Disability in Indian patients with haemophilia

Kar, Anita; Mirkazemi, Roksana; Singh, Pavan Kumar; Potnis‐Lele, M.; Lohade, Sunil; Lalwani, Anil K.; Saha, AnupKumar

doi:10.1111/j.1365-2516.2007.01483.x

Cited by 25 publications

(29 citation statements)

References 6 publications

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“…In Brazil, the use of on‐demand factor therapy has highlighted the issue of MSK complications, the major cause of reduced quality of life for PWH in developing countries [24]. In this context, the haemophilia multidisciplinary team from the University of Campinas, UNICAMP, Brazil, embarked upon the MSK MADE in Brazil project to develop assessment tools and protocols to prevent and treat MSK complications of haemophilia, and to create educational materials for health and education professionals involved with haemophilia, as well as for PWH and their families.…”

Section: Discussionmentioning

confidence: 99%

Meeting the challenges of haemophilia care and patient support in China and Brazil

2012

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Projects are underway in many developing countries to try to improve the provision of treatment and access to care for people with haemophilia (PWH), as long-term prophylactic treatment, which improves quality of life for PWH, is still restricted to developed countries. In most developing countries, therapy is limited to on-demand treatment or even no replacement treatment at all. Combined with limited healthcare resources, this lack of treatment can lead to a vicious circle of lack of care, disability, unemployment and lack of access to health insurance for haemophilia patients. In China, the establishment of the Haemophilia Treatment Centre Collaborative Network of China (HTCCNC), in conjunction with the World Federation of Hemophilia, has improved haemophilia care and the identification of PWH. In Brazil, on-demand treatment has improved the health of PWH but does not prevent musculoskeletal (MSK) complications, the major cause of deterioration in quality of life for PWH. The Novo Nordisk Haemophilia Foundation BR2 project was therefore designed to improve quality of life of PWH through improvements in their physical, mental and social wellbeing. This paper will briefly review these projects and describe the current status of haemophilia care in these countries. While there is still a long way to go before optimal care becomes a reality for all PWH in developing countries, significant progress has been made, and knowledge of the impact and outcomes of these projects can inform best practice worldwide.

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Section: Discussionmentioning

confidence: 99%

Meeting the challenges of haemophilia care and patient support in China and Brazil

2012

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“…In our study, haemarthrosis was the most common (57.5%) type of bleeding followed by skin and subcutaneous bleeds. In an Indian study by Kar et al 17 in 148 patients with severe haemophilia A, knee joint was affected in all. The long-term consequences of repeated joint bleeds are the development of progressive joint damage and disability.…”

Section: Discussionmentioning

confidence: 99%

Clinical Profile of Haemophilia in Children in a Tertiary Care Centre

Varghese¹,

Padmakumar²

2017

jemds

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BACKGROUNDHaemophilia A and haemophilia B are the most common and serious congenital coagulation factor deficiencies. The clinical findings in haemophilia A and haemophilia B are identical. Majority of children with haemophilia show increased bleeding tendency by around one year. The hallmark of haemophilic bleeding is haemarthrosis. MATERIALS AND METHODSThis is an observational study conducted at Government Medical College, Kottayam. Study population included all children with haemophilia less than 18 years of age attending the haemophilia clinic. RESULTSTotal 40 children with haemophilia were enrolled in the study. Factor VIII deficiency was observed in 30 (75%) patients (Haemophilia A), while 10 (25%) patients were deficient in Factor IX (Haemophilia B). Majority of haemophilia patients in our study had severe deficiency. CONCLUSIONHaemophilia A was more in our study. Bruises and ecchymoses are the most common initial presentation.

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“…In a convenience sample of 148 patients with severe hemophilia, physical disability was present in 79 and 68% patients who were[25 years old and between 13-24 years, respectively [7]. These high disability rates have a severe negative impact on productivity and the patient's ability to have a successful job or career.…”

Section: Hemophilia In India: Overviewmentioning

confidence: 99%

Hemophilia Care in India: A Review and Experience from a Tertiary Care Centre in Uttar Pradesh

Phadke

2011

Indian J Hematol Blood Transfus

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Approximately 14,000 people with hemophilia are registered at the Hemophilia Federation of India; however, hemophilia remains under-diagnosed and many cases are not registered. In June 2009, the Government of Uttar Pradesh made anti-hemophilic factors available at a few centers, including the Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow. Consequently, the level of hemophilia care has improved considerably in recent times. Amongst the many challenges facing people with hemophilia, the development of inhibitors, which neutralize clotting factors provided by replacement therapy, is the most feared one. Healthcare professionals who treat people with hemophilia should not only be knowledgeable about the condition and committed to bettering the management of hemophilia, but also take responsibility for the judicious allocation of resources for various aspects of managing hemophilia. This manuscript aims to raise awareness regarding the detection and management of inhibitors in hemophilia based on the experience of a tertiary care hemophilia treatment centre in Uttar Pradesh, India.

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Disability in Indian patients with haemophilia

Cited by 25 publications

References 6 publications

Meeting the challenges of haemophilia care and patient support in China and Brazil

Meeting the challenges of haemophilia care and patient support in China and Brazil

Clinical Profile of Haemophilia in Children in a Tertiary Care Centre

Hemophilia Care in India: A Review and Experience from a Tertiary Care Centre in Uttar Pradesh

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