…”

Section: Resultsmentioning

confidence: 99%

“…Thirteen of the included studies reported data for FVIII inhibitor titres. Across eight of these studies, the mean values for inhibitor titre ranged from 8.6 BU/mL to 200.8 BU/mL (ADEPT ™ 1; data on file). The median inhibitor titre reported in two studies was 18 and 19 BU/mL, respectively .…”

Section: Resultsmentioning

confidence: 99%

“…The proportion of traumatic bleeds in these studies TA B L E 1 (Continued) ranged from 11% (ADEPT ™ 1; data on file) to 47%. 27 Other reported bleed types included surgical, dental and/or other unspecified procedures.…”

Section: Type Of Bleedmentioning

confidence: 99%

“…Thirteen of the included studies reported data for FVIII inhibitor titres. Across eight of these studies,22,23,25,27,[30][31][32] the mean values for inhibitor titre ranged from 8.6 BU/mL 22 to 200.8 BU/mL (ADEPT™1;…”

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confidence: 99%

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Methodologies for data collection in congenital haemophilia with inhibitors (CHwI): critical assessment of the literature and lessons learned from recombinant factor VIIa

2018

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Data from the individual studies confirmed that rFVIIa is an effective therapy for the on-demand treatment of bleeds in congenital haemophilia with inhibitors. However, the high levels of heterogeneity between studies precluded pooling of results for a valid, reliable or precise summary measure. There remains a need to implement standardized clinical definitions and measurements for the effectiveness and safety of haemophilia therapies in future clinical trials.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Type Of Bleedmentioning

confidence: 99%

mentioning

confidence: 99%

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Methodologies for data collection in congenital haemophilia with inhibitors (CHwI): critical assessment of the literature and lessons learned from recombinant factor VIIa

2018

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“…[1][2][3][4][5] Meanwhile, home treatment of haemophiliacs is the standard of care in developed countries and gets increasingly implemented also in developing countries as it has a positive impact on patients' health-related quality of life (HRQoL). 4,6 In the United States, approximately 70% of patients with haemophilia receive individualized care by a HTC. 7 Across Europe, the availability of HTCs and the range of services provided by different centres vary significantly between different countries.…”

Section: Introductionmentioning

confidence: 99%

Untitled

2018

Hamostaseologie

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Introduction Regular visits at haemophilia treatment centres (HTCs) in rural regions are often dependent on the access to a private car due to lack of or limited availability of public means. Therefore, a mobile haemophilia outpatient care (MHOC) concept providing home visits to haemophilia patients has been developed by the Saarland HTC, which is located in a rural German region. Methods Haemophilia patients and their parents were home visited at least twice (baseline, follow-up) by trained medical staff. Socio-demographic and clinical data were collected and interviews were performed asking the patients and parents about their needs and expectations towards such a MHOC. Results Seventy-nine patients were enrolled (56 adults, 23 children), 62.0% severely affected, 48.1% on prophylaxis, with a mean age of 37.4 AE 16.4 years (17-78) and 9.8 AE 4.2 years (3-16), respectively. Median travel distance to the HTC was 43.5 km (3-200). Note that 92.4% considered an intense binding to the HTC and a MHOC concept as 'rather/very important' (88.6%). They expected from a MHOC to provide consulting and educating activities, support in elderhood issues and treatment. For 35.4%, a MHOC could currently provide additional support, mainly due to patient's immobility and need of consultancy. They mainly used services in terms of consultancy in social-legal affairs and support in contacting authorities. Conclusion The results of this study support the hypothesis that a MHOC concept is a needful supplement in haemophilia comprehensive care and will improve the challenging haemophilia treatment, especially for those with limited access to HTCs or with disabilities. Zusammenfassung Einleitung Regelmäßige Besuche in Hämophilie-Behandlungszentren (HTCs) hängen in ländlichen Regionen oft vom Zugang zu einem privaten Auto ab, da öffentliche Verkehrsmittel nicht oder nur in begrenztem Umfang zur Verfügung stehen. Ein mobiles Hämophilie-Ambulanz-Konzept (MHOC), das Hausbesuche bei Hämophilie

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

et al. 2020

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In the context of the ‘Mobile Haemophilia Outpatient Care (MHOC)’ project we aimed to gather insights into the health-related quality of life (HRQoL), treatment satisfaction (TS) and adherence of persons with haemophilia (PWHs) who get treated at the Saarland University Hospital Haemophilia Treatment Centre (HTC). PWHs were visited at home at least twice (baseline, follow-up) by trained medical staff. Individual interviews were performed to measure patients' HRQoL and TS with validated questionnaires (Haem-A-QoL/Haemo-QoL and Hemo-SatA/Hemo-SatP). Socio-demographic and clinical data were collected. In total, 79 PWHs were enrolled; 56 adults with a mean age of 37.4 ± 16.4 years (17–78) and 23 children [mean age of 9.8 ± 4.2 years (3–16)]. In total, 62% were severely affected; 48.1% received prophylaxis. Patients reported good HRQoL (adults: 23.1 ± 17.1; kids: 24.3 ± 11.1). Patients (M = 11.2 ± 9.5) and parents (M = 14.3 ± 7.4) were very satisfied with their provided treatment. The majority of study participants were evaluated to have a good treatment adherence. After 1-year follow-up of the MHOC, a significant improvement in HRQoL was seen in adults (p < 0.033) and in proxy ratings of parents (p < 0.0001); TS remained high with no change by MHOC intervention. Patients reported good HRQoL and TS. Most of them were evaluated as having a good treatment adherence. After implementation of the MHOC, adult patients reported a better HRQoL. Such a mobile medical care service is considered beneficial for patients, especially with limited access to a HTC.

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Home treatment of haemarthrosis with recombinant activated factor VII in patients with haemophilia A or B and inhibitors

Abstract: Supplemental Digital Content is available in the text

Cited by 5 publications

References 14 publications

Methodologies for data collection in congenital haemophilia with inhibitors (CHwI): critical assessment of the literature and lessons learned from recombinant factor VIIa

Methodologies for data collection in congenital haemophilia with inhibitors (CHwI): critical assessment of the literature and lessons learned from recombinant factor VIIa

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

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