Introduction: There is significant incidence of Haemophilia in India, with second largest number of persons with Haemophilia A. 20,778 patients registered with Haemophilia Foundation of India in 2018. Research in India includes diagnostic studies, complications and co-morbidities, prenatal diagnosis, inhibitor development and gene therapy. Limited is known about quality of life of these patients. Since Haemophilia leads to the loss of 'normal lifestyle' in young people resulting in emotional distress and depression, it is important to analyse Knowledge, Attitude and Behaviour of persons with Haemophilia. Aim: The aim of the study is to focus on exploring the status of Haemophilia and knowledge, attitude, behaviour of adolescents and youths with haemophilia with the objectives to study 1) the current medical status of haemophilia amongst target population; 2) the knowledge, attitude and behaviour of patients with haemophilia towards their condition. Methods: Respondents in the age group of 15-30 years, who were registered with the Hemophilia Treatment Centers of Government Hospitals/Hemophilia Societies, were interviewed. Data were collected using a structured questionnaire. The study was conducted in two different states and with respondents of two different age groups. Findings: Most respondents suffered from severe haemophilia and co-morbidities such as anxiety, stress, chronic pain and headache. All of them felt that haemophilia interferes in leading a normal life and perceive a grim future. Conclusion: Young people in India need technical, financial and psychological support to prevent complications related to haemophilia. While most of them take responsibility for their health, more behavioural changes need to be inducted to improve quality of life.

Background: Haemophilia A and B are the most common severe bleeding disorders and are inherited as X linked recessive pattern. The main clinical manifestations include bleeding into musculoskeletal sites or soft tissues mainly causing joint impairment and thus resulting in various morbidities. Prophylaxis therapy and inhibitor management have contributed a lot to the management of haemophilia cases. However in resource poor setting countries, like India, availability of factors, prophylactic therapy is farfetched leading to joint abnormalities, decreased physical activity and thus leading to different nutritional states. Studies from developed countries reveal obesity and overweight instances in children with Hemophilia. However not many studies have been undertaken to evaluate the nutritional status of such children in India.Methods: This study was conducted in the Comprehensive hemophilia Care Centre, Victoria Hospital, attached to Bangalore Medical College. A total of 50 children were included in the study. Children aged between 4 and 18 years attending the hemophilia Clinic were included in the study. Observations and review of relevant documents were done.Results: Among 50 children of haemophilia, 18(36%) children were aged less than 10 years and 32(64%) children were aged more than 10 years. The mean age of onset of disease in haemophilia A was 27.5 months (SD of 24.84; range 6-120) and in haemophilia B was 8 months (SD of 2.72; range 3-12). The mean BMI among children aged more than 10 years was more (21.35; SD= 4.02) compared to the children less than 10 years (16.87; SD= 3.41).Conclusions: The prevalence of overweight and obesity among children with Haemophilia is more in adolescent age group compared to children in the first decade.

Objectives: The aim of this study is to observe the clinical spectrum of presentation of hemophilia and other bleeding disorders in children. Material and Methods: This observational study was carried out in the Comprehensive Hemophilia Center at Bangalore Medical College and Research Institute from December 2015 to August 2016. Clinical profile of 126 diagnosed children of hemophilia and other bleeding disorders <18 years of age was analyzed. Results: Among the 126 cases of bleeding disorders, 123 were male and 3 were female. 101 (80.2%) cases were of hemophilia A, 15 (11.9%) cases were hemophilia B, and 3 (2.4%) were of Von Willebrand disease. Other rare deficiencies were seen in 7 (5.5%) cases. Mean age at diagnosis was 2.5 years (range-1 month to 8 years). Only 45.2% of cases had a family history of bleeding. Inhibitors were seen in 9 (7.14%) cases with hemophilia A. Joint bleeding (52.9%) either spontaneous or after trauma was the main forms of bleeds with hemarthrosis of knee joint being most common. Psoas muscle bleeds in 10 (33.3%) followed by hematemesis and melena in 7 (23.3%) were the most common critical bleed seen in our patients. Numerous psychosocial issues such as school absenteeism (68.25%), family dysfunction (50.8%), depression, low self-esteem, parental separation (21.4%), and divorce (2.4%) were noticed. Mothers were blamed for the disease and victimized in 10 (7.9%) cases. Conclusion: Joint bleeding was the most common bleed with hemarthrosis of knee joint being the major presentation. Psoas muscle bleeds were the most common critical bleed. Major life-threatening bleeds such as intracranial bleed and liver bleeds were seen only in patients with severe hemophilia A. Numerous psychosocial issues were noticed quite often and need equal attention as a medical treatment to optimize hemophilia care.