Haemophilia Nursing Care – A Changed Outlook

SULOCHANA B
Sulochana B is Associate Professor at Manipal College of Nursing, India

Photo right: Assoc Prof Huyen Tran, Sulochana B and Penny McCarthy at the Ronald Sawers Haemophilia Centre in Melbourne

To start with I quote John Stuart Mill, who says, “there are many truths of which the true meaning cannot be revealed until personal experience has brought it home”. This truly is how I look at my experience in Australia.

It was a wonderful opportunity for me to take up the recent International Hemophilia Training Fellowship during August and September 2013 at Ronald Sawers Haemophilia Centre at The Alfred hospital, Australia.

I am grateful to the World Federation of Hemophilia (WFH) for awarding the International Hemophilia Training Centre (IHTC) Fellowship to me in 2012. And I am thankful to the Hemophilia Foundation India for nominating me for the IHTC Fellowship.

This visit covered nursing observation in three large haemophilia treatment centres in Australia: The Alfred hospital, and the Royal Children’s Hospital in Melbourne and The Children’s Hospital at Westmead in Sydney.

It was a great opportunity for me to be exposed to the treatment modalities and management aspects of haemophilia care that relate to Indian nursing care of patients with haemophilia, bleeding disorders and other general patient care. I saw it as a stepping stone for improvement in care and clinical management decisions in our setting in the future. I personally acquired a large amount of professional knowledge on haemophilia patient care from interacting with doctors, nurses and other members of the healthcare team, and feel confident I will be able to pass this information on.

HAEMOPHILIA IN MANIPAL, INDIA

My association with haemophilia care began at the Hemophilia Society, Manipal (MHS), which is a registered chapter of the Hemophilia Foundation India, New Delhi and affiliated to the WFH. The MHS functions from Kasturba Hospital, Manipal, Manipal University (www.manipal.edu), Karnataka, India. The Manipal University supports the MHS in its various activities for the care of patients with haemophilia and other bleeding disorders. The MHS has 295 patient members with 205 patients with haemophilia A, 39 with haemophilia B, 41 with von Willebrand disease, and 10 with other bleeding disorders. The patients are from the nearby districts of Karnataka and northern Kerala. My role as the haemophilia nurse co-ordinator at our Society involves identification of new cases, and training local healthcare workers in caring for persons with haemophilia and other bleeding disorders, along with patient education and counselling.

HAEMOPHILIA IN AUSTRALIA

State-of-the-art-facilities: The haemophilia treatment centre provides comprehensive care which consists of diagnosis, treatment, and management of haemophilia and other inherited bleeding disorders. An accurate diagnosis is quickly established, the family is educated on management, and the child is put either on prophylactic factor replacement or on-demand replacement given at home. With this type of treatment most children with haemophilia can go to school, enjoy sports, and expect to have minimal or no joint bleeding.

Comprehensive care by the Haemophilia team: responsibility is shared across the team. Patients are seen by physicians, nursing staff, physiotherapists, and social workers to provide care that covers all aspects of the disease to promote better living. They also work closely with specialists from dental orthopaedics, infectious diseases, gastroenterology, and obstetrics/gynaecology.

Treatment modalities: Replacement of the deficient factor VIII or IX through recombinant or plasma-derived concentrates is the mainstay of treatment for haemophilia. In case of inhibitors, bypassing agents (Feiba, recombinant factor VIIa) are provided to the patients.

The nurses at the centre have an important role. They:

• Help families deal with the day-to-day problems related to haemophilia
• Answer families' questions over the phone or at the clinic
• Provide out-patient care at the clinic
• Teach families how to do home therapy.
• Organise the delivery of factor concentrate for home use
• Co-ordinate appointments with other members of the comprehensive care team
• Are actively involved in research activities related to haemophilia and other bleeding disorders.

During the training I was able to learn a great deal through the resources and opportunities for observation provided to me. It helped me to update my clinical skills in caring for people with haemophilia and other bleeding disorders and to understand the scope of education and research in the areas of bleeding disorders. I was able to build skills in counselling patients, parents and carriers affected with haemophilia and other bleeding disorders. I also learned about database management of people with haemophilia and record keeping for effective analysis. Witnessing self-infusion of clotting factor concentrates by the haemophilia patients was a very new experience to me, and quite an eye opener.

I acquired very good resources on patient teachings like port care in person with haemophilia, home therapy, protocols, guidelines; CDs on joint health, home care and best practices etc.

HAEMOPHILIA IN DEVELOPING COUNTRIES

Unfortunately, the situation is very different for more than two-thirds of persons with haemophilia, who live in developing countries. In most of these countries the government does not have the resources to buy the necessary quantities of coagulation factors in the face of more urgent health priorities and hardly any patients can afford to pay for their own treatment, even for on-demand home therapy.

When resources are scarce, education is the cornerstone of haemophilia care. This should be the first major emphasis when organising haemophilia services in developing countries.
The Nurse Co-ordinator role within the comprehensive haemophilia team is still evolving in India. Against this backdrop I would say there is a need for a nurse’s forum in India in collaboration with Hemophilia Federation of India, which will support quality care for people with haemophilia and other bleeding disorders.

The comprehensive haemophilia care teams, where nursing had a distinct role and voice, have provided me with inspiration for developing the same role for Indian nursing staff who care for children with haemophilia, both at the bedside and in a specialty role.

Finally I would like to conclude by saying that it was a real life altering experience. And I am extremely thankful to all who made my stay so meaningful. Thank you one and all.

FURTHER READING

Chandy, M. Treatment options in the management of hemophilia in developing countries. Treatment of hemophilia, no 37. Montreal: World Federation of Hemophilia, 2005.