Number of Participants: 28
The Haemophilia Awareness and Training Programme was conducted under the preview of Dr. Naresh Gupta, Central Network Co-coordinator for Haemophilia in India and Director Professor and Head, Haemophilia Day Care Centre (HDCC), Dept. Of Medicine, Maulana Azad Medical College (MAMC) & Lok Nayak (LN) Hospital, New Delhi on 20th November 2013. It was for the first time that the HATS programme for nurses was being conducted at the HDCC. The necessity for training nurses was realized from practical situation that during the emergency the out patients can visit any ward other than HDCC for any routine check-up or treatment. Therefore it was equally important to educate and train the nurses along with the doctors and administrators.
Under the head of haemophilia awareness programme, an initiative was started to educate the nurses through an interactive session and discussion. The key highlights of the programme consisted of a small introductory lecture about the disease, treatment available, role of nurses, open hour, discussion and frequently asked questions (FAQ’s). Information brochures, along with along educational materials, pre-post assessment answer sheets were provided to all the participants. A pre-assessment test was taken before starting the session to analyze the impact of the meeting.
Dr. A. K. Mittal, CMO-SAG, Lok Nayak Hospital heartily welcomed all the participants understanding the fact that, nurses form the backbone of any hospital facility and care lies in their hand. A pre-assessment test was conducted in which ten questions related to haemophilia were projected one after another and the participants were allowed a time of about 15seconds for each answer. Responses were obtained through the answer sheet form supplied along with the folder educational material which were collected back just after the pre-assessment test.
As to start with the programme, Dr. Sunita Aggarwal, Associate Professor, Dept. of medicine, MAMC interacted with the nurses and discussed about the disease and the other various perspective such as its cause, severity, treatment and prevention, molecular insight on coagulation and cascade mechanism deficiency of FVIII/FIX, defects with fibrin and platelet plug formation, historical background and carrier description. The scenario of other medical institutions at the national level, except a few specialized haemophilia treatment centers most nurses in emergency facility, general wards and other departments have an inadequate knowledge on the diagnosis and treatment of haemophilia, as a supportive to which quick key ideas were imparted to these participants.
Amongst these a few key clinical features to diagnose a joint bleed, with observations demonstrated by the patient as perception of tingling sensation with feeling of warmth and inability to move joint, flexion deformity with joint swelling. Immediate treatment of a bleed should be provided to the patient to recover from joint contractures, muscle atrophy and new episodes of bleed, categorizing the severity to decide dosing and to assess the clinical complications, care should be taken while putting cannula, since repeated unskilled punctures increase the bleeding risk, intra-dermal and intra-muscular injections are to be avoided due to the risk of hematoma formation leading to muscle abscess. Bleeds in intra-cranial, abdominal with passage of blood in stool and respiratory system can lead to life-threatening situation if not treated at the earliest. Female carriers are asymptomatic however in some female subject’s prolonged menstrual bleed and excessive bleeding during surgery/delivery were the commonly discussed topics.
Dr. Naresh Gupta thanked Dr. Sunita for the speech and informed that the picture was now much clearer to the participants. Dr. Gupta communicated with the participants and asked them “If any patient comes to you with haemophilia what will be your action?” Now, as an answer to this bleeding from any disease looks the same and cannot be linked directly to haemophilia. Bleeding disorders can be acquired or hereditary, where haemophilia being the later. He focused that the initial diagnosis of the bleed should be targeted to find the cause of bleed i.e. systematic and the rate of bleed. Our HDCC is one such Centre with all such amenities, where suspected cases first undergo factor assay to diagnose the type and severity, since factors are expensive and improper treatment of any bleed with non-specific factor infusion would not produce any therapeutic benefit. However in case of non-availability of recombinant factor, Fresh frozen plasma (FFP) can be used, but studies have shown that FFP carries the risk of viral, HIV, HCB, HCV infections.
Dr. Sartaj Ali, Medical Officer, HDCC, LN Hospital along with Sister Suresh Mini, Nurse from HDCC defined the role of nurses in haemophilia treatment, its management and patient education, since they were the personnel who interact on an everyday basis with the patients with haemophilia. Dr. Ali spoke that if the patient is acquainted with his clinical condition, then this may be helpful for the medical practitioner to take an immediate action and comes in handy in emergency situations, while factor tests should also be known to the nurses even.
Dr. Ali briefed about the patient scenario at the HDCC OPD, where patients commonly report with bleeding complaints in knee, elbow, psoas, elbow and intra-cranial bleed. Most of the patients are diagnosed and clinically confirmed cases of haemophilia but a fraction of patients in pediatrics ward cannot be categorized, due to follow up reasons. We maintain a complete medical history of all the patients visiting our facility i.e. etiology, basis of coagulation disorder, family history, diagnostic test, physiological issues, complications, exercise, inhibitor assay, infections with factor infusion precautions such as route of factor administration should be IV with a rate not more than 3-5ml/min, no intra-muscular infusion should be practiced, avoid NSAIDs, and apply pressure for 3-5mins post-venipuncture etc.
Lastly Sister Mini demonstrated the process for AHF infusion by the help of step-by-step pictorial slide presentation.
All the participants i.e. nurses were overwhelmed by the awareness programmes and suggested that such programmes should be organized which could inculcate more medical practitioners and educate more nurses in different wards. A post assessment analysis also proved to be beneficial in terms of knowledge impartment and reflected a %increase in post-assessment test and an overall impact of %.