Sagar B. Bhattad, India
Aster CMI Hospital PediatricsPresenter of 1 Presentation
NON - MEDICAL CHALLENGES IN THE DIAGNOSIS AND TRANSPLANTATION OF PATIENTS WITH PRIMARY IMMUNE DEFICIENCY – AN EXPERIENCE FROM A TERTIARY CARE CENTER IN INDIA
Abstract
Background and Aims
Background
Primary Immune Deficiencies (PID) are increasingly being recognized in several parts of India. Despite being diagnosed, many patients fail to receive optimal care due to financial and social constraints.
Objectives
Analyze the outcomes of patients diagnosed with PIDs at Aster CMI Hospital, Bangalore.
Methods
Case records of patients diagnosed and treated (including hematopoietic stem cell transplants) for PID diseases during Feb 2017 – March 2019 were analyzed. Factors leading to deferred or suboptimal care were assessed in detail.
Results
74 patients with various PIDs were diagnosed during the study period (Table). 43 of them warranted a hematopoietic stem cell transplant (HSCT) as definitive curative treatment. A total of 10 children received 12 HSCT. 3 of them died while 7 of them are alive and well. 20 children died before an HSCT could be carried out. 14 of them were critically ill at presentation, while 6 were stable but deferred further treatment citing financial and social constraints. Only 23% of children warranting HSCT could be transplanted in our cohort. Among those where HSCT is potentially curative 46% of children died before HSCT could be offered.
Conclusions
We present our experience from a developing country and discuss non-medical factors leading to suboptimal care in children with PID. Transplants in developing countries pose unique challenges due to the absence of government funding and/or universal insurance coverage. In addition to the delay in diagnosis and critical state of patients at admission, financial and social factors significantly contributed to a poor outcome.