Health-Related Quality of Life and Behavioral Functioning after Intrauterine Transfusion for Alloimmune Anemia.
OBJECTIVE
To assess health-related quality of life (HRQOL) and behavioral functioning in children and adolescents treated before birth with intrauterine intravascular blood transfusion for alloimmune anemia.


METHODS
Cross-sectional cohort study conducted at the Dutch referral center for the management of fetal alloimmune anemia. Follow-up data were available for 285 children at a mean age of 10.5 years (range, 3-21.5 years) with a response rate for questionnaires of 97%. Child-, adolescent-, and parent-rated HRQOL was evaluated with The Netherlands Organization for Applied Scientific Research Child/Adult Quality of Life Questionnaire (TACQOL/TAAQOL). Parents reported on behavioral functioning with the Strengths and Difficulties Questionnaire. Scores were compared with Dutch norm data.


RESULTS
Significantly lower scores were reported by parents of children 6-11 years of age compared with Dutch norms on 3 scales: cognitive functioning, social functioning, and positive emotions (P < .00, P = .02, and P = .04). In children aged 8-11 years only the cognitive functioning scale score was significantly lower compared with Dutch norms (P = .01). The children aged 12-15 years reported higher scores on the negative emotions scale (P = .02). When corrected for multiple testing, only the parent-rated cognitive functioning scale remained significant (P < .001). Regarding the HRQOL scores of adolescents aged ≥16 years, no differences were detected. Overall, behavioral difficulties were reported in 37/246 (15%) children aged 3-16 years, and were associated with maternal educational levels (P < .001).


CONCLUSIONS
Parents reported lower scores on cognitive functioning in their children aged 6-11 years compared with norms. Behavioral difficulties were more prevalent than norms, and were associated with maternal educational level. Outcomes of children after intrauterine intravascular blood transfusion were quite good overall.
Division of Neonatology, Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands. Electronic address: j.m.m.van_klink@lumc.nl.
Jeanine M M
JM
van Klink
Department of Obstetrics, Leiden University Medical Center, Leiden, The Netherlands.
Irene T M
IT
Lindenburg
Department of Obstetrics, Leiden University Medical Center, Leiden, The Netherlands.
Marloes J
MJ
Inklaar
Jon J. van Rood Center for Clinical Transfusion Research, Sanquin-Leiden University Medical Center, Leiden, The Netherlands.
Esther
E
Verduin
Clinical Psychology, Faculty of Social Sciences, Leiden University, Leiden, The Netherlands.
Hendrik M
HM
Koopman
Department of Obstetrics, Leiden University Medical Center, Leiden, The Netherlands.
Inge L
IL
van Kamp
Jon J. van Rood Center for Clinical Transfusion Research, Sanquin-Leiden University Medical Center, Leiden, The Netherlands.
Henk
H
Schonewille
Department of Obstetrics, Leiden University Medical Center, Leiden, The Netherlands.
Dick
D
Oepkes
Division of Neonatology, Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.
Enrico
E
Lopriore
D000293:Adolescent; D000294:Adolescent Behavior; D000744:Anemia, Hemolytic, Autoimmune / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D001805:Blood Transfusion, Intrauterine / Q000379:methods*; D002648:Child; D002652:Child Behavior; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006801:Humans; D015994:Incidence; D009426:Netherlands / Q000453:epidemiology; D011788:Quality of Life; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D055815:Young Adult