What Happens to Children with Leukemia and Lymphoma after Diagnosis in Developing World?.
Authors: Yadav Satya Prakash , Sharma Sunil Dutt , Misra Ruchira , Sachdeva Anupam 
Published: October 2019

Abstract
Cure rates in children with leukemia and lymphoma have improved dramatically in the last four decades. In developed countries almost all patient opt for and receive proper treatment and survival rates are close to 80 %. In developing world even after proper diagnosis many patients are lost to follow up. India is a developing country with a population of more than a billion and cancer is emerging as a major cause of childhood death as a result of reduced mortality from preventable infectious diseases. In 1960, the rate of death among infants in India was 150 per 1000 live births. By 2001, the rate had decreased to 58 per 1000. As the population of Indian children nears 350 million, a conservative projection of 50,000 new cases of pediatric cancer each year can be made. We analyzed the outcome of the children diagnosed with leukemia and lymphoma at a single centre in Delhi, India. Study included all children aged less than 16 years diagnosed with leukemia (Acute lymphoblastic leukemia ALL, Acute myeloid leukemia AML and Chronic myeloid leukemia CML) and lymphoma (Hodgkin Disease HD and Non Hodgkin Lymphoma NHL) at Sir Ganga Ram hospital from January 2005 to July 2006. Follow up survey was done by contacting parents by telephone and/or letter in all patients lost to follow up and reasons asked for the same. 146 children with cancer were diagnosed during the study period. 82 children (56 males and 26 females) had hematological malignancies (ALL 58, AML 4, HD 8, NHL 7, CML 5). 47 children (Male: Female = 3:1) remained in our follow up out of which 11 have died. 36 (43%) are alive in follow up. A total of 35 children (Male: Female = 1.3:1) were lost to follow up (ALL 27, AML 1, HD 3, NHL 1, CML 3). Average duration of follow up of these patients was 1 week (range 1–4 weeks). None of the patients were lost to follow up if they finished first one month of chemotherapy. Parents of only 32/35 children could be contacted. 19/32 children have died (ALL 18, AML 1). 8 opted for no treatment out of which 6 have died. 7 opted for alternative therapy mostly ayurvedic treatment (longest follow up was AML patient who lived for 12 months and remained transfusion free for 8 months) out of which 5 have died. 17 opted for chemotherapy at other hospital (4 opted for a cancer centre in another city and 2 died, 13 opted for treatment in other cancer centres in the same city-11 in public hospital out of which 5 died and 2 in private hospital with 1 death). Average annual income of parents of children in follow up was US $ 8000 and those lost to follow up was US $ 2500. Reasons for not following up were cost of treatment in 21 (66%), lack of faith in our cancer centre 10 (31 %), ignorance & fear of chemotherapy 14 (43%), girl child 9 (28%). Patients living more than 100 km away from our centre were 16/47 (34%) in follow up and 18/35 (51%) in those lost to follow up. Our experience is a reflection of status of children who are diagnosed with leukemia/ and lymphoma in a single centre with just 43% alive and left in follow up. Almost 60% of children who were lost to follow up have died. What, if anything, can be done to bring the benefits of modern cancer treatment to more children? The most immediate and substantial results will probably come from expanded access to treatment, the elimination of reasons for abandoning treatment, and better control of complications of infections. It has been said that if we are to preserve civilization, we must make certain its benefits are available to the many, not reserved for the few.