A 2 day hands on program for health care professionals involved in thalassemia management
24-25th February, Bangalore
A two day workshop for doctors involved in thalassemia management from Bangalore, Hyderabad and Maldives was organised at Project Samraksha, Rashtrotthana Parishat. Doctors from Indira Gandhi Institute of Child Health, Bangalore, Project Samraksha, Bangalore, Thalassemia and Sickle Cell Society, Hyderabad and Maldivian Blood Services, Republic of Maldives and People Tree Center for Paediatric Bone Marrow Transplantation attended the 2 day program. It was a unique situation as 4 centers covering a total of 3131 patients involved in scientific discussion around the management protocols and challenges associated with thalassemia management at their respective centers.
Project Samraksha as the venue provides a unique opportunity as it is probably the only center in the country where not only can one see high volume thalassemia management, but also see the whole process of exploring the option of cure, down staging (preparing) the patients for transplant in the pre-transplant work-up phase as well as the monitoring and management in the post-transplant work-up phase.
In the guidance of Dr Lawrence Faulkner, the Medical Director of Sankalp-People Tree Centre for Paediatric Bone Marrow Transplantation, the discussion points included:
- Management of iron overload – how to approach the difficult situations
- Use of hydroxyurea in reversing the complication associated with thalassemia management
- Management of patients in the pre- and post- transplant phasesManagement of sickle cell anaemia and other hemoglobinopathies
- Early interventions and preventive approaches to reduce the complications
- Blind-spots in thalassemia management
Discussing practical issues being faced by the centers with real cases studies and backed up with uniform data points from each center made the discussions lively, relevant and impactful. A strong asset in this workshop was the fact that 3 of the four centers use ThalCare for patient management. With the availability of well organised data from the centers, it was possible to discuss the difficult cases with complete background. Also the center wide performance, the various strengths, the challenges etc. for each of the center were discussed. Thal Report – an auto-generated assessment of the quality of management of thalassemia on relevant parameters was also shared and discussed. Centers shared with each other the strategies for improvement. There was also broad consensus on doing multi-institutional studies in near future.
“The way forward to improve care and management of thalassemia is to enhance cooperation between the centres and to learn from each other. We organised the first such workshop in February 2015 and the positive impact was felt by the participating centres immediately. Sankalp India Foundation is committed to enabling more such scientific interactions” – said Lalith Parmar, President, Sankalp India Foundation.
Not only was there an interaction of the doctors but also between the pillars of delivery of care – the nursing teams. Sonal, the staff nurse from Thalassemia and Sickle Cell Society, Hyderabad said - “I got good motivation from both Dr Reshma and Ashwini to manage our centre also better than was before and take greater care of thalassemia patients. I have to visit again and this was a very good experience. Thank you”.
It was very encouraging to note that all the participants found value in attending the workshop and look forward to regular interactions. We are convinced that the battle with thalassemia can we won only if we work together. The fact that teams across centres are participating with enthusiasm in these events is very promising.
“These days of interactions with my colleagues were very helpful and it will surely improve the care for my patients back in Maldives. Thank you for giving me this opportunity. Looking forward for more such meetings”
Dr Umar, Maldivian Blood Services(MBS), Maldives
It was a wonderful, good, knowledge sharing. I am very happy to visit Samraksha Thalassemia Day Care Centre. Staff are very cooperatiive and ready to share knowledge. I personally feel we should meet once in a year and discuss difficult cases.
Dr Suman Jain, Thalassemia and Sickle Cell Society,Hyderabad
The sessions were good and interactive. They helped clear my doubts and build good understanding of hydroxyurea. The positive approach has given more motivation and zest to strenthen our program.
Dr Saroja, Thalassemia and Sickle Cell Society, Hyderabad