Thalassemia is a genetic blood disorder. In the developing world, most children who suffer from Thalassemia do not live to see the age of 18 years let alone leading a normal life in the developing world, inspite of the fact that thalassemia is a disorder which is manageable (and now, even curable). Most individuals suffering from thalassemia do not receive proper and timely management leading to complication which eventually pave the way for untimely death.
Thalassemia requires extensive management. There are well laid out protocols on the triggers for transfusion, choice of blood components, parameters to be monitored, iron chelation, routine investigations, complication prevention and management which are widely available today. For the patients who can afford, treatment and care today is available adequately. Since the person is a patient on chronic transfusions healthcare professionals have to be very careful in maintaining and managing the history of treatment offered to the child in order to make proper decisions on the course of treatment. The treatment is expensive and takes a lot of time of the doctors, nurses, technicians and family.Estimates of the cost of care hover around $2000 per child per year in the developing world.
Sankalp India Foundation is a Bangalore-based non-government organisation. It is a youth organisation working for blood donation, thalassemia and disaster relief. They wanted to build a comprehensive solution for Thalassemia Management. Since we are the technological partners for Sankalp, they approached us for building the software.
Awards and Recognitions
- The tool Thalcare has been adjudged "WINNER of Manthan Award Asia Pacific - 2013" under e-Health category.
- The android based patient thalassemia App was adjudged the Second Runner Up in the Novartis Thalassemia App Challenge
- Sankalp India Foundation was declared one of the winners under Thalassemia category.
Thalassemia management software on a comprehensive level was not available in the market. We were not sure on the iteration of changes required for building a truly comprehensive solution. We chose Drupal because it allowed faster prototyping through Content Type, Entities and Views. Additional features and scaling could be easily managed via contributed modules.
ThalCare is a powerful thalassemia management tool which makes the job of managing patients with thalassemia extremely simple and effective for institutions delivering this healthcare. This tool is typically deployed at a day care center where the patients are coming for transfusion. It is single point of storage of all information related to these patients and generates automatic alerts, reports and indicators on the progress and treatment of each patient and the centre as a whole.
ThalCare is one of its kind for providing a comprehensive management for Thalassemia patient. There are currently no tool available on this scale.
There were few key technical requirement to be met:
- Provide visually indicative interface. One look at the patient page or any of the tests related data should be enough to intuitively guide the user.
- Support for content editors for easy data management. With huge data entry for each patient, this was a must.
- Ease of access. Minimal time for learning.
- Site Response. The system should respond to user request in a reasonable time
- Responsive Design. Have two set of design for mobile interface and desktop interface
- Third Party Integration. Allow third party access through well defined APIs
- Generation of multitudes of reports with automatic mailing to stakeholders. Printable templates with patient related data for usage.
- Implementation of guidelines for Thalassemia Management. Implement most of the algorithms possible and provide relevant suggestions.
- Scheduling for transfusion
- Captures the blood components which are given to the child
- Estimates the volume of blood that should be transfused based upon the pre transfusion hemoglobin and weight
- Keeps track of the freshness of the blood that is supplied to tha patients
- Allows tracking of the variation of hemoglobin with time graphically
- Captures and indicates any reactions that are triggered by transfusions
- Allowing early detection and warning for abnormal antibodies
- Sets of automatic indicators for need for ferritin tests
- Tracks variation in ferritin levels and need to start chelations
- Tracks chelation therapy with dosage and compliance
- Flags off abnormal ferritin and missed chelation
- Sets of indicators for need of various lab investigations after stipulated period of time
- Tracks all related investigations including Hematology, Electrophorosis, Biochemistry, Serology, LFT/RFT, Thyroid Profile, Genetic Evaluation, Radiology and Ultrasonography, HLA typing, ECG etc.
- Flags abnormal results including serological complications
- Maintains tabular and graphical history of variation for each of the tests enabling monitoring care effectively.
- Enables tracking the carrier status of family members
- Enables cascade screening program
- Enables identification of vulnerable couples for counselling and potentially antenatal screening
- Enables growth monitoring through WHO growth charts
- Visually indicates fitness for BMT(Bone Marrow Transplant) using standard criteria for donor as well as sibling
- Enables tracking of family support including travel reimbursement, financial support etc.
- Enables recording and analysis of social profiles for the patients
- Enables tracking on and reporting of incidences, procedures, complications etc.
- Multiple centres can work together in isolation on the same platform
- Patient complication management
- Automatic report mail.
Day Care Centre Management
- Basic Inventory Management and Finance Management
- Evaluation of effectiveness of the transfusion support, chelation support, reactions and lab investigations
- Enables early detection of problems, research and better visualisation of the potential threats.
The deployment of this tool at one of the centres of thalasssemia care run at a private autonomous institution has ensured that within a year the number of patients attending the clinic has trebled even as the doctors, nurses and technicians feel less burdened to proceed with their work.