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Net gains for haemophilia patients

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David Stephensen; Brian Ramsay.

David-Senior Physiotherapist; Brian-Staff Nurse.

Treating haemophilia involves the intravenous administration of clotting factor concentrates (Rickard, 1995). These are either given prophylactically two to three times per week to prevent bleeding or in response to acute episodes of bleeding.

Treating haemophilia involves the intravenous administration of clotting factor concentrates (Rickard, 1995). These are either given prophylactically two to three times per week to prevent bleeding or in response to acute episodes of bleeding.

In the case of acute bleeding, treatment needs to be given immediately to prevent a threat to limb or life and to prevent long-term disability (Rickard, 1995). As a result almost all treatment takes place in the patient's home.

The management of haemophilia, a rare inherited bleeding disorder, is co-ordinated by a network of comprehensive care centres throughout the UK.

Patient records
The main method of communication between staff at the centre and the patient at home is the patient's home-treatment records. These are standard paper forms that the patient completes at home and brings to clinic appointments, usually every six months.

Information from these records can be used to make important clinical decisions, including changes to the patient's treatment regimen, and monitoring and preventing the life-long disabling effects of joint damage and chronic arthropathy.

The records can also help assess whether patients are responding appropriately to bleeding episodes, with correct treatment dosages and frequency.

Unfortunately, in our centre, we know that at least 25% of our patients do not complete home treatment records. Many records are incomplete or filled in by patients the day before their clinic appointment (Love et al, 1996).

Clinic appointments are often spent trawling through the patient's paper records, which is not an efficient use of time. Records may be at least six months old, which results in delays to changes in patient management. A problem can thus be more severe than if it had been identified earlier.

Managing haemophilia via the internet
Such difficulties prompted our centre to try an internet-based system. This enables patients, carers and health-care professionals to share important therapy data, explore resources and get access to other valuable information about haemophilia.

We have shown this system is a viable alternative to paper home-treatment forms.

From the patients' perspective, the website used is secure and all information that they enter is private and cannot be accessed by unauthorised individuals. Messaging facilities allow patients to send messages to specific members of the care team asking questions or raising possible concerns.

From the clinical perspective, the system provides a range of graphical and tabular outputs for depicting data.

The system also has an email alert facility, which automatically emails a designated health-care professional when specific treatment parameters are not met. This means that the clinical staff can quickly and easily get a picture of how a patient is doing and whether they need to be called for an appointment.

These features can help clinical staff identify trends, chart usage of factor concentrate and follow breakthrough bleeds.

All patients with severe haemophilia on home treatment and with access to the internet who were interested in participating in our trial of the system were invited to the haemophilia centre for training.

A preliminary audit of the results of traditional home treatment records versus the web-based system over a six-month period indicated that:

- 90% of system users kept their records up to date compared with 40% of paper users

- 90% of system users kept accurate records compared with 64% of paper users.

Since the introduction of this system we have seen a steady improvement in the quantity and quality of patient records.

There has been increased compliance by patients, with more up-to-date and accurate records. As a result the clinical team has been better able to identify and correct potential problems without delay.

The introduction of this system has improved the flow of information to the haemophilia centre. Now patients are able to complete records of their factor concentrate usage and breakthrough bleeds online, which makes them instantly available to the centre.

More recently, a mobile personal digital appliance (PDA) version of the system has been introduced.

Improved management helps to reduce unnecessary joint and muscle damage, keeping patients healthy and, above all, able to retain their independence.

Love, L., Winter, M., Bedford., Blaxland, A. (1996)Home therapy forms: why don't they come back? Haemophilia 2: 182.

Rickard, K.A. (1995)Guidelines for therapy and optimal dosages of coagulation factors for treatment of bleeding and surgery in haemophilia. Haemophilia 1: (suppl 1), 8-13.

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