Hood Korey K, Johnson Suzanne Bennett, Baughcum Amy E, She Jin-Xiong, Schatz Desmond A
Pediatric and Adolescent Unit, Genetics and Epidemiology Section, Joslin Diabetes Center, Harvard Medical School, Boston, Massachusetts 02215, USA.
Genet Med. 2006 Oct;8(10):665-70. doi: 10.1097/01.gim.0000237794.24543.4d.
This study describes maternal understanding of infant risk associated with newborn genetic screening for type 1 diabetes.
Mothers of at-risk infants (n = 195), identified through the Prospective Assessment of Newborns for Diabetes Autoimmunity study, were notified of risk status by standardized script. Mothers participated in structured telephone interviews 1 and 3.5 months after notification that assessed understanding of infant risk and psychologic response to the news.
Most mothers (78.5%) were accurate in their understanding of infant risk at the initial interview, with a slight decline at the follow-up interview (73%). There was a significant increase in underestimation of risk from the initial (12%) to the follow-up interview (19%) (chi2 (1) = 6.0, P = .01). Mothers with less education, those from ethnic minority backgrounds, and those who were not married tended to be less accurate. Further, mothers who experienced more anxiety and fewer depressive symptoms in response to the news were more likely to be accurate. Likewise, underestimation of risk was associated with fewer anxiety and more depressive symptoms.
This study highlights the complex picture of factors promoting maternal understanding of infant diabetes risk in a sample of mothers whose newborns had been identified as at increased risk for type 1 diabetes.
本研究描述了母亲对与1型糖尿病新生儿基因筛查相关的婴儿风险的理解。
通过新生儿糖尿病自身免疫前瞻性评估研究确定的高危婴儿的母亲(n = 195),通过标准化脚本得知其风险状况。母亲们在收到通知后的1个月和3.5个月参加了结构化电话访谈,评估她们对婴儿风险的理解以及对该消息的心理反应。
大多数母亲(78.5%)在初次访谈时对婴儿风险的理解是准确的,在随访访谈时略有下降(73%)。从初次访谈(12%)到随访访谈(19%),风险低估有显著增加(卡方(1)= 6.0,P = 0.01)。受教育程度较低、来自少数族裔背景以及未婚的母亲往往准确性较低。此外,对该消息反应时焦虑程度较高且抑郁症状较少的母亲更有可能理解准确。同样,风险低估与较少的焦虑和较多的抑郁症状相关。
本研究突出了在其新生儿被确定为1型糖尿病风险增加的母亲样本中,促进母亲理解婴儿糖尿病风险的因素的复杂情况。