Health-Related Quality of Life and Behavioral Functioning after Intrauterine Transfusion for Alloimmune Anemia

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• 作者：Jeanine M.M. van Klink ; MSc¹ ; ^{j.m.m.van_klink@lumc.nl" class="auth_mail" title="E-mail the corresponding author} ; Irene T.M. Lindenburg ; MD² ; Marloes J. Inklaar ; MSc² ; Esther Verduin ; MD³ ; Hendrik M. Koopman ; PhD⁴ ; Inge L. van Kamp ; MD ; PhD² ; Henk Schonewille ; PhD³ ; Dick Oepkes ; MD ; PhD² ; Enrico Lopriore ; MD ; PhD¹ ; on behalf of the Long-Term Follow-Up after Intra-Uterine Transfusions Study Group^&lowast ; Vivianne E.H.J. Smits-Wintjens ; MD ; PhD ; Frans J. Walther ; MD ; PhD ; Humphrey H.H. Kanhai ; MD ; PhD ; Ilias I.N. Doxiadis ; PhD ; Anneke Brand ; PhD
• 关键词：CF ; Child form ; HRQOL ; Health-related quality of life ; HS ; Health status ; IUT ; Intrauterine intravascular blood transfusion(s) ; LUMC ; Leiden University Medical Center ; PF ; Parent form ; SDQ ; Strengths and Difficulties Questionnaire ; TNO-AZL TAAQOL ; The Netherlands Organization for Applied Scientific Research-Academisch Ziekenhuis Leiden Adult Quality of Life questionnaire ; TNO-AZL TACQOL ; The Netherlands Organization for Applied Scientific Research-Academisch Ziekenhuis Leiden Child Quality of Li
• 刊名：The Journal of Pediatrics
• 出版年：2015
• 出版时间：November 2015
• 年：2015
• 卷：167
• 期：5
• 页码：1130-1135.e2
• 全文大小：210 K

文摘

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.

Study design

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).

Conclusion

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.