Project description: Men of all ages have external and internal influences which remind them of their masculinity in roles or practices such as parenting, marriage, decision-making, and vocations. What transpires when a health condition is part of the equation? We are seeking to explore this theme. The research objectives are to:
Project description: For most children and young adults with haemophilia with inhibitors, immune tolerance offers a successful treatment option. However, there are a small but significant number of boys for whom immune tolerance fails, resulting in recurrent bleeds, joint damage, pain, missed educational opportunities and poor peer-to-peer support. As a result normal life of an adolescent with haemophilia is not achievable. Aims of the project are to understand the impact of living with a long-standing inhibitor from the perspective of adolescents/young adults with haemophilia. The study will include a physiotherapist assessment of joint health and online completion of validated physical function and QoL questionnaires.
Project description: Additional to haematological treatment, nowadays is assumed that haemophilic patients´ attention must be multidisciplinary. Psychosocial support in the medical setting helps individuals gain a personal understanding of hemophilia. Health professionals provide psychosocial support to help patients and their families to develop strategies to address the challenges physical, mental, emotional and social issues related to the condition of a bleeding disorder. A major goal of this support is to teach patients to manage their haemophilia, take responsibility for their care and monitoring of treatment, gradually acquiring a more active role, and increase confidence in their abilities to control your condition, goals fundamental to this work.
Furthermore, the problem of adherence is one of the most daunting issues for physicians. The lowest levels of therapeutic adherence have been observed in chronic patients, in which there is no discomfort or perception of immediate risk and in which the treatment requires lifestyle changes and daily effort.
The aim of this project is to present and to evaluate the effectiveness of a psychological intervention programme developed in order to improve adherence to prophylaxis and emotional state of adult patients with severe haemophilia. Following the intervention, significant changes in the degree of adherence to treatment, relevant clinical variables (anxiety, depression and self-esteem), the degree of interference of haemophilia in the patient’s life and the locus of control over health are intended.
Project description: The Patient Reported Outcomes, Burdens, and Experiences (PROBE) Study aims to develop a new global tool to enhance the direct patient-voice in health care decision-making. Government and private payers increasingly value data based on patient-centered outcomes research as part of the overall cost-benefit evaluation of high-cost care and treatment of diseases such as hemophilia. This emerging dimension of the healthcare environment presents a significant opportunity and urgent need to improve patient organizations’ ability to collect and interpret relevant outcomes data. More robust patient reported data will improve advocacy efforts to build comprehensive care programs, promote home treatment and implement preventative treatment regimens thus allowing advocacy arguments to move beyond emotion and anecdote to those grounded in real-world patient experiences and evidence.
With the support of the National Hemophilia Foundation, a global team of investigators will lead a patient focused research project to investigate and directly probe patient perspectives on outcomes they deem relevant to their care. Through PROBE we will develop and seek to validate the reliability, reproducibility and responsiveness of a low cost, easily administrable inventory for collecting patient self-reported outcomes, burdens and experiences in living with hemophilia. We anticipate that the metrics established through PROBE will allow for comparison of patient outcomes within a country over time and cross-sectional between countries (regionally and globally). The HERO Research Grant will support the core validation phase of the study involving a pilot feasibility assessment in a diverse set of countries.
Project description: Repeated bleeding into joint cavities is the major source of difficulties, and often has a disabling effect in people with hemophilia (PWH). Severe or repeated bleeds may lead to chronic synovitis, resulting in chronic, painful arthropathy and disability, which affects large numbers of Chinese PWH and has a significant impact on their quality of life. For these people, pain becomes a central aspect of life. Aims of the project are to:
1. Measure the frequency and intensity of arthritic joint pain on adult PWH
2. Investigate the prevalence of anxiety and depression on adult PWH using the Hospital Anxiety and Depression Scale
3. Assess the somatic symptoms of adult PWH using the Patient Health Questionnaire (PHQ-15)
4. Compare the psycho behavioral and functional characteristics among PWH with positive somatic symptoms and those without
5. Assess PWHs’ joint function in Hemophilia Joint Health Score (HJHS) and potential psychological and physical factors associated with HJHS