Assessing the current knowledge, attitude and behaviour of adolescents and young adults living with haemophilia

Abstract

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.

Health Related Quality of Life and Psychopathological Symptoms in People With Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study

“…Furthermore, confirming previous studies, the HRQoL appears to have an inverse correlation with most psychological symptoms, such as anxiety, phobic anxiety, depression, obsessions and compulsions, interpersonal hypersensitivity, and somatic complaints. [3][4][5][28][29][30]35 Moreover, even the scores of paranoid ideation and psychoticism appear to have an inverse relationship with the HRQoL, highlighting the additional load of hostility, suspiciousness, withdrawal, and social isolation on the state of health. However, due to our study's small sample size, it is impossible to define the causal role of the symptoms on the deterioration of the HRQoL.…”

“…Most research agrees with the idea that specific factors in the medical history can determine a decline in specific components of HRQoL, such as physical activity, physical health, and social and interpersonal functioning. [2][3][4][5] Other studies underlined the role of factors such as work status and perceived physical pain.6,7 Nevertheless, many problems are still associated with older adults affected by age-related comorbidities (diabetes, cardiovascular and respiratory diseases, renal insufficiency, cancer, etc.) that require specialized medical and psychological interventions.…”