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Skip search results from other journals and go to results- 3 JMIR Research Protocols
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Persons with a chronic health condition, such as the bleeding disorder hemophilia, are encouraged to use e Health tools to enable personalized treatment and shared decision-making. Hemophilia is an X-linked inherited coagulation factor deficiency of factor VIII (in hemophilia A) or factor IX (in hemophilia B), resulting in an increased bleeding tendency.
JMIR Hum Factors 2024;11:e48359
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The transition of care has typically been implemented in France for patients with hemophilia A with or without inhibitors. This disease is a rare bleeding disorder whose treatment relies on factor VIII injections or bypass agents. Chronic treatment for hemophilia A has been available only in French hospital pharmacies, and monthly dispensing was conditional on reimbursement of these drugs [10].
JMIR Form Res 2024;8:e54656
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Severe hemophilia A is an inherited bleeding disorder due to the deficiency of clotting factor VIII (FVIII), which causes bleeds occurring internally into joints and muscles, or external bleeding from minor cuts, surgical procedures, or injuries. The frequency and intensity of bleeding depends on the level of FVIII deficiency.
JMIR Res Protoc 2023;12:e43091
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Hemophilia is an inherited X-linked bleeding disorder. Hemophilia A is characterized by a deficiency in the clotting factor VIII, while Hemophilia B is a deficiency in factor IX. Given the reduced ability to form clots, people living with hemophilia experience an increased frequency and duration of bleeding events, which tend to occur mostly within the joints or muscles [1]. The standard of care for hemophilia treatment involves infusing factor replacement to increase factor concentrations in blood [1].
JMIR Hum Factors 2022;9(1):e30797
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Hemophilia is a rare X-linked recessive hemorrhagic disorder that affects mostly men. Hemophilia A and B are caused by deficiencies of coagulation factors VIII and IX, respectively [1]. One common severe complication of this congenital disorder is spontaneous and repetitive bleeding, particularly in the synovial joints [1]. Poor management can eventually lead to permanent joint deformity and chronic hemarthropathy, a severe type of arthritis caused by bleeding into the joints.
JMIR Form Res 2021;5(9):e27985
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A Blended Physiotherapy Intervention for Persons With Hemophilic Arthropathy: Development Study
Hemophilia is an X-linked congenital disorder that impairs the body’s ability to make blood clots [1]. It is a rare disease, with a prevalence of 1 in 10,000 persons. Hemophilia is characterized by prolonged bleeding after injuries, easy bruising, and an increased risk of bleeding in the joints and muscles. When untreated, persons with severe hemophilia (5% blood clotting factors) experience bleeding only after a trauma [1].
J Med Internet Res 2020;22(6):e16631
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Fortunately, the introduction of home therapy for hemophilia has empowered patients and their families to manage the disease more independently. However, the self-management of hemophilia is demanding, including the recognition of bleeding, adherence to self-administration of prophylactic infusions, recording of bleeding events, and management of a home inventory of medications.
Strategies are needed to improve the health outcomes and self-efficacy of patients with hemophilia.
J Med Internet Res 2019;21(7):e12340
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One of the conditions that requires the most needle-intensive care is hemophilia. Both hemophilia A (HA) and B (HB) are severe congenital bleeding disorders. Without intravenous (IV) infusions of clotting factor concentrates, children with hemophilia experience life- and limb-threatening bleeding. Most children with hemophilia begin routine IV infusions of factor concentrate between the age of 1 and 3 years and continue infusions 2-3 times per week for life.
JMIR Serious Games 2019;7(1):e10902
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Online Peer-to-Peer Mentoring Support for Youth with Hemophilia: Qualitative Needs Assessment
The challenges of transition of care for young people with hemophilia have been documented and well reviewed [1-3]. As the responsibilities of disease management shift from caregivers to patients themselves, adolescents are expected to gain knowledge and self-management skills to become independent. Despite well-developed resources for North American hemophilia care providers [4-6], adolescents and young adults report gaps in the understanding and skills [7-9].
JMIR Pediatr Parent 2018;1(2):e10958
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Both hemophilia A and B are rare diseases; the prevalence of hemophilia A is 1 in 5000 male live births and that of hemophilia B is 1 in 30,000 [1,2]. Factor replacement therapy with plasma-derived or recombinant concentrates at regular intervals to prevent both bleeding and the resultant joint damage (ie, primary prophylaxis) is the mainstay of treatment of hemophilia [2,3].
JMIR Res Protoc 2016;5(4):e239
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