Patient-reported outcomes for congenital diaphragmatic hernia: A qualitative study

被引:2
|
作者
Taillieu, Aymara [1 ]
Deprest, Jan [1 ,2 ,3 ]
Vergote, Simen [1 ,2 ]
Debeer, Anne [1 ,4 ]
Russo, Francesca Maria [1 ,2 ]
Power, Beverley [5 ]
Meijer, Frank [6 ]
Crombag, Neeltje [1 ,7 ]
机构
[1] Katholieke Univ Leuven, Dept Dev & Regenerat Cluster Woman & Child, Biomed Sci, Leuven, Belgium
[2] Univ Hosp Leuven, Dept Obstet & Gynaecol, Fetal Med Unit, Leuven, Belgium
[3] UCL, Inst Womens Hlth, London, England
[4] Univ Hosp Leuven, Neonatal Intens Care Unit, Leuven, Belgium
[5] CDH UK, Kings Lynn, England
[6] Platform CHD, Arnhem, Netherlands
[7] Utrecht Univ Med Ctr, Dept Obstet & Gynaecol, Utrecht, Netherlands
关键词
PSYCHOLOGICAL DISTRESS; LONG; INFANTS; IMPACT; MANAGEMENT; DIAGNOSIS; SURVIVORS; CHILDREN; PARENTS; MOTHERS;
D O I
10.1002/pd.6303
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
ObjectiveTo identify Patient-reported outcomes (PROs) for parents with a lived experience of a prenatal diagnosis of isolated congenital diaphragmatic hernia (CDH). MethodThematic analysis of in-depth interview transcripts. ResultsInterviews (n = 26) identified 11 PROs for given time points throughout the CDH trajectory. At the time of diagnosis, acceptable quality of life was selected as relevant PRO to decide whether to continue or terminate the pregnancy. During pregnancy, (neonatal) survival chances and the eligibility for foetal therapy were prominent outcomes with foetal and maternal complications adding distress. After birth, postnatal management options became the next milestone. When survival was deemed likely, post-hospital discharge complications and future care for infant and child became important. In retrospect, impact on family, bonding, parental mental health, and parental satisfaction with care were reported as relevant outcomes. ConclusionPROs are relevant in addition to hard medical outcomes, as they help parents to make decisions suiting their unique needs and personal situation. Given the knowledge inherently related to the parent's perspective, our findings provide relevant directions for clinicians to support parents and their family in facing challenging decisions in healthcare. The outcomes impacting parents are essential to prepare parents for the steep journey ahead.
引用
收藏
页码:339 / 354
页数:16
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