Health-Related Quality of Life Into Adulthood After Very Preterm Birth

Background: This study investigated change of health-related quality of life (HRQL) in very preterm/very low birth weight (VP/VLBW; born at <32 weeks' gestation and/or <1500 g birth weight) individuals from adolescence to adulthood. Are perceptions similar by different informants (self, parents) and is HRQL related to economic and social functioning?

Methods: In a prospective whole-population sample in South Germany, 260 VP/VLBW and 229 term born individuals were assessed from birth to adulthood. HRQL was evaluated by self and parent report at age 13 and 26 years with the Health Utilities Index Mark 3 (HUI3), and economic and social functioning from interview and standard assessments at 26 years.

Results: At both time points, HUI3 scores of VP/VLBW were reported to be lower compared with term born controls by participants and parents. Except for adolescent self-reports (P = .13) these differences were all significant (P < .05). In contrast to participants themselves, parents reported VP/VLBW individuals' HRQL to be worsening over time (change of mean HUI3 scores: 0.88-0.86, P = .03). Parents, particularly, reported negative changes in emotion and pain for VP/VLBW individuals over time. Participant and parent-perceived HRQL was negatively related to economic and social functioning outcomes such as receiving social benefits, unemployment, dating romantic partner or having friends.

Conclusions: VP/VLBW individuals and their parents perceive HRQL to be lower compared with term controls in adolescence and in adulthood. Lower HRQL was related to economic and social functioning problems in adulthood. No evidence for improvement of HRQL into adulthood was found in this geographical sample in Germany.