Collection of Long Term Follow up Data in HSCT- a Single Centre Experience from India

Abstract

Background Patients post allogeneic stem cell transplant need close follow up till Day+100 as they are at high risk of Acute GvHD, CMV Reactivation, severe infections etc. Patients surviving beyond day+100 also need regular follow up and monitoring for chronic GvHD, conditioning related toxicities, growth, endocrine and psycho-social issues. Regular follow up helps physicians to intervene appropriately and to improve patient's quality of life. Accurate collection and recording of this data is essential. Aim Describing our practice of collecting long term follow up data in Hematopoietic Stem Cell Transplant patients. Method In our centre, 992 transplants have been performed from January, 2008 to September, 2019 which includes 539 Allogeneic, 156 Haploidentical, 269 Autologous and 28 MUD Transplants. Median long term follow up for these patients is 1047 days (range 102 - 4289). We have a good mix of domestic and as well as overseas patients. The domestic patients are followed up in our LTFU OPD and the overseas patients once they return to their own country (usually after day +60), get regular monitoring with their local transplant physician. They send follow up prescriptions and reports through emails or messages periodically which are recorded by the Data Manager. On an average we record more than 13 post transplant visits for long term follow up every months. All records are documented in our Data Base on a regular basis. This data is regularly sent to the ISBMT which is further sent to APBMT. Data managers are regularly trained for accurate collection and documentation. In our LTFU OPD, a detailed history and a head to toe physical examination is performed. Specific investigations are ordered and reviewed. Referrals to relevant medical specialists are made for routine screening and surveillance for late effects of transplant. Patients are also referred for dietary, lifestyle counselling and post transplant vaccination. Conclusion LTFU OPD helps in early diagnosis and timely referral for long term effects post transplant. By collecting and recording this data we can improve the transplant outcome including health related quality of life. This also helps to provide the regional transplant groups accurate data as well as in retrospective analysis of data for improving clinical practice.