Royal Prince Alfred Hospital, Sydney Local Health District, Australia
Hydrotherapy in Bleeding Disorders: Impacts on Quality of Life and Function
The physiological benefits of hydrotherapy on the haemophilia population have been explored in literature and are promoted in national guidelines around the world. It is proposed that buoyancy allows for exercise to be completed in an environment where joints can be moved through a complete range of motion whilst being relieved of compressive forces. Additionally, water temperature and hydro-static pressures have also been linked in improved joint range of motion and muscle contractility.
However, recent systematic reviews show that the evidence base is weak. Despite reported improvements in pain and range of motion, the protocols for achieving these benefits are largely ambiguous. As a result, these reported benefits remain anecdotal. Further, there has been little investigation into the psychological benefits of hydrotherapy on the adult Haemophilia and VWD population. The relationship between functional status, quality of life and pain is a paradigm of particular importance to the ageing Haemophilia and VWD population and is worthy of further investigation. A hydrotherapy program consisting of graduated, individualised exercises delivered in a group setting will address functional impairments and result in improved quality of life measures.
Southern Alberta Rare Blood and Bleeding Disorders Comprehensive Care Program, Foothills Hospital/University of Calgary, Canada
Depression, anxiety and stress: A pilot study examining prevalence and impact on patient outcomes.
One goal of comprehensive hemophilia care is to improve the quality of life in persons with hemophilia. Current literature indicates that patients living with a chronic disease have increased levels of anxiety, depression and stress – all of which may affect their quality of life, health and adherence to treatment. There continues, however, to be a lack of literature examining the prevalence of each in patients with hemophilia, and effect on adherence, quality of life and general health.
There is a lack of literature differentiating between depression, stress and anxiety in adult patients with hemophilia. While not commonly used in hemophilia, the Depression, Anxiety and Stress Scale 21 (DASS-21) and the DSM-5 Self-Rated Cross Cutting Symptom Measure-Adult are validated surveys that have been used to differentiate between the three disorders/states in a variety of patient populations and diseases.
The aim of this project is to determine prevalence of anxiety, stress and depression in adult males with hemophilia and to assess relationships between psychiatric symptoms and quality of life, general health and productivity. A secondary aim of this project is to assess the relationship between anxiety, depression and stress and adherence to treatment (both self-reported and actual).
Adult (>18 years old) male patients with hemophilia A or B, currently followed in the program will be invited to participate. Participants will complete 6 surveys at a clinic visit, including the DASS-21, DSM-5, HAEMO-QOl-A, SF-36, WPAI and VERITAS-Pro/PRN.
Findings from this pilot project have the ability to contribute novel information regarding the specific psychiatric concerns of PWH and the effect that the different disorders have on patient wellbeing, productivity and adherence. The expected results will be used in the development of a screening tool and collaborative intervention strategy aimed at facilitating appropriate and effective psychosocial and support.
Tongji Hospital of Tongji medical college, Huazhong University of Science and Technology, China
Identification, Education, Psychological intervention, Fertility guidance for hemophilia carriers in China
After years of effort, China has made great progress in the general care and management of hemophilia patients. However, there is little data available on hemophilia carriers in China. The hemophilia carriers may be mothers of patients with hemophilia; their recognition of hemophilia, psychological conditions and quality of life (QoL) are known to have direct impact on the health and QoL of these hemophilia patients. On the other hand, carriers may give birth to patients with hemophilia. Therefore, we should pay more attention to the hemophilia carriers.
There are several aims in the project:
1. Identification of hemophilia carrier
The hemophilia carriers will be diagnosed by gene examination in our hemophilia center. All hemophilia carriers (about 80 hemophilia carriers) will be invited to participate in this study.
2. Assessment of psychological state and quality of life (QoL) for hemophilia carriers
The psycho-emotional state of hemophilia carriers was studied using the SCL-90-R questionnaire (the severity of psychopathological symptomatology); Quality of life (QoL) of the carriers is assessed by the Haemo-QoL questionaire.
3. Education, psychological intervention for hemophilia carriers
Content: General care and knowledge of haemophilia, home therapy management, lifestyle interference, psychological guidance and genetic counselling.
Methods: Face to face education, remote learning (i.e. wechat, email, QQ etc.)
4. Fertility guidance
The project aims to provide carriers with appropriate guidance or assistance in terms of fertility education prior to pregnancy, psychological or social support during pregnancy as well as factor assessment after birth.