Late Effects and Quality of Life of Survivors of Childhood Hematologic Malignancies Treated Mainly during 80’s in Japanese Group Study.

Persons who were treated mainly in 80’s were reviewed and assessed for the present status including late effects, school, social life, marital state.

Questionaire was sent to individual institutions and answers were returned from physicians or survivors themselves.

From 1881 to 1994, there were five clinical protocols in ALL, four in AML, and three in NHL. Registered and surviving numbers were 1,023 and 642 in ALL, 309 and 164 in AML, 200 and 166 in NHL. Of surviving numbers, responded number was 521 in ALL, 142 in AML, 103 in NHL. Of these 1,262 survivors, 128 persons have proven to have some kinds of late effects. Mean age of survivors was 6.7 at the onset of disease and 18.6 at the time of this survey. Questionair was as followings; diagnosis, gender, age, presence or absence of late effects, detail of late effects, and present status. As a result, 128 survivors (male/female; 78/50, ALL; 75, AML; 30, NHL; 23) have 169 items of late effects. The overall incidence of late effects was 13% in ALL and 20% in AML and NHL. There was no difference of incidence between each treatment protocols in ALL.

Additionally, 10 persons died with late effects. Of those, the cause of death was as followings; leukoencephalopathy; 3, cardiac toxicity 3, of them, one boy was in remission after completion of chemotherapy and died during running, relapse of primary disease; 1, secondary cancer; 1, measles; one who was in remission at the time of infection, ARDS; one who received stem cell transplantation. The late effects were classified as following categories (sALL/hALL/AML/NHL); hepatic 30(14/7/6/3), cardiac 7 (3/2/0/2), central nervous system 33 (13/6/6/8), short stature 29 (14/6/5/4), gonad 16 (3/4/9/0), thyroid 4 (1/1/2/0), renal 8 (3/1/2/2), pulmonary 6 (1/2/2/1), cGVHD 4 (1/2/1/0), secondary cancer 6 (4/0/0/2), others 26 (5/3/11/7).

The number of each category of late effects was so small, that decreasing tendency was not apparent with time course of this studying period except hepatic disorder, which is related to post-transfusion hepatitis C. CNS disorders include leukoencephalopathy, mental retardation, epilepsy, and visual disturbances. More than one half of short stature was found in the standard risk ALL. Most of gonad dysfunction, persistent alopecia, pulmonary and renal disorders were related to stem cell transplantation. Psychological or mental disturbance, which are related school troubles, was also observed. Second cancer found in six persons. Primary diagnosis of secondary cancer was ALL in 4 and NHL in 2.

For these persons who have late effects, present state of individual life was evaluated and classified into four categories; (1) usual life without handicapped and medical service, (2) no handicapped, but necessary medical service, (3) handicapped, but unnecessary medical service, (4) handicapped, and necessary medical service. Each category was found in any primary disease or type of treatment.

Discussion: The several major late effects of survivors will not decrease in near future, considering the number of survivors is increasing for these decades. Novel system for survivors should be build up as to make their lives healthier.