A team of haemophilia experts should adopt a holistic approach to provide better health and quality of life for patients.
Haemophilia is a chronic and inherited X-linked bleeding disorder that requires lifelong medical care. This rare genetic condition is much more than a bleeding disorder; it affects a person’s entire life. The high cost of the factor concentrates used in replacement therapy makes haemophilia treatment expensive and complex.
However, the management of haemophilia is not based solely on achieving access to better treatment with safe factor concentrates. It also includes accurately diagnosing the disorder and providing specialized comprehensive care by a multidisciplinary team of specialists trained in haemophilia management.
Comprehensive care by haemophilia experts begins when you are born and lasts your whole life. It goes beyond simply treating bleeding, and means tackling small problems before they become big. For instance, it is much easier to fill a cavity in a tooth than to extract a tooth that is allowed to decay.
Thus, when we look at haemophilia, which affects one’s normal being, we need treatment beyond just medicines. Comprehensive care treats the patient and the family through continuous supervision, evaluating all the medical and psychosocial aspects of bleeding disorders. The facets including physical, emotional, psychological, educational, financial, and vocational factors of a person are addressed.
The priority is to improve the quality of life with the overall objective of achieving a high degree of patient satisfaction and helping them to be more independent and productive. Long-term management of joint and muscle damage, prevention and care of bleeding, and management of complications from treatment including inhibitor development and transfusion-transmitted infections are the keys to improving health and quality of life.
The wide-ranging needs of people with haemophilia and their families are best met through the coordinated delivery of comprehensive care by a multidisciplinary team of healthcare professionals. There will be ups and downs in such care, and having a highly skilled care team for ongoing support is essential. The team consists of professionals from several disciplines who partner with patients and families to design an individualized care plan that coordinates the complex medical services required to manage the disorder.
The comprehensive care team may also include a chronic pain specialist, dentist, geneticist, hepatologist, infectious disease specialist, immunologist, gynaecologist, vocational counsellor, etc., based on the needs of the patients and the clinical specialists available.
All the members of the core team should have expertise and experience in treating patients with bleeding disorders and be accessible to patients in a timely and convenient manner. Adequate emergency care should also be available.
The following support resources are also necessary¹:
Comprehensive Care Haemophilia Treatment Centres (HTCs) ensure that people with haemophilia gain access to the entire range of services essential to manage the condition and provide services to meet the physical, psychosocial, nutritional, and educational needs usually related to patients with bleeding disorders.
Provision for parenteral nutrition and the administration of dietary supplements is also a vital part of comprehensive care. Care is provided irrespective of race, religion, culture, or ability to pay, and the influence of comprehensive care expands into the community. The comprehensive care teams work with schools, health insurance companies, and employers to help affected children stay in school, to maintain patient access to care, and to help adults gain and maintain employment.
Another key service of an HTC is the participation in the Universal Data Collection (UDC) system. The UDC is a nationwide project of the Centres for Disease Control and Prevention’s Division of Blood Disorders. Health information is collected routinely, which is necessary to monitor the major complications of bleeding disorders. Persons with bleeding disorders are eligible to enrol in the UDC at their participating HTC.
Overall, all community members — patients, healthcare professionals, advocacy groups, government, and industry — have a role to play to help ensure broad-based access to treatment and care for people with haemophilia. Pharma companies can help raise the standard of, and provide access to, care for the global haemophilia community by making a number of resources available.
These include education, advocacy programs and support, clinician support, and factor replacement therapies, which are an integral component of the comprehensive care approach. Federal funding of both haemophilia research and comprehensive care should be increased.
Remember, the patient is the most important member of the comprehensive care team.
Finally, the goal of comprehensive care is to help the person with a bleeding disorder to lead a normal, long life. The team looks for ways to help people do as much as they can and enjoy life to the fullest. When you have the freedom to direct your own life, you learn to care for yourself as much as possible.
Discover how to build a network of haemophilia experts for the management of comprehensive care programs by contacting phamax today.