Table 3.

Communication.

Characteristics	Total † n = 225	Parents* n = 197	Survivors* n = 28
Provided long-term information
No	118 (52%)	94/151 (62%)	24/25 (96%)
Yes	42 (19%)	42/151 (28%)	0/25 (0%)
Not Sure	16 (7.1%)	15/151 (10%)	1/25 (4.0%)
Problems with Resources No	58 (26%)	52/140 (37%)	6/23 (26%)
Yes	85 (38%)	73/140 (52%)	12/23 (52%)
Not Sure	20 (8.9%)	15/140 (11%)	5/23 (22%)
Providers understand long-term	49 (22%)	42/139 (30%)	7/23 (30%)
NEC complications
Have enough information about NEC and its long-term complications	37 (16%)	35/141 (25%)	2/24 (8.3%)
Had to explain NEC to others (i.e. teachers, healthcare providers)	129 (57%)	109/140 (78%)	20/24 (83%)

^†Values are n (%) total survey respondents.

^*Values are n/N (%) of questions answered.