Ageing and Haemophilia - How to address the economic and medical challenges of ageing with haemophilia and support the patients?
Tuesday, 23 February 2010, 9.00am to 12.30pm - Radisson Blu EU Hotel, Rue d'Idalie 35, 1050 Brussels
Participants of the 9th European Haemophilia Consortium (EHC) Round Table called for a greater multidisciplinary approach to ageing haemophilia patients, with a strong emphasis on their social and emotional needs. Stakeholders also advocated for an increased focus on pain management which stands to significantly impact the quality of life of Haemophilia suffers.
The Round Table participants stressed that until the last decade, there was a minority of ageing patients, mainly due to the lack of early treatment and comprehensive care. As Haemophila patients live longer, they present a range of new medical, economic and social challenges which need to be thoroughly addressed across the EU.
The speakers indicated that co-morbidity would soon become a bigger problem for Haemophila patients than Haemophila itself and advocated for an enhanced, integrated approach of Haemophilia care, which gathers an experienced team of various specialists who are close to the patient’s home.
Doctors and patients present at the debate highlighted that ageing Haemophilia patients greatest concerns are losing their autonomy, coupled with persistent chronic pain.
NMOs representatives stressed that the dialogue and social support seems to become a key aspect in ensuring well being of haemophilia patients through their advanced years.
Consensus arose on the need for more social support to ageing patients with Haemophila, making sure they are not isolated, and giving them the opportunity to maintain a good quality of life. Echoing the Round Table exchange, the EHC called for:
- An enhanced multidisciplinary care approach with a comprehensive group of specialists available for ageing Haemophilia patients
- Enhanced social integration of ageing patients, including networking social groups for patients, and the promotion of physical activity
- Robust strategies to ensure cost-effective treatment for ageing patients and to guaranty healthy ageing
- Increased information on access to physiotherapy and other services which contribute to the well-being of patients
- Adequate care that includes chronic pain management which today dominates ageing Haemophilia patient’s concerns
Please see the Round Table documents:
Speakers Presentations:
For more information please contact: info@ehc.eu
